My life with Multiple Sclerosis

One year Post

2012-02-08T09:20:00.002-05:00

Well here I sit almost one year to the day of my CCSVI surgery, fresh after a great birthday day with my wife. Horseback riding, hiking and enjoying the outdoors at our new home in Tennessee. Who would have thought this could be possible (even moving myself... WHAT?). What an awesome year!

In January of 2010 I got the call from the doctors. February 11th, 2011 my life would change yet again. This time for the better in ways I could never have imagined. Coincidently this came almost directly after being turned down to participate in the CCSVI trials in upstate NY. Things work out the way they do for a reason, somewhere somebody has a plan.

With the great support of my wife family and all my friends, off I went to Albany. The trip was a true life changer. Spending time with Mark and Pat, sorting through the changes was so cool. I remember the tooth brush incident like it was yesterday. If you missed my posts or wanted to read things again I am including the links here. CCSVI Treatment Day After....!!!!!!! Day 2 Quick update Plugged In! If you want to read more in-depth about my year there is a "Blog Achieve" on the right, just scroll down.

After my return, the journey back with my beat up body began, getting things back in shape and getting my body to match what I had in my head. No fog, clear thought, no fatigue…time to get my life back. My body would take more time but after 3+ years of doing absolutely nothing, it was to be expected. Walking, hiking, horseback riding, going to town wasn't a big deal anymore. I remember like it was yesterday, often calling my wife from town and saying I am coming back, I can't do anymore today (almost too out of it to drive home). I hated those days and I will never forget them (I don't think Anne will either).

The next big thing was nutrition. A few times I hadn't felt up to snuff, not tired or fatigued just off. Not healthy. After doing some research and talking to a few people I decided to go with an Isagenix program. I have lost over 30lbs and haven't felt better. Anne has had great success as well. Getting my nutrition in order was obviously the next step I needed to take. I won't go on about Isagenix and how great it is but if anyone is interested let me know.

This year we went to Boston for Christmas and MS never even came up. There was no worry about fatigue, it was gone. In fact, no one even asked me how was I doing. I went out walking in the park with everyone, I wasn't dogass tired at the 9:30pm movie on Christmas Eve. I was normal, myself. Truly a great way to end the year... with family, on a holiday, with no worries. I still shake my head when I look back on this year… wow.

There are several people I have gotten to know this year because of MS and CCSVI. Those that have had surgery have had great changes and some have had less. Everyone reads different. I am proud of all of you who got involved and took charge of your MS. Trying everyday to move ahead into making things better. Don't sit back, beaten down by this terrible disease. Anyone who gets down, (been there) it's understandable and expected. It's the coming back, the fighting, the looking ahead and striving to make tomorrow a better day that matters. If CCSVI is not an option for you, keep fighting, keep looking. Rely on YOURSELF. Do your OWN research. Do not simply listen to one or two neuros about what you should do. Talk to others that have MS. Find out what others with MS have done to better their lives. Keep an open mind and fight. If anyone needs to talk, please contact me. I am always around.

To everyone involved in my life, my wife (BIG), family, friends and my Facebook family thank you for the great year and all the support. You all have been amazing and a big part of this great year. Thank you all.

P.S. If you haven't been tested for CCSVI, do it yesterday.

Helping others with MS.

2011-11-03T14:28:00.001-04:00

Logan

I know I mentioned on FB what I would be writing about this time but I have changed things up a bit.

I have had a lot of things running through my mind these past few weeks. I have been contacted by a few people about MS/CCSVI recently. Every time I hear someones story, I reflect on things, my life, what's happened to me and prepare to write back. It always seems new to some extent, a bit different. Everyones journey with MS is different and so personal. What we hear, read, learn, share is amazingly different yet similar. It's very important for people who are new to MS to reach out to others who have gone through what they are now taking on. It's also important for those in the journey to help others. One person wrote to me "It gives us some hope that he can live a somewhat normal life." There is hope, a lot of it! I along with many others are better now then we were even prior to our MS. I can't stress this enough talk to people, help them, support them, teach them, but never judge them on their journey. Everyones choices about MS need to be respected.

So, here I am November 3rd 2011 coming up on my 9 month post op from CCSVI. My life has changed so much I can't even find the words. As some of you know I have been struggling lately (with my thoughts) over my MS diagnosis, CCSVI and how it relates. Do I still have MS, did I really have MS, what's MS have in store for me in the future. That is going to one heck of a future blog entry. A short 9 months ago I would never be doing what I am today. My wife and I took a trip to Big South Fork two weeks ago (wouldn't have done this). Two hour horseback trail ride (years and yes my ass hurt...lol). We had so a great time and loved the place so much we are picking up and moving out there as soon as we can. Life is to short to sit by and watch it. I have done enough of that. The really huge part of this is…..I am doing it..I am packing things up…I am planning….I am sorting through things that need to be done…I am doing it. Not watching, not trying to gather my thoughts, not fighting off aches and pains, not taking nap, not laying in bed…I am doing it. Awesome…… I will keep you all up-to-date as the move gets done...LOTS going on there.

In closing this quick update I wanted to pass this along. Everyone who contacts me asks similar things about CCSVI. When should I look at it, should I wait, whats the best time to get tested, am I sick enough, are these symptoms similar? The answer to all these questions is simple. If you are asking about it do it yesterday, waiting serves you no purpose. Find an Interventional Radiologists learn about CCSVI, get tested, and get treated. If you need help, information, or just want to talk please get in touch with me. I would be glad to answer any questions or get you any information I can.

PS: I haven't forgotten. Once the move is over I am going to take on writing the "Do I still have MS?" update. It may be a long ramble but it will be coming, promise.

Best to everyone!

Reflections 7 months post CCSVI.

2011-09-12T14:58:00.002-04:00

Chill'n Monkey.

WOW! 7 months since my surgery, my how time goes by. I remember the trip to NY like it was yesterday. I remember all the worries, the crazy ideas that kept running through my head. Was this the thing to do, is it really safe, what if this does nothing, what if this makes be worse, what if I become a burden on my wife and family…what if…..

Here I sit Monday September 12th after the 10 year anniversary of Sept 11th in reflection. I wake up, I think of Anne, I think of work, I think of my family, what's the weather? I get up let the dogs out, feed them, wrestle around a bit. Turn on the coffee machine, hmm…walking this am?…plug the iPhone in to charge, and pour myself a cup of coffee. Before I head off on my 5 mile walk I sit down to read over my Facebook…..wait a minute…..not one thought..nothing…. As I read through my Facebook, blogs and check the forums I frequent MS comes up, I have thoughts, feelings, comments and give some some feedback but things have changed….my how things have changed.

7 Months ago everyday I would wake up and the first thing I would do is look at the ceiling fan as I woke up to see how my eye was acting that am. Any blind spots? How is the Optic neuritis vision today? Next a self check of my body…what hurts..anything sore….how is my energy? OK sit up and get your bearings and try to get moving….ughh….did I even sleep doesn't feel like it. Then my thoughts would turn to Anne and trying to remember what I have to get done for the day? I better get it done early as I might not make it to lunch....stand up....here we go..

I know I have told everyone within my reach to please look into CCSVI, your diet, what your nutritional balance is. Look at your vitamin D levels and your B12 get those levels where they belong. But truth be told my CCSVI surgery has not only changed my life with MS but dare I say a rarely think of MS when it comes to me. In truth, I don't think I have in months. Now don't think for one second I don't remember it all or the burdens that I had. I am free of the fatigue, the cognitive issues, the heat, and the rest of "that" list.... all that matters is it's GONE! I have my occasional eye flare up but I was noticing just Friday that I believe my vision has even taken another step for the better.

Please for your sake get tested. Take a hard look in the mirror, your life might be the next one to change.

23 days...17 lbs and 7% body fat later......

2011-08-10T08:08:00.003-04:00

3 Mile walk on the weekend.

OK, I haven't been able to write this the last 2 weeks or so but I sat down this am and got it done. No more "teasing" about my weight loss!

After my CCSVI surgery in February my body started to change and adjust to the new open blood flow. We're not sure if it is a direct correlation to that, but soon after I developed hives.
My GP prescribed steroids and other medications, but when all of that was not successful the conclusion was "things should get better in a year or so". Hard to believe, but the hives cause skin and heat sensitivity that keep me nearly as housebound as MS did. It was time to take things into my own hands.

I decided to go back to what has always worked best for me - nutrition. Post-treatment I had been feeling so much better I slipped a bit off the Swank diet. Not a big surprise I suppose, but not something I'm proud of either. I considered returning to Swank but decided that a nutritional cleanse approach would likely be the most help for hives. Through research and talking to friends and family I came across what sounded like a possible solution, Isagenix.

The Isagenix system looked very promising. It is a high quality, all natural (and gluten free) line of products designed for nutritional cleansing and rejuvenation. Their synergistically designed program cleanses the vital organs without being invasive or depleting. They offer a ton of products and options to get you started toward a healthy balance, so many products it was a bit overwhelming at first. So my wife and I decided to try the 30-Day system which contains a good mix of products.

We like Isagenix because it is not a diet or a fast. It is an enzyme transport system that facilitates nutrient delivery, digestion and absorption of 242 carefully selected nutrients.

The Isagenix products are made with organic herbs, high quality vitamins and a uniquely processed mineral blend. Nutritional cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

* Accelerate the removal of impurities from the body (.
* Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities.

My review after 23 days is nothing short of outstanding. It was easy to familiarize myself with the program and plan my meals. I found a really handy app for the iPhone that tracks everything, called MyNetDiary (also available for Android). I weighed in, recorded my measurements and began my journey. I was surprised to find I am not hungry on this plan! Within a week I started to notice subtle changes in the hives. They weren't gone but the outbreaks were becoming fewer and less intense. I felt better enough that I wanted to take a walk, which I hadn't been able to do in a while. It was great being outdoors again. I noticed I had a lot more energy. A bonus side effect came when I weighed myself at the end of the first week and found I had lost 10 pounds! Now 23 days in, I am down 17lbs and 7% body fat. I continue to have plenty of energy and am increasing my walking time every day. My wife has noticed diminished back pain, increased energy, and she lost 8 pounds. Bottom-line we feel awesome. Isagenix really works.

I can't encourage you enough to give this a month and see if it helps you. There are so many benefits! If you have any questions about Isagenix or want to get started on a program email me here or call my cell if you have the number. I am able to get you in at wholesale prices. I also want to stress that to get results, you need to stay on the program. You can't expect anything to help you if you don't stick to it. I will keep you updated on my progress as I continue. I will be going right into another 30 day after I finish this one. Can't wait to see how things go next month!

More soon as always.

On Facebook here.

Tysabri vs CCSVI benefits, dangers, risks

2011-06-21T11:20:00.004-04:00

In talking with several friends the past few weeks I have to bring up something, Tysabri vs CCSVI benefits, dangers, risks and what will help us best. My thoughts are as follows.

We all must decide as we sit staring as this disease and suffering from a multitude of issues what benefits we could gain if any from using any drug or other treatment. We are all faced with a terrible progressive disease. Will a drug cure me…….that answer is no. There is no cure for MS. Different drugs offer different options and do different things. Please do YOUR OWN research before blindly relying on your neuro to make the call. Be an informed MS patient and rely on yourself first to make these BIG decisions. Neuro's don't think like you nor should they make decisions for you. Sadly they are not always right and they don't always have your best interest at heart (I won't go into all that now).

Lets take Tysabri as example 1. One of if not the number one prescribed MS drugs. Tysabri basically blocks "errant" white blood cells. This drug is targeted toward patients with highly aggressive forms of the disease. The theory behind Tysabri is that MS an "autoimmune" disease attacks its own white blood cells. This causes diminution of the protective sheath that covers the nerves. This complicates communication between the brain and the rest of the body. This in turn brings on all the symptoms related to MS (muscle spasms, stiffness, fatigue and memory and concentration issues etc. etc.). The simplest, basic explanation I have seen of Tysabri is that is keeps white blood cells out of the brain. The key thing is that reduces your probability of additional exacerbations. Has this drug helped people? The answer to this appears to be yes it has helped some people. Dangers are possible development of a brain infection called progressive multifocal leukoencephalopathy or PML. To date 124 people have died from the complication.

CCSVI as example 2. CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis. As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine. CCSVI treatment is a non-operative, minimally invasive intervention usually performed as part of a catheter-basedendovascular procedure. CCSVI treatment employs either balloon angioplasty and/or stent placement to open or clear obstructions from the veins that drain the brain and spinal cord. Again I encourage you to Please do YOUR OWN research on CCSVI. Personally I have had a GREAT breakthrough with my MS having been treated for CCSVI. This doesn't work for everyone but does help a very high percentage of people. While the research is still being done, the help to MS patients is far better then anything currently being offered. The dangers to the CCSVI treatment and the angioplasty. Basically all the dangers involved with standard angioplasty apply. There is a possibility of restenoses on the veins (closing back up). 2 deaths have been tied to the angioplasty procedures I am aware of for CCSVI. One was a stent migration issue (can happen in angioplasty) and the other was a cerebral hemorrhage (can't be clearly linked to CCSVI).

All the complications, dangers and the 124 deaths vs 2 has to make you stop and think. What are the neuro's afraid of? I obviously have my own thoughts on what a person should or should not do based on my experience and what has happened to me.

The bottom-line to all this is please look at the facts and do your own research. There is no right or wrong answer. MS is personal and different for everyone. The answer is what you feel is best for you after you get educated on the facts. It's not what others think is best for you.

YOU DECIDE how to deal with YOUR MS.

We are you + MS

2011-06-10T08:20:00.000-04:00

Great letter I came across this am. (Original post)

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out...... to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

I didnt write this but the words say everything.

The UGLY part of my CCSVI procedure

2011-05-16T09:54:00.001-04:00

Canyon we think about you everyday.

The time is flying by these days. I continue to see the same improvements as I did. I knock on wood everyday. It's funny how you just move on and don't look back until something or someone reigns you in to take a look. I have to admit the "are you sure you should be doing this comments" or my personal favorite "do you release what you just did, 6 months ago there is no way" are good to hear. All is good with my MS and its effect on my life, which would be VERY little!!!!!!!

I thought I would take this opportunity to again thank everyone again for their HUGE generosity and donations. I don't think I can say this enough or in big enough words.

The worse part of the procedure is now staring me in the face. The bills. I wanted to include a basic breakdown of all the costs to me and what my insurance did or did not cover. A lot of people have been asking me, so here it is. I do find it amazing how much money can be spent in a 4-6 hour span when it comes to the medical field. If anyone is interested in what a particular thing cost please get in touch with me and I will give you the figure.

Doctor:

Angioplasty procedure. ultrasound follow up etc.

Billed: $2372.00

Insurance: $636.30

Total bill to me: $1,735.70

Hospital (procedure done at Albany Medical Center):

X-rays, Venogram, Angioplasty, drugs etc.

Billed: $20,313.82

Insurance: $10,698.05

Total bill to me: $9,615.00

Entire Costs:

Billed: 22,685.82

Insurance: $11,334.35

Total bill to me: $11,350.70

I will have another update soon, keep the emails and messages coming it's great to hear from everyone.

April 2011....wow already

2011-04-06T09:50:00.000-04:00

April already…seems like yesterday I went up to N.Y. to be treated. Guess that makes it 54 days since my surgery. As you can probably tell by the fact I haven't posted I have been keeping busy.

Life is outside now as much as I(we) can get. Walking, hiking, horses, yard work and even cutting down, splitting and stacking of some trees. I have also spent some time at the barn doing repairs. All-in-all doing everything I haven't been doing for the last few years. Time to catch up on my life.

It's funny as I go along with my journey I don't realize all the changes that have happened me. Everyday is, well as I see it and how I think on that day. in the beginning after my surgery I was still in the mind set, be careful don't do to much, are you sure you can do this, whats going to happen to me and how many days will it take me to recover. I no longer get stuck with any of that. My limits are physical now. I just do things and move to the next. The only time things hit me is when I hear my wife talking to a friend about what I am doing or telling me "hey do you realize what you are saying and doing?". It really is incredible, to say things for my wife and I have changed is an understatement.

I recently got all the paperwork from my surgery. All the specifics and statistics. I will being doing a post on that soon so I will keep this one short.

Bottom-line I am doing GREAT. I continue to be where I was no changes, no reverting, just the same and just the same is awesome.

Please any of you who haven't been tested for CCSVI please do so. Get treated.

More soon.

Best to everyone.

18 days CCSVI post op!

2011-03-02T11:05:00.000-05:00

Thought it was about time for an update and a little comparison to the old Dave. A quick note if you click the title of this post you can see some videos and pics from my procedure. It has been a great couple a weeks to say the least. I have done things I haven't done in 3 to 4 years. An amazing change for me. So what has been going on and what have I been doing? I decided to take at easy and not do too much my first week back. Week two, however was a bit different.

On Monday 2/21 I went horseback riding for the first time in 3 years. No ill effects what so ever MS-wise, but I did get a bit sore from being out of shape. It is so nice to have my mind keep on going and my body get tired. It's really hard to explain to people who don't have MS. Prior to surgery, cognitive issues, my eye (optic neuritis) and terrible fatigue would all kick in prior to me get physically tired or sore. After riding I decided to give the jacuzzi a try. That's right, a HOT bath, salts, soak the works. Again, no ill effects! Nothing...

After a few days letting my body catch up, on 2/25 I was off on a 2 mile walk that I haven't been able to make in 3 years. 3 YEARS!!!! Surprisingly nothing at all bothered me, not even my body, everything kept up. No soreness no MS issues, just a great walk. I thought a lot about this walk over the next couple days. It wasn't strenuous and it didn't push me physically at all.

So, on Sunday 2/27 I decided to push it a little. I am feeling great, let's do it. Off we went to Cumberland Knob to hit the 2.5 mile strenuous hiking trail (4 YEARS). The hike was serious physical work for me. Rubber legs a little under halfway through. My cardio overall was good. My body however was feeling the hike big time. So I stopped when I needed to and did the entire trail. Again my head stayed clear, no tired eyed, no heat issues, no MS crept in, just the physical tiredness anyone would have.

The very next day on 2/28 I was off again for a walk. After talking it over with Anne I thought it best to keep it short so we settled on a 1.5 mile walk. Off we went through the woods near our home without the dogs. I felt pretty good. My body was a bit sore and tight still from the long hike. Things loosened up and I was feeling great during the walk. So good in fact, when we came upon a creek to cross I decided to go up stream a bit and jump across. Now, some would say this was a typical man not using his head but hey….maybe so…:P I launched off the side of the creek bank, landing fairly hard on the other side. It was bit of a drop down. Landed on my left foot, then the right… Ouch….a bit of a sting in my left heel and in my hand from grabbing the bank as I landed, but I made it! Didn't think much of my foot and we went on and I did the entire walk with no problem. Well, so I thought… All you telling me not to do so much, gather round and say all at the same time: I told you so! As the day went on my heel started to hurt. I bruised my heel pretty bad and by the end of the night was hopping around the house like a champ. It's much better now but I have some soreness from making the jump… guess I am not 16 anymore.

In reflection on these two weeks, having been so inactive because of MS I need to pay attention and actually think before I go making another jump…lol. Overall it's really hard for me to judge my body, what it can and cannot take. How bad has this Dave chassis become? We are on a mission to get things back in shape. Sooner rather than later.

Much more to talk about but I need to wrap this up as it's getting long again. In closing I am going to do a comparison of my symptoms prior to surgery to right now today.

FATIGUE

Was: 8, by far my worst symptom

Now: GONE! All my issues now seem to be physical, due to prolonged inactivity. My body just needs to catch up.

HEAT INTOLERANCE

Was: 7

Now: Still feeling this one out! The jacuzzi tub and the long hike have been the only real tests, but so far I haven't seen anything bother me. I can't wait for the 80-90 degree weather to see what's going to happen. Did I really just say that?

COGNITIVE ISSUES

Was: 5

Now: Gone. Several people have told me even the way I talk has changed. No pauses, I don't have to search for words. No brain shut downs.

OPTIC NEURITIS

Was: 3 It was always there, eye sight fluctuated, had been a 10

Now: 2 It's still there, but I appear to be gaining some depth back. Very slow progression.

LEG CRAMPS

Was: 2 Hadn't been bad in a while

Now: No issues

LEG SORENESS

Was: 4

Now: No issues, just normal physical tiredness from exercise

NUMBNESS

Was: 2

Now: No issues

SHOOTING PAIN

Was: 3 Hadn't had an issue in a while

Now: No issues

Plugged In!

2011-02-16T07:30:00.001-05:00

Landing in N.Y

My CCSVI trip started on thursday February the 10th. The flight up to Albany NY seemed quick. I was anxious to get up there and get checked in. We decided to stay at the Hilton Garden Inn Albany Medical Center. It's attached to the hospital by a glass walkway which leads directly to outpatient check in. A brief walk through some double doors, a left, a right and you are at the elevator to radiology. Max maybe a block from my room.

Albany Medical Center and the hotel.

The night went pretty quick, however every minute that went by the more nervous I got. Keep your expectations in check, Dave, not too high, not too low. Everyone wants to have all their symptoms gone. You want to expect that to happen. You want to start thinking and planning. I forced myself to stay grounded, limiting what I expected, remembering in the back of my mind there is NO Plan B.

Hotel Room

I woke up early. I have to tell you this hotel has the worst clock ever made. It was 2 hours and 10 minutes off, and after 4 of us looked at it, no one could figure out how to change the time. Guess what, you can't. Anne called the desk and without a Phillips head screw driver it's not happening. Fortunately no alarm clock needed. OK, clock rant over. Took a shower and was ready ohhh about an hour and a half early.

Finally it was time to go. My nerves were up there but little did I know I was heading to a new level of nervousness. A place I had never been before. This is it! 7 months of waiting, planning and preparation all down to the next 4 or 5 hours. My life may or not be changing. My wife's life, my family's, friends'. My head started swirling with all the best and worse case scenarios. Dave snap to it, move ahead. I was not at all prepared for what I was going to be going through.

Check in was quick and easy. Then wait to be called. Ahhh the waiting...what's a little more after all this time. Then there it was....Dave... Time to go, off to prep and get my stylish gown. The nurses immediately started busting on me. We need to exchange that gown for a longer one. When they held it up against me and measured it, it didn't cover much below the waist. Definitely need a longer one. 6'4" has its drawback. So off with the clothes and into the gown. IV plugged in, blood pressure (surprisingly decent), questions about eating and then the Quality of Life questionnaire. Whew....got it all done. OK they will be here soon....enter nerves and I mean nerves. All your thoughts are amplified by 100. It seemed I was quiet a bit of the time. Thinking, worrying, hoping, scared, excited, all those feelings were swirling around.

Finally after about 20 minutes the (what I will call) anesthesiologist came to pick me up. Not really sure of her title as she seemed to be a jack of all trades once we got in the room. After a warning on how cold the room was, off we went. Once inside I had to hop over to the main table. Again with the tall jokes. Should we leave his head or his feet off the end of the table? They added some attachments to the tables to put my arms in. On went the blood pressure monitor, electrodes on my chest and above my groin, and then...the drugs started. Only thing left for prep was the "groin". I have to say this really is no big deal, even less of a deal once the drugs start hitting you. I would however like to suggest they actually shave where they are going to going in. In my case they shaved me for no reason. Then came one of the worse parts for me. Straps...across the legs, across the upper body. I felt like Boris Karloff back in the day. Being tied to the table was unsettling. Some final balancing of the drugs and I was set to go. I was talking a mile a minute. They asked questions and I kept on rambling. This part lasted about 5 or 10 minutes. Then I was told I needed to be quiet.....lol. Shut it so we can work, please.

You may feel a small pinch in your groin....it was very small actually, hardly noticed. I guess the other meds had me in a state where the local for the catheter was nothing. From that point on I didn't feel a thing. No pain, no pressure, nothing. The monitors were up and running and time seemed to fly by. People working, talking and I was asked to breathe certain ways at times and that was about it. I remember having to move or arch a certain way as well. Seems that just as things got going it was over. Now, I was in there for a about an hour and a forty five minutes. So don't get the idea it was a 5 minute procedure. Everything got unhooked, pressure on the groin area where they went in. One of my bigger concerns was bleeding from the groin after, but it was never an issue. Back in the recovery area the drugs started wearing off almost immediately. It was slow but noticeable. Anne said I was a little dreamy.

Dr. Siskin with me 2 hours post procedure.

Recovery was pretty basic. One hour laying down followed by one hour sitting up, with the nurse checking for bleeding every 15 minutes. Then eating, drinking...food was ummm, well, terrible. Ate what I thought I had to, to get out of there and that was it. Dr. Siskin came in, we talked briefly about the procedure and that was it. Get dressed you are all set to go.

So what did Dr Siskin find and what was treated. Both jugulars were blocked, the right worse than the left. The azygous vein was fine. I'm sorry I don't have the percentages, I forgot to ask. I should have all the records and reports next week. I have to take one 325mg aspirin for the next 3 months. Tylenol was recommended for any discomfort. The night of treatment my groin and my neck (on both sides) were sore. Other than that I was in good shape.

At the recovery area I decided for that day and night I didn't really want to evaluate myself a lot. I was told right away the grey complexion I had was gone. My head seemed clear but as you can imagine I was a bit tired. Not fatigued but tired. My thoughts seemed to flow well. There was no searching for words or pausing to think before talking. We went out to eat at the hotel and it was smooth sailing. Yes..I admit it.....I HAD dessert....it was damn good too.

The morning after was amazing from the start. Because of the intense day we went to bed fairly early. I woke up at 5am. To say I was different would be an understatement. I pushed Anne... I am wide awake... I can't sit still... I'm getting up. I was bursting with energy. I was plugged in to the world again. Charged with life. All these thoughts raced around. We need to do this, call him, go here. It was an unbelievable change from just 24 hours ago. Needless to say I had plenty of time to get ready for my follow up ultrasound at 10. What a great day.

The follow up ultrasound was the same as the original. No change, all the measurements sitting up and then laying down. I guess this will now be the stressful part of things. Has there been a change? Has anything closed up. I will say this, if things do take a turn, I will be right back on the table. There is no debating that.

I spoke with a friend back in North Carolina over the phone and he commented that he could tell just by my speech that things had changed for me. Amazing what others are picking up that I don't even see.

Heading up to the Adirondacks

The rest of the day was breakfast out, shopping and running around a bit. Not too much sitting until the afternoon. All in all it was a mistake to walk so much. I was feeling so good I didn't really pay attention to things and by 1-2 my groin started to flare up and get sore. My neck discomfort was not too bad. Anne and I decided to drive another 60 miles north to see some friends and stay over night. Back up into the Adirondack mountains where we use to live. Always nice to go back up there. The Adirondacks are special. There were a few things I had completely forgotten. Like the pot holes and heaving roads in the winter. What a mess. I was pretty uncomfortable with soreness, but I kept up all day. While tired from everything, it was not fatigue tired and my head was clear.

The next morning I awoke, bright eyed, thinking, and once again no running to the coffee pot to try and wake up. I was plugged in from the start. The morning went great and we decided to head out for breakfast. Shower, change of clothes etc. As I got ready something very strange happened. I was standing there brushing my teeth thinking, this is fun... brushing my teeth is FUN! It's hard to explain but things like this were such an effort and such a drain for me. Anne must have thought I was nuts running out of the bathroom talking about how great it was brushing my teeth. We had another great day with friends. The rest of the time in NY was much of the same, but I can't say this enough: I was plugged in with a CLEAR head.

Now that I am home I am sure I will pick up on all sorts of "toothbrush moments" and I can't wait to feel and see it all.

The one thing I haven't mentioned in this recap is my optic neuritis. It appears to me that I am regaining a bit of vision. The distances I was having focus issues with have become fewer. I don't have that tired eye anymore. Maybe this is something that will take some time. I can tell you this however, after three years of severe heat intolerance I went in the jacuzzi tub today. I soaked in the heat and epsom salts. No ill effects, no eye issues, no fatigue, nothing but the enjoyment of the jacuzzi. I can't wait for what's next and where tomorrow leads me.

Please, if you have MS take a serious look at CCSVI. Get tested and get treated. It will be the best thing you have ever done to help yourself.

Quick update

2011-02-15T08:45:00.001-05:00

Hello all just wanted to let everyone know I made it back from NY. I am doing really good and keep seeing little things everyday...:D. I started writing my entire story up on the plane ride back yesterday. It appears I may have to have to make a shortened version for those of you that don't want to read all the details on my trip. My NY story is already quite long and I have barely begun.... I hope to have it up in the next couple days complete with pictures.

Best to everyone and thanks for all the responses and support along the way. I can't tell you how BIG you all have been in my story.

I have lots to tell everyone. Truly a life changing trip.

Day 2

2011-02-13T07:17:00.001-05:00

Feeling very awake and clear this am. Even with only 6 or so hours of sleep. My thoughts are clear. The haze, clouds and fog are gone. It seems so long ago. I can't express how nice it is to wake up and not have to fight my way into an alert thinking existence.

Now the bad. About halfway through yesterday soreness has become an issue. My neck is a bit sore but is getting better and better. My groin however is really sore and got worse as the day went on. Now I was pretty active and did a lot of walking but I had pretty bad soreness in my upper right thigh and right groin by 6pm or so. Unfortunately it's still around this am. Although I have no limitations I think less activity today would be wise.

I will keep you updated as things go with the "complete story" once I get back home.

Thanks for all the emails and FB comments. It's great to hear from you all. More soon, I can't tell you how great this is!

After....!!!!!!!

2011-02-12T06:32:00.000-05:00

Well, here I sit at 6:15 am the day after. To say I feel different would be an understatement. I am wide awake, fogless, and not running for coffee to try and wake up.

I will write up an entire recap of yesterday's procedure and how it all went for me. I remember everything from the treatment! It was a great day and things have definately changed for the better for me. I decided yesterday afternoon to wait until today to try and evaluate myself and what I am feeling. I didn't think yesterday with all that happened would be a fair comparison for me. I can tell you this I wasn't tired going our for dinner last night. Even after such a long day.

I feel great this am. Kinda bursting with energy. My thoughts are going a mile a minute.

In closing up this update. I urge EVERYONE I know and everyone that has MS to get tested today and get treated for CCSVI. It will be the best thing you have done to help yourself.

I have tons to talk about and tell you all, more soon.

CCSVI Treatment Day

2011-02-11T07:54:00.002-05:00

Arrived to snowy cold NY on Thursday afternoon. Trip was fine but tiring. Checked in at the Albany Medical Hilton. Very nice hotel and connects directly with the hospital.

It's the morning of my procedure and I am hours away. I thought I would rate all my systems on a scale 1-10. 10 being the most severe. This will give me a base line for comparison after treatment.So here they are based on the last month or so.

-fatigue 8 by far my worst symptom
-heat intolerance 7
-cognitive issues 5
-optic neuritis 3
(always there, eyesite fluctuates, has been a 10)
-leg cramping 2 hasn't been bad in awhile
-leg soreness 4
-numbness 2
-shooting pain 3 minor, haven't had a severe issue in months

Well that's the major list as of today. I am out for now and off to get ready.

9 Days!

2011-02-01T12:00:00.000-05:00

Well I met with my neuro yesterday and got some blood tests back. Sticking with the plan and getting visits to everyone prior to treatment!!!! I want base line with everyone.

I am not sure why but today a light bulb went off in my head. A few of you probably already had these thoughts. Neuros treating MS patients are really only a monitoring station/service. They can prescribe the "drugs", the pain pills, the depression pills, sleep aids, etc. etc and after that…there really is nothing. They can do more tests. They can see if things have changed. They can poke and prod you. Then, frankly after that there is absolutely nothing they can do…..They can say, “Keep your chin up, buckaroo” or “Let’s try a new drug” (if you take them)…..but in the end….there you are…nothing…..ZIP.

Off my soap box and back to my appointment. Overall it went very well. My blood tests were great except my B12 1900 is in the stratosphere. After that I listened to the "drugs" talk again. The "drug" conversation, which in no way was over bearing or anything, went pretty smooth and we moved on. Reviewed my changes in symptoms, talked about sleep apnea (creeping into my life), and of course had what I will call a weak neuro exam. As an example and I will leave this alone I didn't have to walk, take an eye test, or take my shoes off. Then the 800 pound gorilla came in the room.. I asked about his thoughts on CCSVI and guess what. What is that….:(? We then discussed it for a bit. We discussed the trials going on. He asked if I had tried getting into them. Of course I replied yes in fact I have and was denied. Then the next bomb..tic..toc… I am going for the treatment on the 11th!

To me and my wife's surprise this is where things took a great turn. My neuro said 3 HUGE things to us. One, I am not against learning from my patients, two if the interventional radiologist in NY needs any test done please let me know and three he would talk with some local IRs about CCSVI and see what they may or may not be doing. KUDOS! Then there was me and he wanted to be in the loop on what happens. I got his email address and will be forwarding him some information on CCSVI some testimonials and my information so far. This part could not have gone better for us.

So to close this out it was a worthwhile trip to the neuro. I now have a neurological resource willing to learn and grow along with me as I go on with my MS. Good stuff.

9 days……

BNAC announces CEREBRAL VENOUS DOPPLER TESTING $675!

2011-01-28T09:04:00.003-05:00

Chronic cerebrospinal venous insufficiency (CCSVI) research is still in the initial stages.
At this time, the association between CCSVI and multiple sclerosis (MS) is undetermined, and it is not clear whether treating CCSVI has an impact on MS. Recent studies suggest that not all patients with MS present with CCSVI, and that CCSVI can be seen in healthy individuals and patients with other neurological diseases. Nevertheless, many MS patients want to know their CCSVI status.

In response to requests, patients can now be tested at Buffalo Neuroimaging Analysis Center (BNAC) for CCSVI by one of our registered vascular technologists (RVT).

Patients will undergo a Doppler examination of the extra-cranial and intra-cranial veins performed by a member of the BNAC RVT team, trained in the Zamboni research protocol. Recent BNAC studies indicate that the non-invasive Doppler ultrasound approach is preferable for initial diagnosis and for follow-up purposes. It is, therefore, safer while yielding results similar to invasive venography and, consequently, can be recommended for initial screening purposes.

Testing is available Monday through Thursday

Evening hours are available

Patients will be informed of the results at the conclusion of the exam

A written report will be mailed or faxed within two business days

Cost: $675

14 days.

2011-01-27T12:04:00.000-05:00

I quick check in with everyone at 14 days to go!

After talking with Anne I decided to go through and have all my doctors and all my blood tests checked prior to treatment. I have had my blood drawn and should have the tests back in my hands on Monday. Also on Monday I am meeting with my neuro…depending….maybe the last time for some time to come. Don't get me started on neuro's...all though to be honest mine has been really good. Unfortunately she has stopped seeing patients. I will be meeting with her husband (also a neuro) on Monday for the first time. one can only hope he is as good as his wife.

Last up with be Dr. Mehan. One adjustment and look over and I will be easy to go.

14 days until I leave…..FINALLY….

Follow my blog on Facebook

2011-01-25T09:06:00.000-05:00

I have added my blog to Facebook!.

Lots to cover before my trip up to NY. More later this week!.

25 days...a follow up from Steadman.

2011-01-17T11:17:00.001-05:00

I can't help but feel very optimistic............:) Go Steadman!

Friends,

I wanted to send an update and capture much of what I have been experiencing over the past 48+ hours. Yesterday morning, I awoke fresh and ready to face the world. I generally stay sleepy for about the first hour and have to drag my behind out of bed just to get to work – never feeling like I have slept long enough to replenish my energy reserves (even though I generally get at least 8 hours of sleep each night). Once I get going and out the door in the morning, I generally do not get fatigued during the day, however, I do feel more and less energy come and go throughout the day. Yesterday and today have been completely different as I have had a steady stream of energy throughout the day and into the evening. (Case in point - last week I would have procrastinated to send out an email such as this so I could save my energy to spend with time with my daughter)

I can also report that my feet have been warm from all of the extra blood flow – in fact, I texted my wife yesterday while I was in MBA class and told her that I needed to take of my shoes and socks because my feet were getting sweaty! (It is hard to believe that the some folks (neuros) feel that this is a placebo effect as I can literally feel the warmth of the blood that is flowing through my body) My feet are also less sensitive to touch (less ticklish), and I found that I did not need to put on my flipflops or slippers this morning when I got out of bedlike I usually do (because the feet are so sensitive). Also, I have enjoyed the ability to stand up without dizziness or pressure in the head, and having to grab onto something to help myself up (thanks to improved balance and reduction in lower back pain.)

My mental clarity and focus is still improving and my head has also been warm with the new blood flow. Friday afternoon and yesterday I found that I had no clue how to direct my thoughts and how to ‘use’ this newly improved brain. It is in the act of repairing itself, so I just let it go and enjoyed the ride (with a stupid grin on my face)! I no longer feel that I am asserting as much effort to think, process, find words, and remember mundane but important facts (i.e., what was the actor’s name in the movie that we watched last night?). Also, I feel that I no longer grumble about the little things that I used to and that my mental outlook has been changed for the better – my wife appreciates that!

I have been taking it easy and do feel that the body is getting used to working normally again. I never mentally went into the procedure thinking that I was going to have great results, and honestly, the minimum that I have asked for is for a halt, reduction or pause of progression. Is this procedure a cure? No! Is my MS gone? No! Will it take a long time to repair the damage? Yes – because it took a long time to create the damage! Will these results last? Maybe, Maybe not! Like always, I am just taking it one day at a time and I know that this is a piece of the MS puzzle. As I mentioned before, if these results go away tomorrow, I will go back and do it again, and again until it lasts (or I feel that stents are the way to go). I have tasted what it feels like to be almost normal again, and it is much better than sitting around feeling like I am not in control of my body.

Some of my friends have asked about the follow-up and treatment plan. The staff will follow up with a call this coming week to check on me, the doctor will send my report in the next week (by email which I may send questions back), the doctor is always available by email if I have any questions (he has already proven this before the treatment), the staff is always available by phone and email and very prompt (and they are very knowledgeable about CCSVI including Dr. Parikh who is the attending doctor in Durham, and I may elect to go back for a consult or (follow-up procedure if he feels it is necessary) with the doctor when he is in town next (which is about once a month for a few days at a time). He did not put me on any drugs. I did ask about this specifically, and he said that there is evaluation on a case-by-case scenario depending on the severity of the stenosis/blockages and the patients history. I personally feel that he takes a conservative approach to this type of treatment as blood thinners and the such need to be monitored and adjusted in periodic intervals. He did indicate that aspirin may be taken if the individual chooses to do so (I took it before the procedure due to family history of heart-related disease, so I am continuing to do so).

I promise to be honest and upfront with you about my experience – I will not sugar coat. I do feel that ‘repair’ has been coming and going in waves – like a computer trying to reboot, then it is turned off for a few hours, then starts back up again. I certainly hope that it will stay on forever, but I am just comforted to know that I have had some relief, even if minor. Even it all goes away, I will be happy because I know that I can get the good life back again with a safe, simple (and oft performed) two hour visit (btw – the drive is longer and more painful than the procedure). Advances in CCSVI treatment will, in my opinion, be the second line of defense in treating MS. (The first will be steroids to reduce inflammation, followed by soon after by angioplasty).

*If you don’t like rants about neurologists, stop reading here*

I am not kissing my neurologist goodbye – but I will continue to have a few choice words to say to her the next time I see her! If I walk away, then how we she know the benefits that I received from my procedure? As a matter of fact, I told her that I would share this information and reports with her. I have been known to debate the fine points of her ineffective approach to therapy and drugs (she does receive royalties for making grandiose speeches about medications that a) even the pharmacist do not know what the method of action is; and b. work in only like 13% of people) and I have been a little up front with her in past (I will say she takes it in good stride!). I feel that these neurologists (at least the three I have seen) get used to having their power over the weak and the desperate and they understand that they have very little offer.

It is time to challenge the position of their comfy little perch which they have come to enjoy for many decades. MS patients need to ask about CCSVI, new therapies, and challenge the antiquated thought that they have built their practice on. Unlike popular belief that they have no future in a CCSVI world, there is a role for them in MS in the future – whether it be diagnosing the disease (and recommending an angioplasty doctor) or working on the remylination effort - they simply need to be challenged! There is a call to action that must not be ignored.

PS – I wrote this without my glasses on!

Stead

26 days....a friend checks in

2011-01-15T08:17:00.003-05:00

Well it is 26 days until I am treated and the days are going very slow. I received this CCSVI report from a friend who was recently treated and I thought I would share it with everyone. I edited out some specifics. If you want any information please contact me and I will see what I can do. Congratulations to my friend and I am so happy things went so well for him....I CAN"T wait for my turn....

I want to give yall some feedback about my CCSVI procedure in (edited out). The staff at (edited out) are top-notch and treat you like family! It made the procedure an even greater experience. They are knowledgeable about MS and CCSVI and discuss it with you openly if you wish. Two of the nurses at the center have family with MS/CCSVI as well, so they are very compassionate. For those of you unsure about the procedure, they do offer consults with the doctors as well. I had emailed my insurance information ahead of time and they never asked for the card, credit card, nothing….I appreciate that. After signing about 8 forms (HIPAA, etc), I was prepped with an IV and was in the procedure room in 10. I should stop here and say that there are only two procedure rooms, so you get individual attention from the staff all the way around. None of the waiting in line, etc.

Once I got into the procedure room, they immediately prepped me (lasted about 20-30 mins) and then we started. They use moderate twilight sedation and you can watch the procedure on monitors if you wish. I watched from time to time, but the sedation made me want to snooze a bit. The doctor will talk to you throughout the procedure if you wish, and he asked if I just wanted him to be quit. He was also training the local doctor that runs the (edited out). I told him to keep talking by all means so the local doctor can learn the techniques and help out our friends across the state. (The doctor is also doing research with arterial/venous flow rates and asked if wanted to participate. The procedure would have taken 30 minutes longer, so I declined because of traveling and schedules). Honestly, the procedure is about as easy as slipping in ice this past Tuesday. I felt no needles going into the groin, I felt the occasional maneuvering of the wire (which is akin to light tickle), and when the ballooning occurred, I felt that. They warn you before-hand what and where it will be felt. It isn’t painful, but it is very heavy pressure. They squirt a little more juice into the IV just before the balloon!

So, what did he find?

-Right Jugular stenosed just below right clavicle (horizontal ballooning)

-Left jugular stenosed in left neck (same level as my cervical lesions…hmmm) (vertical ballooning – this area is still tender right now, similar to a strained or pulled muscle)

-Azygous vein in chest was twisted in knots

-Iliac Vein was stenosed

(THAT’S FOUR STENOSEES…or is it Stenosi ??!!!)

Technical Data

-No stents used

-Went in on left side

-I will send the report when I receive it (twilight makes it hard to interpret all of the acronyms and such)

-The procedure lasted almost two hours

-The Doctor asked to use my pictures in a presentation in California next month

Results?

-Overall, I feel much lighter! Head feels lighter, legs feel lighter!

-Head feels like blood is moving through it again

-Cog Fog has decreased by probably 75% (I might need sleep as well, 430am was early)

-Significant reduction of spacisity in left side of neck

-I had back pain in mid-back from time to time that may have been MS hug or back problems – well, the ‘hug’ is 75% gone!

-I feel that my lungs and diaphragm are expanded more and I am getting more oxygen

-I have a significant increase in alertness and focus

-My optic neuritis has been almost eradicated (vision wonky just a bit after some ice cream!)

-Balance feels better

-Sinuses on left side feel drained and less stuffy

-Blood pressure dropped by 15-17 points (from my historic average of ~130/87).

It's official!

2011-01-07T10:22:00.000-05:00

Great news! It's official! I am now scheduled for CCSVi surgery on Feb. 11th 2011. When I get all the specifics (via email) I will update everyone. Let the countdown begin. 28 days…tic toc.

N.Y. Trip.....the good ..the bad...and the ugly...

2010-12-04T11:15:00.000-05:00

River feeding the lake. Man I miss the water.

Well I am back at the homestead. Tired, getting organized and catching up. Finally I have been able to sit down and put my thoughts down on my trip to N.Y.

As most of you know I left on Saturday the 27th. We left a few days early (appointments weren't until Tuesday). I really wasn't sure how I would do traveling in the car for 11 hours, no less driving parts of it. The drive up went really well. I was able to stay focused and get in about 5 hours of driving time. We switched over and I really felt pretty good so we decided to keep on going. With the excitement of seeing Dr. Siskin, my family and all our old friends I was pretty amped up. The weather was clear until we got to Oneonta. N.Y, where we were welcomed back with snow, white-outs and crazy ass truck drivers. Nothing like the Northeast in winter! Oh, and CPK, Jersey was no better…:P

We made it to Wells N.Y in pretty good time considering the snow we went through.

Yeah, snow...ughh.

The lake.

Coffee shop at Dr. Siskins

It was great to meet up with Mark and Pat and cruise around the old home area. It's amazing the simple things you never think about once you are away. We really miss the lake and the water. I was a bit surprised at how flat things seemed in the Adirondacks. There is nothing like hanging out with old friends for a few days, catching up, laughing our asses off and having a blast. Special note: Jack, thanks for not chewing may arm off…lol (Mark and Pat's dog).

On Monday we headed down toward Albany and get ready for my appointments. We met with Barbara to go over the paperwork and get the details of the research trial. Dot the Is, so to speak. The facility was amazing and Barbara was very nice, funny and extremely helpful. Next was the ultrasound. The technician was from my mother and father's old stomping grounds, so conversation was easy. I appreciated her heating up the gel :). Of course she was not allowed to say anything about the test. This was the first of 3 areas I could have been excluded from the trial. If the test didn't show anything I was out, which makes sense. No problem, nothing to fix. This is where the nerves seriously started to creep in and my blood pressure went up. Once I finished, we met Dr. Siskin.

Dr. Siskin was, well awesome. Very easy to talk to and very down to earth. We went over my positive test, yes, positive! I will be making another post(s) later about what we learned here. We went over everything he saw from the test and discussed ultrasounds in general. Personally, I am not a huge fan of this as a test for CCSVI as its not as conclusive as I would like to see. Venograms are the way to go. Dr. Siskin agreed to advance me to the next stage (the neurologist). Two down and one to go.

One last appointment, here come the nerves. I forgot about the traffic during rush hour on the Northway in NY. What a joy to have to deal with. Thank goodness it's not a daily event anymore. We arrived at Albany Med and to my surprise, valet parking at neurosciences is FREE! WHAT? Of course you have to tip them, it's only nice. Check in at the desk… I am sorry I don't see you on the list of appointments…do you have paperwork showing your appointment? Showed the paperwork, a phone call and all was fixed. A bit of a wait. After meeting the neuro I learned that she knew she would be late and tried to get a hold of us. I am not sure how they didn't as everyone had our cells and we rolled over our house nubbier to my wife's cell. The neuro was, well very neuro like (not is a good way). Not very personable, not wanting to answer questions and seemed to concentrate only on what she needed to do to get through what she had to, to satisfy the trial paperwork. She reminded me a lot of the head of neurology at Baptist here in NC, here is your number. After going through everything… I did not meet the necessary requirements to participate in the research trial… WTF…after all this.

To say I was disappointed, mad, and disgusted is an understatement. All this effort, time, travel, expense, and it was over just like that…

I realize the requirements are what they are and they are there for a reason. I didn't want any changes to be made or anything to be manipulated. But shiz what a back breaker at the eleventh hour.

So now what, where am I , what does this leave me? What do I do now? Well, it's a simple answer actually. We spoke with Barbara and she assured us I am still on the waiting list with Dr. Siskin for treatment. I now know I have a problem of some kind that can most likely be addressed by the surgery. So I regroup, gather myself up and hope everyone can put up with a little anger and disgust for the next couple weeks (Sorry Anne….love you). Back to waiting on the phone and raising a bit more money. Now I definitely will be going the original route, having to pay for everything.

I want to thank everyone for their support and all the helpful conversations. My road is by no means over. We just have to take another turn.

More soon…..

T-Minus 5 days

2010-11-22T09:33:00.003-05:00

Well 5 days until I am off to N.Y. Getting things ready as I write this. We are driving up this time. Being that I am not sure how I will be on such a long trip we are leaving plenty of time. Have to be up there Monday, get a good nights sleep and it all starts on Tuesday.

Tuesday 11/30

8:15 am Research Consent

8:50 am Ultrasound

9:30 am Appointment Dr. Siskin

Wednesday 12/1

8:45 am Appointment (neurology)

From there I would guess we schedule the date for the venogram and the treatment (real or not).

Starting sometime on Saturday I will keep a running report and will touch base as often as I can keeping you all up to date with news, pictures, and what ever else may come up.

Thanks again for all the support and well wishes along the way. It means a lot.

....here we go!

Treatment!

2010-11-11T09:39:00.007-05:00

As most of you know I have been researching as much information on CCSVI and the liberation treatment as I can and how it relates to MS. I was so blown way by everything I saw, the videos, talking with people and what I read about that on the second week of June I decided to move ahead and get the treatment. I called and got on Dr. Siskin's waiting list and I put up liberatedave.com. I have been waiting for news and my date ever since.

During my months of waiting and with my resolve intact a few new things came up involving CCSVI and MS. First was the HUGE snowball of what this treatment was doing for a lot of people with MS. Then all the great videos people have continued to put up. Some of the before and afters involving treatment are truly unbelievable. People are getting help even while the neurologists, pharmaceutical and others fight against CCSVI, its correlation to MS and the people getting treated. Please keep in mind not everyone with MS has CCSVI and not everyone is helped with the angio treatment. The percentages though speak for themselves…..

I was really disheartened by what I saw the US doing because of what I will call the "medical business influences" Very little, to no press coverage to speak of and then out of no where things have started to take off. Press coverage, newspapers, TV news, and of course the internet. While not huge public push via the news a great start. Then the US entered into double blind studies seeking out people with MS to participate to help determine if venous angioplasty is an effective treatment for chronic cerebrospinal venous insufficiency.

After a serious look at everything about the trials, bouncing all the pros and cons off my wife, I have decided to take part in the trials that Dr. Siskin is undertaking in Albany N.Y. While it does have the possibility of putting off the actual treatment for me for a year or so, I personally think this is bigger than just me and it's the right thing to do. These trials have to happen, they have to have the volunteers and they have to be done yesterday so everyone suffering can be helped and can get what they need. So with the help of my Facebook family and the information supplied here (Click Here) I got involved and signed up.

On Thursday November 4th I got a call from Dr. Siskin and we went over all the preliminaries, information on the trials and my history with MS. After we talked I was even more eager to get involved and take part. Tuesday the 9th was when I first talked with Barbara and started to schedule dates and times of what will happen and when.

I will be starting everything on the week of November 29th. There will be several appointments, evaluations and the test(s) over that week. Barbara wanted to talk with Dr.Siskin about the specifics and to see if we can fit the procedure in with all the other stuff with one trip. I should know more about that by the end of this week. Once I have all the specific times and dates I will get you all my plans. I also plan to have updates and pics of everything as it happens for everyone so keep an eye out as things get closer.

Very exciting!

A couple notes:

Congrats go out to Bill for winning the Sedona Auction.

If you have an extra $5.00 please take the time to donate to the trials. Denise is doing a great job at keeping this organized and we are getting closer to our goal. Click Here

Update October 4th 2010

2010-10-04T09:16:00.003-04:00

(Montana & Daisy in the pasture)

Hey all its been some time since I have let you know how things are and what's happening with my treatment, CCSVI in things in general, so here we go.

As far as I go I am doing OK. Rough month or so overall. My apologies if I haven't been myself and been in touch as much as normal. For the most part I have been having the "Normal Dave" issues which seem to be for varying degrees and longevity. The list for the last month or so is the dreaded extreme fatigue, heat issues (MUCH better with the weather change), optic neuritis (creeps in/out), cognitive issues and of course the sore/cramp like symptoms I sometimes get. I also seem to have these rare flare-ups what I can only describe as bone aches and pains. It feels like all my bones hurt and everything is rubbing on each other. The symptoms seem to last 2-3 days, give or take. This has happened to me 2 or 3 times over my time with MS. Pretty uncomfortable as you can imagine. Just have to weather the storm and try not to get PO'd about it. Other than that I think the weather change in general will do me a lot of good. Time to get out of the house!

CCSVI

A lot going on in the world of CCSVI. Two US (yes that says US!) double blind studies have started on the correlation between CCSVI and MS. Hundreds of people will be taking part between the two studies. This is VERY important for MS suffers and can't move along fast enough. If you are looking for details or want to get involved get in touch with me. Personally I am doing all I can do to get involved and help. I haven't gotten complete confirmation but it appears I may be taking part in one them. Again as with the procedure appointment this appears to be another waiting game for the "phone call". When will the waiting be over ....ugh... frustrating?

The basics purpose of these studies:

The study is being done to determine if venous angioplasty is an effective treatment for chronic cerebrospinal venous insufficiency (CCSVI). In this condition, areas of narrowing or blockages are present in the internal jugular or azygos veins (veins which drain blood from the central nervous system) and these blockages may be associated with symptoms classically attributed to MS. Therefore, angioplasty may help to improve the symptoms associated with CCSVI and multiple sclerosis (MS). In this study, the investigators will evaluate the effectiveness of angioplasty in the treatment of CCSVI by comparing two the outcomes of two groups of patients: one group with CCSVI diagnosed on a venogram and treated with angioplasty and one group with CCSVI diagnosed on a venogram but not treated. The patients enrolled in this study, and the neurologist evaluating patients after the procedure, will not know whether or not they were treated with angioplasty.

Fundraising

Thanks to everyone who has chosen to help. The words don't seem to be enough. I haven't reached my goal and I am still working hard to raise money. If you missed it the NYC auction ended and we have a new one for a 4 day stay in Sedona. This hotel and area are unbelievable. If you know anyone who may be interested you should let them know. This auction will be up on November 5th. Check it out at http://www.liberatedave.com/rouge.html. Any help is greatly appreciated.

I know a lot of you donated to my treatment and is GREATLY appreciated. A few of us involved on the trials are also trying to help raise some funds for help there as well. If you can spare $5 please help with this drive. Got to http://clinicaltrial.freewebpages.org/index.html and make a $5 donation.

I will cut things here as to not make this to long. There is more I will post in a week or two. Great things going on out there! Keep spreading the word on CCSVI.

SEDONA ROUGE AUCTION

2010-09-13T13:03:00.000-04:00

First, I would like to congratulate Mike on winning the Hotel Rivington auction for NYC, it's an awesome hotel! Thanks to everyone who bid and took part in the event. Mike is sure to have a lot of fun in NYC.

New auction I was lucky enough to receive last Friday. It's for 4 night suite at the Sedona Rouge Hotel and Spa. This auction will be up on Friday the 5th of November. Please don't wait until the last day, last night etc., as I had several people send in some bids after the Rivington auction was over and they missed out. If you know of anyone who may be interested please pass this auction along. This is another spectacular hotel. All the specifics are here: http://www.liberatedave.com/rouge.html. Good luck to all!

CCSVI Lecture by Dr. Andrews (part 1 of 2)

2010-09-02T13:29:00.003-04:00

This is a 29 minute lecture that reviews MS, CCSVI, and the literature that supports the CCSVI concept.
Excellent reference for doctors or patients who have no background with CCSVI at all.
Well done!
Click the title above for the link.

STENTS

2010-08-24T10:11:00.000-04:00

I have come across a bit of information on some venous stents that I wanted to forward to everyone. While not a solid solution yet for CCSVI it's obvious things are moving tin the right direction.

WALLSTENT® Venous Endoprosthesis with Unistep™ Plus Delivery System

What is it? The WALLSTENT Venous Endoprosthesis (WALLSTENT) is an implantable stent, an expandable, tube-like scaffold that is mounted on a flexible wire called the Unistep™ Plus Delivery Catheter. It is used in hemodialysis patients who have a blockage in a major vein near the heart called a central vein. This blockage could lead to failure of the graft that allows the patient to be connected to the dialysis equipment. The WALLSTENT is threaded into the narrowed portion of the vein, where it expands and holds open the vein's inner walls. The larger opening allows an increased flow.

Entire post: http://ccsvi-ms.ning.com/profiles/blogs/thank-you-denise-manleyfda

From Boston Scientific on this stent:

Wallstent® Venous Endoprosthesis with Unistep™ Plus Delivery System

The Wallstent Venous Endoprosthesis is indicated for improving central venous luminal diameter following unsuccessful angioplasty in patients on chronic hemodialysis with stenosis of the venous outflow tract. Unsuccessful angioplasty is defined as residual stenosis ≥ 30& for a vein ≤ 10mm in diameter or ≥ 50& for a vein > 10 mm in diameter, a tear which interrupts the integrity of the intima or lumen, abrupt lesion site occlusion, or refractory spasm. The vessels that can be treated with the Wallstent Venous Endoprosthesis are the innominate and subclavian veins, ranging from 8.0 mm to 15 mm in diameter.

Notes:

This particular stent has been in use for years. This recent FDA approval was only for two very specific veins at the subclavian level.

Wallstents are made of stainless steel, meaning that any patient getting them would not be able to undergo MRI studies after implantation, not a good thing for people with CNS problems. Article: http://radiology.rsna.org/content/204/2/343.short

Additional information: Summary of Safety and Effectiveness and labeling are available at: http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cftopic/pma/pma.cfm?num=p980033

Stentys self-expanding stent Video: http://www.youtube.com/watch?v=D8bx99ZA-eU

Note:

Interventional Radiologists have recently reported to patients that there are even newer stents with even greater radial pressure. Reminding patients that stent placement is rare anyways.

CCSVI Touching Base

2010-08-17T09:41:00.001-04:00

Well its August 17th, two months since my initial phone call to the "clinic". I still haven't heard anything from them. I have been keeping up on others making first contact, getting scheduled and having the treatment. It appears the line has gotten very LONG. On a bothersome note it also appears I may be waiting longer than I anticipated but no one really knows (UGHHHH). Waiting and not knowing is a real killer.

As far as my MS goes the summer has taken its toll on me. My heat and fatigue issues are what I will rate a 8 out of 10. Definitely the worst they have ever been. I have very limited energy these days and NO heat tolerance at all. 15-20 minutes in the heat and I am done. Everyday seems like a test these days.......can be a bit frustrating.

On the medical side of my life I am off to see my Atlas Orthogonist tomorrow (awesome) and I am going for my 6 month to my neuro next week. In addition blood will be taken this week so they can test all my levels.

The fund raising is moving ahead and I can't thank everyone enough that has gotten involved. Keep an eye out for information on the Sedona, AZ hotel auction. It will be going up very soon! It will be very similar to the NYC one but 4 days!

More soon keep the emails coming everyone its great to hear from everyone.

FARMVILLE FREAK

2010-08-02T11:47:00.000-04:00

FarmvilleFreak.com has joined in to help me raise money for my treatment and well as raise awareness on CCSVI and Multiple Sclerosis. I can't thank them enough for the generosity and support!

International Society of Neurovascular Disease

2010-07-29T11:42:00.001-04:00

International Society of Neurovascular Disease formed this past week at the CCSVI Symposium on July 26 in NYC if you missed it (a scientific organization to study neurovascular disease)!

Then i ran to the stores to get breakfast and lunch for a group of us who were going to work on setting up the ISNVD, the International Society of Neurovascular Disease, a scientific organization to study neurovascular disease. We agreed that all NV disease would be our focus, but that ccsvi would be a particularly detailed focus early one. We need to organization to focus research, to share that research and to create consensus. Also attending the meeting were robert zivadinov, mark haacke, david hubbard and mark Godley and fabrizio and his assistant Alarea. On the conference call were franz shelling, paolo, and someone whom i do not know. finally mike dake made a short communication but was on vacation at this time and left early.

So we now have an academic voice. Paolo will be the first president. This will be good.

CCSVI.ORG has launched!

2010-07-26T09:34:00.000-04:00

This is one of if not the best CCSVi resource on the web. Dr. Haacke and others have done a tremendous job on getting this up and running. Congratulations.

Pass it along!

http://www.ccsvi.org/

Liberation Treatment (personal report)

2010-07-23T10:53:00.001-04:00

A friend of mine was liberated on Tuesday! I thougth some of you would be interested in her progress over the first 24-36 hours. Awesome stuff! I can't wait for my turn!

First 24 hours:

Last night right after procedure "can tell you that my right leg feels the same as my left leg for the first time in years"

This am "I think my vision is clearer as well! Am not fully awake yet, but my head doesn't feel as foggy as it usually does...YEAH

WOW, that's all I can say. OK not really.... My leg still feels back to normal! And we had breakfast outdoors overlooking the beach...and though it was VERY hot, I am absolutely fine!!! Previously, it only took 5 mins in heat or sun to have the optic neuritis kick in and just plain wear me out and would take hrs to recover.

36+ hours:

The appt with the neurologist went well. She said in some areas I was completely back to normal…I did not fall over with my eyes closed, feet together and head back…which I did the previous day. They time how fast you can walk certain distances, move pegs to and from a magnetic board….and all those areas had improvement. My heat intolerance has improved 10 fold. We spent 2hrs sitting on the beach…during the hottest time of day! Luckily found some shade. But even so…I am not totally wiped out. And my optic neuritis didn’t kick in because of the heat. It may not sound like lot, but man…it really is a huge change!

Thoughts CCSVI, Fund Raising and Friends

2010-07-21T08:57:00.002-04:00

Quick update on things.

The fund raising is going well. I am very humbled by the people that surround me in my life. I can't find the words to express my gratitude or thank everyone enough. Thank you all for getting involved, fund raising and donating to help me get my treatment. With your continued help I am going to get the money needed to pay for this treatment!

I would also like to thank everyone that is helping me spread the word on CCSVI and MS. CCSVI is such a huge help for those with MS. The "people" spreading the word seems to be the only way to get the word out these days in the US. It's very unfortunate. I still hear of, or talk to people that have never heard of CCSVI and thats a sad sad situation. Please check out the new 3 days post CCSVI video I added to the left. Keep spreading the word!

One of my FB friends has the procedure last night and is doing well. She was very tired last night so her report was understandably short after the procedure. A quote from her initial report "can tell you that my right leg feels the same as my left leg for the first time in years!". I can't wait to hear how she is today and how things progress the next few days and weeks. Very Exciting.

As far as I go.....still awaiting my phone call from the doctor... Waiting is really hard. No definitive treatment date, no date for the phone call to come...its a killer. I will let everyone know what's going on as soon as I know.

Thanks again for all the support and continued help. There is no way I could get through this without my wife, family and all of you.

HOTEL ON RIVINGTON in NYC! Fund Raising Auction

2010-07-14T16:11:00.003-04:00

Hey everyone I wanted to pass this along I was lucky enough to have someone donate a 2 day stay at this hotel. I added it to the site.

Fundraising auction has been added at LiberateDave.com! 2 nights in NYC at the 21 story glass towered Hotel Rivington. Voted the Best Hotel in NYC by the London Times. King Room complimentary of room and tax charges. If you know anyone who is going to be taking a trip or wants to visit NYC pass it along. This Hotel is AWESOME!

Professional CCSVI Symposium: Monday, July 26 in NYC!

2010-07-11T19:15:00.002-04:00

Some highlights on the info.

Patients---please refer your IRs to this upcoming conference:
The Departments of Radiology and Neurology of SUNY Downstate Medical School in Brooklyn, NY, are pleased to sponsor a symposium on the treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) on Monday July 26 at 9am in the Alumni Hall of Downstate's Educational Building.

We are pleased that Dr Fabrizio Salvi, Dr. Zamboni's neurologist partner, will attend this meeting. Also reporting their experience will be Tariq Sinan, the interventionalist who leads the Kuwaiti National Trial, Gary Siskin of the Albany Medical Center and Salvatore JA Sclafani of Downstate.

The goals of this conference will be to review the concept of CCSVI, ,to illustrate the various imaging modalities and to describe the techniques and challenges of the procedure.

The audience is encouraged to bring Powerpoint presentations of interesting or challenging cases to share with the audience during our final session

The seminar will occur on July 26 beginning at 9 am. There will be no charge for registration. Please email CCSVISymposium@gmail.com if you plan to attend so that space will be reserved.

Click the title above for the full info on Facebook.

My start with CCSVI and the Liberation Treatment

2010-07-07T09:50:00.000-04:00

As some of you know I started on the path to getting the Liberation Treatment. The updates I post will help you learn more about CCSVI and the procedure, and might help those who are undecided whether or not to pursue treatment. However, because of the United States' stance (don't get me started) on CCSVI and the Liberation Treatment, information like the exact location(s), doctor(s) etc. will be kept VERY general.

My current MS related issues are: extreme fatigue, temperature intolerance (hot & cold), cognitive lapses, optic neuritis, leg cramps, numbness, shooting pain, diminished skin sensitivity. Everyday is a new day with varying issues from this list. Most of you with MS already know waking up everyday there is a period of self examination to sort out what type of day it is going to be.

It was a long process for me to sort out if I wanted to have the treatment or not. My wife and I have done extensive research on it and I have given it a ton of consideration (understatement). The sooner you are treated the better. Waiting to decline and experiencing more issues serves no purpose whatsoever. Angioplasty is done every day all over the world. I suspect some might be hesitant or scared to some degree. Personally, the *scared* part can't come in to it. I do have my have second thoughts, but all of it needs to be put aside so I can move forward. This "procedure" will help me, my everyday life and my wife (how she does it, is amazing). That's what matters.

Below are the landmarks so far.

6-14-10 marks the first steps taken towards CCSVI testing and treatment. Have to say I was a bit nervous about getting things going. I called the doctor and have been put officially on the waiting list. I should hear back from the office within 72 hours.

6-17-10 I received a call from the doctor's office (more nerves). They recorded all my information and will investigate whether the procedure might be covered in part by my insurance company. There are few insurance companies covering the necessary tests and treatment for Venous Malformation (NOT MS) at this time. I find it really disappointing that someone can walk in off the street with vein and artery issues and be treated, but if the words MS come up it's forbidden. The doctor will call personally in 3-4 weeks to discuss the process in depth

7-6-10 I received an email confirming my place on the waiting list. Next up will be a phone call from the doctor with the exact date for my treatment!

To help me afford this treatment I put together a new website, LiberateDave.com. My purpose in developing this site was twofold: to help people understand CCSVI as well as to raise money for my own Liberation Treatment. Please check out the CCSVI section, there is a lot of good information, videos and links. I will be updating it constantly.

I want to thank everyone who has already shown extraordinary compassion and generosity.
I absolutely could not do this without you.

Please feel free to contact me any time with any questions you may have on CCSVI or what's going on with me on my journey.

HOLY CRAP! CCSVI in the NY TIMES!

2010-06-28T17:32:00.001-04:00

I have to say I am in total shock that the NY TIMES has picked this up and is reporting on CCSVI!

Is this a turning point here in the US press?

THE ARTICLE

Clinical trial in Buffalo start 'Liberation Treatment'

2010-06-28T17:13:00.001-04:00

I applaud the BNAC and their continuing efforts to get this done. It's great to see people stepping up and getting this work done in some kind of timely fashion!

Now on the other hand there is the US press. ZERO coverage of this. Other countries are reporting away on it. Unfortunately for us the pharmaceuticals run the US.

Researchers at the University at Buffalo are about to launch North America's first clinical trial to test the said...
iberation treatment," an experimental therapy designed to halt the symptoms of multiple sclerosis."

CMAJ Editor-in-Chief Dr. Paul Hebert and Deputy Editor Dr. Matthew Stanbrook note that several MPs in Ottawa have recently lobbied the federal government to invest in research into the controversial treatment. They note, as well, that patients have held well-publicized demonstrations, demanding access to the liberation procedure -- which they applaud.

Patients should insist on evidence. They should also insist on having their views represented when decisions about where to spend research dollars are made, said...

Entire Article

CCSVI Treatment update.

2010-06-23T08:49:00.000-04:00

Just a quick note for those looking into the procedure and having it done. The "doctor/facility" I am involved with has just changed there process for bringing people in and scheduling them. Prior to this you called, got on a waiting list, the facility called (within 72 hours) did the preliminaries and then the doctor would call you 3 -4 weeks later to go over all the specifics and any questions. Since there had been a HUGE influx of calls up to 60-70 a day now. They have changed the procedures a bit. At the doctor call stage you will now get an email and the doctor will only contact you once you have a date for treatment.

There are several reasons for the change. The obvious is the huge amount of calls. The second is people taking up large amounts of time only to cancel out because they have found an alternate option for treatment. I am not sure why people would want to waste the doctors time like that but I can fully understand the doctor needing to prioritize things. I would expect him to adjust things to deal with the people he will actually be seeing.

CCSVI and MY Liberation treatment (YES MY!)

2010-06-18T09:15:00.000-04:00

BIG news for me I have started the process to get the Liberation Treatment. I have gotten on the "list", I have discussed the preliminaries with the facility, and am awaiting my phone call from the doctor. Now with every step there is a waiting period but I have lots to do and lots to fill you in on. This is a VERY exciting time for me.

I will be launching a new website very soon that will help people learn about CCSVi, the site will also have information on my treatment and chronicle every step of what is going on with me and how things have effected me. My blog will be the day to day source for me and have the most in-depth information. It will become a main extension of my new site.

More on CCSVI, my new site and of course how everything is effecting me very soon.

I wish everyone the best and appreciate all the well wishes and help.

SPOONS

2010-06-13T22:36:00.000-04:00

This isn't my story but it hits home and is so true....

My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.

As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know?

I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to mehaving MS.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the "spoon theory" was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked her in the eyes and said, " Here you go, you have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.

She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become?

I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of "spoons." But when you have MS and you have to plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.

I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, "no, you don't just get up. You have to crack your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!" I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MSits just not that easy.

I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared."
It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my "spoons."

After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste spoons and I choose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn't just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."

National MS Societies are going after CCSVI to disprove it.

2010-06-12T12:22:00.000-04:00

I can't tell you how mad this makes me and how poorly I now see the National MS societies. THey Will NEVER get another dime from me.

http://www.facebook.com/note.php?note_id=403618352210&id=11079628229 7

Today, the gray area has been eliminated. It's now just black and white. We have been patiently waiting to see if the National MS Societies in Canada and the US were actually going to go to the specialists who understand CCSVI in patients with MS. Drs. Dake, Haake and BNAC were all applicants for funding of their research. I know there were others who have studied CCSVI in patients and applied for funding. None of these very experienced doctors were given any money. No vascular doctors were awarded any research grants.

In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.

An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on ThisIsMS.com tonight-regarding the study--

"I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.

He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it."

http://www.thisisms.com/ftopic-12178-30.html

So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.

Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.

I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.

Buffalo Neuroimaging Analysis Center Newsletter:

2010-02-05T10:56:00.002-05:00

For those of you that want to keep up on Buffalo's research.

Buffalo Neuroimaging Analysis Center Newsletter:
Volume 1 Issue 1, February 04, 2010

Sign up link:
http://www.bnac.net/?page_id=539

Direct link:
http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-201 0.pdf

OMG!! Its actually happening, CCSVI!

2010-01-26T11:15:00.001-05:00

THIS IS HUGE NEWS!

News from Dr. Zamboni- CCSVI lesions classified as congenital
Today at 10:47am
Received an e-mail from Dr. Zamboni this morning-

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-

http://www.ncbi.nlm.nih.gov/pubmed/20087280?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1

This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

Dr. Zamboni has been speaking to medical panels around the world. Yesterday was a "4 hour machine gunning of questions" by the Italian, Canadian and US MS Societies in Milan- Dr. Zamboni said he was able to answer all the questions with scientific evidence, and was quite pleased with the meeting's outcome. He'll be in North American soon.

Some thoughts on CCSVI

2010-01-02T11:04:00.000-05:00

The Liberation Treatment is based on new findings that CCSVI (Chronic Cerebrospinal Venous Insufficiency) blockages have been found in the jugular veins and/or the azygos vein of all MS patients tested. A simple 'balloon' or ‘stent’ procedure to open the veins can be used. This may be the cure!

I have been following all the new reports, news, Facebook groups and forums on CCSVI. It seems the more news we get the more questions we have. One of the big (simple) questions no one seems to be able to answer is: if there is a blockage anywhere why not treat it? Does it matter if you have MS or not? If you have a heart related blockage it's fixed. If you have blood clots or issues in your legs they are fixed, no questions asked. If anyone has a blockage in their jugular veins and/or the azygos vein why isn't it fixed asap? It's an obvious problem IF IT'S BLOCKED.

I am VERY encouraged by the reports people have been posting after having the procedure. It appears that at least 3-4 people a day are having the liberation treatment (NOT in the US). It would be of great benefit to everyone if these people were in a professional study and being tracked on their progress and what is happening with them. Sadly the wheels turn slowly and things are not in place yet. Hopefully some day soon.

A few things I have noticed
1. CCSVI has a REAL place involving MS.
2. People are moving ahead with the treatment on their own, regardless of the "unconvinced" and non-support from insurance companies.
3. People with MS having the procedure show marked improvement in their MS symptoms.
4. There is a great ground swell in the MS communities to get this research going.
5. The US is keeping this story very quiet in the news and in the public eye. Why? One can only speculate. Ahh...pharmaceuticals come to mind immediately.

I will have a lot more on this subject in the future I have added some links and information below I have gathered if you want some additional information on CCSVI.

News reports:
CTV NEWS (lots of videos and reports.
Links:
This is MS
Facebook group CCSVI-in-Multiple-Sclerosis
Facebook group MS Liberation Treatment (CCSVI)

There are many small things you can do to help your vascular health while waiting to be tested or treated for CCSVI. While these actions won't get rid of any venous obstruction, they can help your whole body and maybe slow down some of the reflux and damage from jugular stenosis. Again, I'm not a doctor- these are just some common sense steps you can take right away.

1.Eat a heart healthy diet! Lots of good leafy greens, fruits and veggies. Limit saturated fats (like red meat) and stick to lean, white meat protein. Fish is a terrific choice. Stay clear of man made fats and anything the has too many ingredients (like overly processed foods.) No fructose corn syrup or transfats. Eat a good, whole food diet- like the Best Bet Diet or Dr. Swank's MS Diet.

2.Move as much as you are able. Exercise- whether it is a stationary bike, seated exercise, water aerobics or yoga- is good for your circulatory system and will keep blood flowing.

3.Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.

4.Alcohol is OK...but only small amounts. A glass of wine opens up blood vessels a bit...but any more than one drink becomes constrictive.

5.Get some sun on your face. Vitamin D helps the body utilize oxygen and is a vasodilator. If you have no sun in your area, try a sun lamp and take a vitamin D supplement.

6.No more smoking. Sorry. Cigarettes are vasoconstrictors- they close up blood vessels and can make stenosis worse, That's why we've seen so much about smoking and MS in the news lately. Cigarettes actually slow down the immune system...so you'd think they'd be good for MS, if MS was autoimmune! But cigarettes are linked to MS progression. In the CCSVI paradigm, that's because they inhibit good blood flow.

7.Look into inclined bed therapy. Raise the head of your bed about 4 inches. Use a 2x4 board underneath the head of the bed. The jugular veins are the only exit route for blood from the brain back to the heart when we lie down flat. If you sleep tilted up a bit, your vertebral veins can help out. Don't use pillows, this will crimp your neck. Use a board under the bed. It may take a few nights to get used to, but we've been doing it for awhile.

Part XIII

2009-12-08T09:40:00.000-05:00

In doing some review, I haven't updated my blog on what I am taking these days as far as supplements and vitamins. So here it is, the complete updated breakdown. I am not taking the recommended amounts on any of them so I have left out what amounts. My nutritionist aides me on what amounts I need for me. All my levels are tested as as needed. Everyone is different I would recommend you see someone to help make sure you are using things YOUR body needs in the doses YOUR body needs. I can't stress this enough. NO TWO people are the same. The recommended doses could be doing very little if anything or on the other side they could be doing to much. Be smart get tested and get help.

Bio-D Mulsion Forte (Biotics Research)
Supplies vitamin D3 in an emulsified form to aid in uptake and assimilation, especially important for those with malabsorption issues.

Bioctasol Forte (Biotics Research)
Intended to increase energy. Nutritional support for oxygen utilization by muscle and nerve tissue. Supplies octacosanol (from rice) with antioxidant enzymes SOD and catalase.

Nuclezyme-Forte (Biotics Research)
Supplemental source of RNA and DNA with synergistic vitamins and mineral components.

Optimal EFA Sirt Supreme (Biotics Research)
Highly concentrated essential fatty acid blend providing an extremely effective combination of EFA, DHA and GLA, with all natural mixed tocopherols formulated to be high in y (gamma)-Tocopherol..

My B-Tabs (Biotics Research)
This uniquely formulated combination of vitamins supports many metabolic functions including energy production, enzyme synthesis, and antioxidant activity. Research shows that Adenosine Monophosphate (AMP)is a precursor or building block for ATP. AMP is converted to ATP by the enzyme ATPase. AMP is fundamental in phosphorylation reaction and constitutes a vital metabolic link in energy, transfer mechanism, muscular contractions, enzyme reactions, carbohydrate and fat metabolism. Adenosine is a naturally occurring cellular metabolite. It is one of the four purine nucleotides responsible for protein synthesis. Also shown to help in areas such as obesity, chronic fatigue syndrome, immune system, nervous system, fatigue, stress, sleep patterns, herpes simplex, shingles, epstein barr virus, multiple sclerosis, pain, bursitis, tendinitis, tenosynovitis, chronic thrombophlebitis, varicose vein complications.

L-Carnitine HCI (Biotics Research)
Supplemental source of L-Carnitine, an amino acid like compound. L-Carnitine plays a critical role in fat metabolism and energy production, and therefore supports healthy heart function. L-Carnitine is derived from meat sources in the diet, and is therefore often found lacking in those on vegetarian type diets.

Phosphatidylserine (Biotics Research)
Supplemental source of this important phospholipid which is a structural part of biologic membranes. Phosphatidylserine is involved in signal transduction activity, and may positively impact cognition.

Acetyl-L-Carnitine (Biotics Research)
Found throughout the central nervous system (CNS), Acetyl-L-Carnitine plays a key role in CNS metabolism, offering a source of acetyl groups for the synthesis of acetylcholine, an important neurotransmitter, and thereby supporting healthy brain function.

Padma 28 (EcoNugenics)
Comes from a traditional Tibetian herbal formula that has been used for centuries to support lifelong health. This natural formula is based on the Tibetan doctrine of maintaining a healthy equilibrium in your body. Padma was formulated to gently restore a healthy balance to revitalize your body.

B12-2000 (Biotics Research)
Lozenge supplies high potency levels of Vitamins B12, folic acid and B6. Each is important in a wide range functions, and the status of each imapcted by a number of pharmaceutical compound

Exercise related more so than my MS.

Intezyme forte (Biotics Research)
Proteolytic enzymes are known to break-down proteins into amino acids. Therefore, proteolytic enzymes can be used to support the body's digestion of protein-containing foods. Proteolytic enzymes have also been shown to facilitate tissue healing after injury, presumably by breaking-down products of inflammation.

Oorganik-15 (Biotics Research)
Organically complexed methyl donors and acceptors. Methyl donors are just that, donors. They assist with various metabolic conversions. Examples that you may be familiar with are dimethylglycine and trimethylglycine. OOrganik-15 enhances oxygen utilization and complexes free radicals.

Amino Sport (Biotics Research)
A broad spectrum amino acid formulation. Useful for bodybuilding and as specific support for rehabilitation protocols.

The Liberation Treatment: A whole new approach to MS

2009-11-30T10:31:00.001-05:00

A very interesting report on a possible new approach to MS. I hope more people jump in to see where this will go. It appears most of the "Main Stream" is dismissing it at this point.

VIDEO

Happy Thanksgiving

2009-11-25T11:28:00.004-05:00

Well the holidays are here and everything is flying about. Where to go, what to do and what to eat? What new foods am I going to try this holiday season on my diet?

It can be hard traveling on a strict diet. People in general do not understand that in my/our position(s) it's not a casual diet to lose a few pounds. I am on this diet until there is a cure for MS. To put it plainly, there is ZERO cheating, as in NONE, EVER. It has now become part of my life.

After a year plus on the diet I still get friends, family or others that say things like " have it just this one time" or "it won't hurt you to have this here and there". The answer is YES IT WILL. While I know all mean well and in their own way they are trying to make me feel better, please try to understand. It's not an option for me or others on this diet. If you want to help those of us on the Swank MS Diet cook and put out foods we can eat. For me it has become easy to walk past the butter laden foods, cookies, cakes, pies, ice cream (Did I just write that? miss my ice cream...) and all the other stuff that I use to eat with abandon during holidays.

So to move on, what will I have for my thanksgiving holiday you ask? Well everything from turkey, potatoes, salad, corn, stuffing, bread, and homemade pineapple upside-down cake with frozen vanilla low-fat yogurt. We Swankers don't have to miss much as long as we do our research, planning and do a lot of home cooking. What are you having this year?

In closing I would like to wish everyone a Happy Thanksgiving.

Swank MS Foundation Fund Raiser!

2009-11-10T15:13:00.007-05:00

I have put together a project to help raise some money for the Swank MS Foundation. Proceeds from each purchase will be donated to the Swank MS Foundation. I have put together several designs and products. Please visit the shop and check it out. Also please take time to visit the Swank MS Foundation to learn more about it and what the Swank MS Diet is all about.

PART XII

2009-09-19T14:47:00.003-04:00

Annual MS appointments.

Well it has been one year since my onset of Optic Neuritis. One year since my eye doctor turned to me and said there is nothing structurally wrong with your eye, you have MS. Seems like lights year now with all that I have learned, dealt with and continue to fight through. The emotions, the fear, the anger, the empty feelings of being lost and everything else that comes with the introduction to MS into our lives.

Well good news I am in better shape than I was a year ago at his time. Looking back in my journal I have had 19 bad days and 55 great days since January 2009. The rest I would refer to as average days. After my checkups with everyone I can report no change in my MRI. Neuro exam went very well except for some minor loss of feeling in my big toes (common in us MS'rs). Again it was very minor and I still have feeling there. The blood tests where all very positive, almost all my levels are up exactly or better than where they need to be. My Vitamin D went up from a 19.2 to a 66.5 over the year! With the new interval scale starting the 21st (10.0-75.0) I am right on target. My B12 is in good shape. The supplement plan is really helping me. The only flags that came up are my white blood count levels and my overall platelet levels. Both are down below the norm. I have added Intenzyme Forte, Amino Sport and Folic Acid to my supplement plan to aid my in my areas of concern.

I continue on my supplements regime and have made a few adjustment as of this month. I still have a bit of ON hanging on in my eye. It seemingly comes and goes. The fatigue and cognitive issues are better but they can still creep up and bight me if I am not smart. Some new things that have come up over the year are my legs, some aches, tiredness, asleep feeling and some pain. I am still sorting out my leg issues and have not 100% decided that my MS is the primary cause. The biggest thing by far I am dealing with right now is all mental.

All the exams where great, I am doing very well. No change in my MRI! Why the hell do I feel lost these days? I appear to have gotten myself into some type of mental rut. Each day I find plenty of things to do to keep my mind working and keep myself distracted. I have pushed off my MS. I rarely write in my journal, I no longer visit my forums, and most of all I no longer talk with the friends I have gained this past year. I am mentally lost it seems...stay busy.....ignore.....tomorrow......fog....

Time to break this cycle and get myself back on track. It starts with this update which is long past overdue.

To my wife Anne, my friends and all those I have spoken with this past year if I have neglected you, ignored you or disappeared on you, I apologize and I do better this coming year.

Things will change and it will start today!

Kayaking

2009-09-08T15:08:00.007-04:00

Thanks to my wife's birthday I have finally gotten out and kayaked after my move south to NC. It's only taken 5.5 years. We had a great time on the New River in VA. It reminds me that I need to do things and try not to get to protective of what I do.

Anniversary

2009-09-08T15:03:00.002-04:00

Well it was my 1 year anniversary with MS in August (My first sign of ON). It has been an interesting year to say the least. September brings on my annual visit to my neuro. MRI, blood tests the "N" tests. I am also going to meet with Dr. Qutab today to sort through my blood tests and overall wellness. I will have a complete report for everyone as soon as I have everything back from both doctor's.

Multiple Sclerosis International Federation

2009-08-08T09:34:00.001-04:00

Beautiful Day - English from MSIF on Vimeo.

PART XI

2009-07-15T11:22:00.004-04:00

Well it has been quite some time since I have posted. Has it really been two months? Wow, I guess have been busy with things more than I thought.

My MS is always there as I am sure it is with some of you. Everyday I wake up and analyze my body and mind to see where I am at for the day. I have a type of mental checklist to formulate what I feel I can and can't do for the day. I'm hoping not to become OVER cautious with what I do.

It's a real worry for me that I will shut myself down too much and do less out of fear (common I would think). I rely a lot on my wife for balance with this issue. Should I go out in the heat today, should I push through the tiredness I feel. Is that my MS or my normal body talking....? That pain or ache I have in my leg(s) is that from being out of shape, the walk I took or something else? I am sure anyone with MS could form a LONG list here, but you get the general idea.

Pushing yourself is a good thing but over doing or doing something stupid is another thing completely.

Anyway enough analyzation and on to what has been going on with me. First off I am coming up on the one year anniversary with MS in my life. It seems like light years since my blindness from optic neuritis, telling my wife I have MS, the hospital stay, telling my family, the doctors etc., etc. Eventually and with lots of help and eduction I did find my way.

To recap here is what I am doing right now. In addition to the Swank Diet I have cut out processed sugar and all dairy. Continuing on with my supplements and vitamins. The life blood of what I am doing. I now take everything twice a day (total of 51 pills, 6 sublinguals and 6 drops in water daily). Add in my Atlas Orthogonist, exercise (when I can), positive thinking and some meditation and there you have it.

I have to say I am in MUCH better condition then I was last August. I started my journal in January to keep a daily and weekly recap of everything going on with me and MS. It's interesting to review the 7 months and look at what has happened. I have had 21 "bad" days. These are days that I am in terrible shape for one reason or another (some MS, some not). I have had 61 "outstanding" days. These are days where I have felt exceptionally well. The rest of the days are all "average" days of feeling good and active. The "bad days are all weighted into the first 2 1/2 months. I have only had only 7 "bad" days since March 21st 2009. My program is working for me.

My eye is doing very well and only seems off when I am severely over tired. It appears this will be an ongoing issue for me. The fatigue I had originally has lessened since the introduction of the supplements. It's like night and day. I rarely need a daily nap as I did before. The rest of my body seems about the same except for one new issue.

On June 7th I started having some problems with my legs. The symptoms were soreness, aches and a sense of falling asleep in my feet. I gave it a week or so to see if it was just something physical from over doing or walking etc. The symptoms seem to come and go and increase from prolonged sitting in the same position. I went immediately to my chiro and got adjusted. Instant change and relief from my symptoms. My entire lower body felt tired and sore from relief for a couple of days. It appears at this point this is probably not MS related but I will be keeping a serious eye on it.

I learned of some new equipment when I was at my appointment with Dr. Meehan and thought I would pass it along. They now have the MRS2000 (Magnetic Resonance Stimulation) LINK 2, LINK 3). Here is a brief blurb about it.

Electromagnetic therapy applies magnetic fields–either static or pulsed. Low Pulsing Magnetic Fields (PEMF) are used instead because a constant magnetic field is unable to penetrate the whole body and also the body's cells soon become used to a constant magnetic field. The pulsating field can be optimized to the correct frequency of vibration to effects the whole system and its long term use has many benefits. With low pulsating electromagnetic fields the cells can not be damaged.

Today, magnetic therapy is well established worldwide. Japan has given official approval for the use of pulsed magnetic devices for healing. Over 1000 clinical studies world-wide document the effectiveness of Magnetic- Resonance- Stimulation. The German-made MRS 2000+ designo is the “next step” as well as the new benchmark in the field of pulsating magnetic therapy for home, medical or clinical use.

I am doing a bit of research on this and will most likely add this to my MS and overall health regime.

Well that's about it for now.
I hope everyone is doing well and enjoying life.
Dave

Sunshine Can Actually Decrease Your Vitamin D

2009-05-12T07:51:00.002-04:00

Very interesting video/information on vitamin D. Make sure you are taking the proper steps to maximize your time in the sun. Not to crazy about the idea of people not showering for two days but this is a very interesting video.

Get safe sun!

http://articles.mercola.com/sites/articles/archive/2009/05/12/Shocking-Update-Sunshine-Can-Actually-Decrease-Your-Vitamin-D-Levels.aspx

Short story, BIG reminder!

2009-04-17T08:36:00.001-04:00

I have been feeling so good lately I am starting to FORGET what got me here. Its seems all to easy to stop with the naps, the supplements/herbs, getting my sun, and the exercise once you start feeling like yourself again.

BIG REMINDER don't stop whats gotten you better. Good thing I have a great wife keeps tabs on me!

MS Walk in Saratoga N.Y.

2009-04-10T07:53:00.002-04:00

My family is participating in a MS walk in Saratoga NY. Please donate if you can. Click Here

Candida

2009-03-30T12:30:00.004-04:00

Well I am feeling great these days. The only thing tired or sore is my body and thats from trying to get back in shape after all this.

I wanted to pass along my thoughts on everyone that has MS and those that don't getting tested for Candida. It may sound all to familiar to some of us but it may have a link/tie in with people that have MS. If you have time read the book "Healing MS" by Ann Boroch and pay attention to chapter 2.

Some major contributing factors are use of antibiotics, steroids (cortisone, prednisone), birth control pills, estrogen replacement therapy, poor diet, chemotherapy, radiation, heavy metals, alcohol overuse, drugs, and stress.

"Immune weakness is probably the most obvious reason for the development of candidiasis. When the immune system is compromised the body is vulnerable to attack from a wide variety of pathogens – not just candida. Interestingly, candida can often start to flourish when a person uses antibiotics as antibiotics kill off the good bacteria that are instrumental in keeping candida production in check. When good bacteria is depleted the environment for candida to thrive is created."

Some of the most frequent Candida symptoms are:
abdominal gas, headaches, migraines, excessive fatigue, cravings for alcohol, anxiety, vaginitis, rectal itching, cravings for sweets, inability to think clearly or concentrate, hyperactivity, mood swings, diarrhea, constipation, hyperactivity, itching, acne, eczema, depression, sinus inflammation, pre-menstrual syndrome, dizziness, poor memory, persistent cough, earaches, low sex drive, muscle weakness, irritability, learning difficulties, sensitivity to fragrances and/or other chemicals, cognitive impairment, thrush, athletes foot, sore throat, indigestion, acid reflux, chronic pain

"Most people are unaware that it even exists, because most main stream doctors are uneducated about its impact on our health. People suffering from this condition often go from doctor to doctor for years and are usually told they are a hypochondriac or that it is stress or a psychiatric problem, before ever discovering the real culprit."

There are several options for testing if you ask your neuro or GP.

Stool Tests
Stool tests can be very valuable for detecting bacterial and other infections of the gastrointestinal tract. They are not however reliable for detecting Candida. See the bottom of the page for Candida tests.

Hormone Panel
Multiple labs offer this.

Blood test:
Candida albicans Assay for Candida albicans and the Immuno 1 BloodprintTM for Delayed Food Allergies.

Two saliva self test at home.(additional link http://www.candida-albicans-cure.com/candida-test.html)

1.
A Simple Test You Can Do at Home
First thing in the morning, before you put ANYTHING in your mouth, get a clear glass and fill with water. Work up a bit of saliva, then spit it into the glass of water. Check the water after a moment or within 2-3 minutes, then within every 15 minutes.

If you have a candida yeast infection, you will see strings, like cloudy legs, traveling down into the water from the saliva floating on the top, or "cloudy" saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water. If there are no strings, the water is as clear as it was before you spit in the glass and the saliva is still floating after at least one hour, you are probably candida yeast free. The more strings and cloudiness there is and the faster it develops, the greater the overgrowth.

2.
First thing in the morning, before you put ANYTHING in your mouth, get a clear glass and fill with water. Work up a bit of saliva, then spit it into the glass of water. Check the water after a moment or within 2-3 minutes, then within every 15 minutes.

If you have a candida yeast infection, you will see strings, like cloudy legs, traveling down into the water from the saliva floating on the top, or "cloudy" saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water. If there are no strings, the water is as clear as it was before you spit in the glass and the saliva is still floating after at least one hour, you are probably candida yeast free. The more strings and cloudiness there is and the faster it develops, the greater the overgrowth.

Part X.....a rebirth?

2009-03-12T09:00:00.002-04:00

Well it has now been 60 days on the supplements. I have to tell you I feel reborn to some extent. My fatigue and overall feelings are almost back to what I remember as normal. My head is clear, most of the "cognitive" things I had going on have dwindled away. The only catch is when I miss sleep, stay up late or wear myself out physically. Sad to say at this point the physically part is way to easy to do but I will get there soon enough.

I have been keeping up on my journal for the most part throughout my 60 days. There were a few days in February that I missed as I was really sick. I decided to start color coding my days as well as writing a recap each day. Red for bad, orange for great days and nothing for the days I will call "symptomatic" . Meaning there is something there but it is minor. So here is the recap. 2 bad days, 20 great days, 20 symptomatic days. 9 of the last 11 have been great days! As you can see that does not equal 60. The missing days are the days I was down with the "bug", 18 in total. The great news on the bug is it did not cause any flair ups with my MS. During that time I stayed away from any immune based remedies. I just went through it sticking with the diet, my supps program. and sleep. How my wife can deal with me is beyond a mystery, I would be lost without her.

Now to the rebirth of sorts that I am feeling. My body is the part that has become the next step. It appears I have everything going where I want it and my lazy, confined body now needs to catch up. WELCOME back warm weather. Getting out, exercising, doing yard work, horseback riding and even walking long distances can now be a bit frustrating. I have been so locked in (literally and figuratively) with the winter and starting my road back I am not sure what my body being out of shape vs and MS symptom feels like anymore. Are the aches, soreness and being tired from exercise or not? It's a simple answer to solve. Get out and do it and see where it leads. I never thought stacking wood could feel so good. Being OUTSIDE and getting myself going is the next step and I can't wait to see where it goes.

An Open Letter To Those Without MS

2009-03-04T09:18:00.002-05:00

I came across this letter today. While everything does not apply to me personally. This letter is a great summation of the thoughts that run around in a person with MS's head. I could not have come up with something better.

An Open Letter To Those Without MS

Having MS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

___________________________________

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day sitting on my arse, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about stuff and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

___________________________________

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

___________________________________

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

___________________________________

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what this kind of illness does to you.

___________________________________

Please understand that MS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

___________________________________

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. MS may cause secondary depression (wouldn't you get depressed if you were stuck inside for ages on end!?) but it is not created by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - don't you think that if I could possibly do it that I would?

___________________________________

Please understand that if I say I have to sit down/pee/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). MS does not forgive.

___________________________________

If you want to suggest a cure to me, DON'T. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with MS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would KNOW.
___________________________________

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously.
___________________________________

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out, I need you to shop for me, I need you to cook and clean for me, I need you to take me the the doctors, sometimes I need you to support me so I can walk to the bathroom without falling over.

I need you on a different level too ... you're my link to the outside world, if you don't set up my recliner in the lounge-room I can't watch TV and if you don't bring home a newspaper I can't read it. If you don't come to visit me then I won't get to see you.

... and, as much as it's possible, I need you to understand me.

___________________________________

Adapted by S Hamilton 2004 - taken from an article by Ricky Buchanan. When forwarding or publishing elsewhere please use the URL of Ricky Buchanan's original version - http://notdoneliving.net/foothold/openletter/

Permission to reproduce here kindly given by Ricky Buchanan, who has also included Sue's version on Ricky's site here:http://notdoneliving.net/foothold/openletter/options.html

MS Awareness Week March 2-8, 2009!

2009-03-03T09:35:00.003-05:00

Please do something to help in the awareness week! Next year I will have an event or something for everyone to take part in but please don't let this year go buy. Get involved someplace and "Move It".

Some of the headlines out there this week!
A Week for Millions of People Impacted By MS to Move It and Come Together In Support of the MS Movement

MS Activists are Moving It to Improve Health Care for People with MS

Corporate partners Moving It to End MS

This is a watershed year in MS research with more than a dozen new therapies moving through the MS pipeline including the first two oral disease modifying drugs and the first symptom management drug that improves walking;

Exciting new research is also underway into Vitamin D and MS which is revealing an ever stronger tie between susceptibility to MS and reduced levels of Vitamin D;
Recent discoveries of new genes that make people susceptible to MS are providing clues to stopping and preventing the disease
The six Pediatric MS Centers established across the country offer the potential for finding the cause of MS by studying children with the disease, who could still harbor clues to what caused their MS because the environmental triggers may still be present.

What MS Type do I have?

2009-02-22T09:46:00.002-05:00

I had a couple discussions come up recently about what type of MS I had and what others had. In doing some research I came across this great breakdown and thought I would post it.

1. Relapsing/Remitting Multiple Sclerosis (RRmultiple sclerosis):
This is characterised by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Around twice as many women as men present with this variety.

2. Secondary Progressive Multiple Sclerosis (SPmultiple sclerosis):
In this form of multiple sclerosis a person who initially had relapsing-remitting multiple sclerosis begins to develop a gradual deterioration in nerve function, with or without relapses. After a number of years many people who have had relapsing/remitting multiple sclerosis will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery. After 10 years, 50% of people with relapsing/remitting multiple sclerosis will have developed secondary progressive. By 25 to 30 years, that figure will have risen to 90%.

3. Progressive Relapsing Multiple Sclerosis (PRmultiple sclerosis):
Progressive relapsing multiple sclerosis shows clear progression in the level of disability from the time symptoms first begin, but with episodes of clear relapses that may or may not be associated with some recovery following the acute episode. This form of multiple sclerosis follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.

4. Primary Progressive Multiple Sclerosis (PPmultiple sclerosis):
This type of multiple sclerosis is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPmultiple sclerosis differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive multiple sclerosis often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.

Other terms often used to describe forms of multiple sclerosis are:
Benign multiple sclerosis: This is a sub-group of relapsing/remitting. It is used to describe the disease in people who have had multiple sclerosis for fifteen or more years without picking up any serious and enduring disability. One of the neurologists that I saw put it at ten years. It's a bit of a false label really and people with benign multiple sclerosis are often reclassified as Secondary Progressive after a number of years [Hawkins and McDonnell, 1999].
Malignant multiple sclerosis: Also known as Marburg's Variant and Acute Multiple Sclerosis. This is a label given to forms of multiple sclerosis where the disease progresses very rapidly from onset leading to severe disability within a relatively short period of time. Fortunately, this form of multiple sclerosis is extremely rare.

Chronic Progressive multiple sclerosis: Primary Progressive and Secondary Progressive used to be lumped together as Chronic Progressive (CPmultiple sclerosis) but this term is no longer officially recognised although you will still see it referred to now and then.

Transitional/Progressive multiple sclerosis: Another form of the disease which is sometimes referred to but not widely used, is Transitional/Progressive (TPmultiple sclerosis). This is characterised by a progressive course beginning many years after an isolated bout.

Devic's Disease: Also known as Neuromyelitis Optica, Devic's disease is a related condition to multiple sclerosis that is characterised by an attack of Optic Neuritis in both eyes followed by severe inflammation of the spinal cord (Transverse Myelopathy).

Balo's concentric sclerosis: This is another very rare disease that resembles multiple sclerosis. Clinically, it is very hard to distinguish Balo's concentric sclerosis from multiple sclerosis but MRI scans show the lesions in Balo's to be concentric rings of intact myelin and demyelinated zones. It is more common in China and the Philippines than elsewhere.

Sick of being Sick

2009-02-17T09:28:00.002-05:00

Well once again I have been away for a bit. I have been very sick with some type of bug. It has been quite a long haul through this sickness and I am still not myself. My eye that I had ON in is now starting to bother me a bit. Tired and sore. My vision has not really been effected, so that's a REAL positive. Getting sick on top of my MS has now become a long fight with the fear of my MS.

People without MS may not may not understand that infections are compounded by an autoimmune disease. When we get sick with a “real” foreign threat the risk of our MS symptoms worsening or our immune systems causing and MS relapse increases. Our bodies become very vulnerable to an attack from the immune system itself.
Being that I am not taking any of the immunosuppressive medications I do escape the side effects that can make you feel even worse. I really feel for those that have to handle that as well.

I continue to stay positive and battle my way back. Hopefully things this week or next will be back to what I now call normal. I have kept up with my journal and will be giving you an update very soon on my progress with my supplement regimen.

For those interested I started a Facebook group titled the Natural approaches to Multiple Sclerosis. The title basically sums up what it is about.

PART IX, FEELING BETTER!

2009-01-19T11:41:00.004-05:00

I have been away from the blog for a bit and I apologize for not updating it sooner. A lot going on with the holidays, tests and the new program Dr. Qutab has put me on. It has been an interesting few weeks. Below I will break down what I am doing and how it's been, but I need to give you an update and a caution on B12.

As most of my readers know I was taking 8000 B12 a day and at my last blood test I was up to 800. My B12 was obviously extremely low originally. Here is the BIG REMINDER to everyone. MAKE SURE you TEST your levels often to keep up on EVERYTHING. My latest blood test for B12 was 1837! To say we were all shocked was an understatement. I have since stopped taking it and will default back to 2000 a week and see where my levels settle at. I will say this again, PLEASE - especially if you are doing things yourself - TEST your blood and see where your levels are before you do anything.

After all the tests, blood vials, pokes and prods, here is where I am at and what I am doing. My last blood tests showed the following:
DHEA at the low end acceptable
Candida at the low end acceptable
Serum carnitine at the low end acceptable
Vitamin D at the low end of acceptable
Vitamin B12 good at 800 (tested since WAY high at 1837)

What I am taking (yep it's alot):
Acetyl L Carnitine 6 capsules/day, B12 2000 1 tablet sublingual/week, Beta Plus 2 tablets per day (no gallbladder), Bio D Mulsion 6 drops/day, Bioctasol Forte 9 tablets/day, Bio Multi Plus 3 tablets/day, L Carnitine 4 capsules/day, My B Tabs 6 tablets sublingual/day, Nuclezyme Forte 9 capsules/day, Optimal EFA 6 capsules/day, Padma Basic 4 tablets/day, Phosphatidylserine 9 capsules/day, Zyrtec (allergies) 1 tablet/day There is a breakdown in previous posts of what each is and intended to help with.

After 14 days on my new system I have had a few days I have woken up and felt, dare I say, like my old self. I have been keeping a journal on everything from the first day. I have had 5 spectacular days (possibly 6 with today!) and one really bad day. The bad day I believe occurred because I was out in the cold for too long and it got me. The cold seems to seriously knock the crap out of me. I am eager to see where I am after 30 days. Things are seriously improving on the fatigue side for the most part. I am sure I will still have some days but there is no question I am getting better overall and that's all I can ask for.

Part VIII

2008-12-29T13:57:00.005-05:00

Quick update here on my approach for the next month. I have met again with my nutritionist after my last blood tests (basic fatigue tests as I mentioned). In reviewing everything I am going to be taking the following in the amounts appropriate for my age and body weight. I am going on a heavy dose of D for a month and then will be backing off. My levels are VERY low. My hope is to follow the swank diet, exercise, meditate and add these supplements. After my MRI in four months I will reevaluate everything with my doctors.

Hoping to see some help with my fatigue battles. I am real tired of be tired.

I have include a generic breakdown of what each is and the basic intent.

Bio-D Mulsion Forte
Supplies vitamin D3 in an emulsified form to aid in uptake and assimilation, especially important for those with malabsorption issues.
Inadequate levels of vitamin D are common. While the importance of vitamin D for musculoskeletal health is well documented, its importance in numerous other aspects of health are now recognized. They include (but are not limited to) cardiovascular health and immune function.

Bioctasol Forte
Intended to increase energy. Nutritional support for oxygen utilization by muscle and nerve tissue. Supplies octacosanol (from rice) with antioxidant enzymes SOD and catalase.

Nuclezyme-Forte
Supplemental source of RNA and DNA with synergistic vitamins and mineral components.

Optimal EFAs
To replace Evening Primrose and Eskimo oils. Supplies a unique blend of the highest quality fish, flaxseed and borage oils, providing a balanced blend of omega-3, 6, and 9 essential fatty acids in optimal ratios.

My B-Tabs
This uniquely formulated combination of vitamins supports many metabolic functions including energy production, enzyme synthesis, and antioxidant activity. Research shows that Adenosine Monophosphate (AMP)is a precursor or building block for ATP. AMP is converted to ATP by the enzyme ATPase. AMP is fundamental in phosphorylation reaction and constitutes a vital metabolic link in energy, transfer mechanism, muscular contractions, enzyme reactions, carbohydrate and fat metabolism. Adenosine is a naturally occurring cellular metabolite. It is one of the four purine nucleotides responsible for protein synthesis. Also shown to help in areas such as obesity, chronic fatigue syndrome, immune system, nervous system, fatigue, stress, sleep patterns, herpes simplex, shingles, epstein barr virus, multiple sclerosis, pain, bursitis, tendinitis, tenosynovitis, chronic thrombophlebitis, varicose vein complications.

L-Carnitine HCI
Supplemental source of L-Carnitine, an amino acid like compound. L-Carnitine plays a critical role in fat metabolism and energy production, and therefore supports healthy heart function. L-Carnitine is derived from meat sources in the diet, and is therefore often found lacking in those on vegetarian type diets.

Phosphatidylserine
Supplemental source of this important phospholipid which is a structural part of biologic membranes. Phosphatidylserine is involved in signal transduction activity, and may positively impact cognition.

Acetyl-L-Carnitine
Found throughout the central nervous system (CNS), Acetyl-L-Carnitine plays a key role in CNS metabolism, offering a source of acetyl groups for the synthesis of acetylcholine, an important neurotransmitter, and thereby supporting healthy brain function.

Padma 28
Comes from a traditional Tibetian herbal formula that has been used for centuries to support lifelong health. This natural formula is based on the Tibetan doctrine of maintaining a healthy equilibrium in your body. Padma was formulated to gently restore a healthy balance to revitalize your body.

Use of vitamin D in clinical practice

2008-12-27T07:52:00.003-05:00

In those with serious illnesses associated with vitamin D deficiency, such as cancer, heart disease, multiple sclerosis, diabetes, autism, and a host of other illnesses, doses should be sufficient to maintain year-round 25(OH)D levels between 55-70 ng/ mL. Vitamin D-deficient patients with serious illness should not only be supplemented more aggressively than the well, they should have more frequent monitoring of serum 25(OH) D and serum calcium.

Claims that vitamin D may help prevent such a wide variety of diseases seem incredible until one realizes vitamin D is not a vitamin; rather, it is the only known substrate for a potent, pleiotropic, repair and maintenance, seco-steroid hormone with a single endocrine function, but multiple autocrine functions.

Full article:
http://findarticles.com/p/articles/mi_m0FDN/is_1_13/ai_n25332537/pg_1?tag=artBody;col1

Mayo Clinic December Updates

2008-12-20T07:57:00.004-05:00

Treatments and drugs
There is no cure for multiple sclerosis. Treatment typically focuses on combating the autoimmune response and managing the symptoms. Some people have such mild symptoms that no treatment is necessary.

Medications
Drugs that are commonly used for multiple sclerosis include:

Corticosteroids. The most common treatment for multiple sclerosis.
Interferons. These types of drugs — such as Betaseron, Avonex and Rebif — appear to slow the rate at which multiple sclerosis symptoms. But interferons can cause serious liver damage.
Glatiramer (Copaxone). Doctors believe that glatiramer works by blocking your immune system's attack on myelin. This drug can cause serious side effects, so it's typically reserved for people who see no results from other types of treatments.
Therapies
A physical or occupational therapist can teach you stretching and strengthening exercises, and show you how to use devices that can make it easier to perform daily tasks.

Procedures
Plasma exchange (plasmapheresis) looks a little like dialysis as it mechanically separates your blood cells from your plasma, the liquid part of your blood. Plasma exchange is sometimes used to help combat severe symptoms of multiple sclerosis relapses, especially in people who are not responding to intravenous steroids.

Lifestyle and home remedies
These steps may help relieve some symptoms of multiple sclerosis:

Get enough rest. Fatigue is a common symptom of multiple sclerosis, and getting your rest may make you feel less tired.
Exercise. Regular aerobic exercise may offer some benefits if you have mild to moderate MS. Benefits include improved strength, muscle tone, balance and coordination, and help with depression. Swimming is a good option for people with MS who are bothered by heat.

Be careful with heat. Extreme heat may cause extreme muscle weakness. Although some people with multiple sclerosis aren't bothered by heat and may enjoy warm baths and showers, be very careful before exposing yourself to extreme heat until you know how you'll react. Don't get into a hot tub or sauna unless there's someone nearby who can pull you out if necessary. If you do experience heat-related worsening of signs or symptoms, cooling down for a few hours usually will return you to your normal state.

Cool down. Many people with multiple sclerosis experience heat-related worsening of MS symptoms. If you live in a hot and humid area, consider having air conditioning in your home. Tepid or cool baths also may provide some relief.

Eat a well-balanced diet. Eating a healthy, well-balanced diet can help keep your immune system strong.

MS cure at Dalhousie University?

2008-12-19T08:57:00.003-05:00

Not so fast my friend.

There is a few rumors floating around the MS forums that an apparent news reports stated researchers from Dalhousie university are close to a cure for MS. After doing some research and making a few phone calls this news was misinterpreted. Below is a recap of what I learned with the help of my wife.

Trudy Campbell, nurse practitioner with the MS Research Department at Dalhousie University, tells us the news spot referred to the End MS Campaign by the MS Society of Canada. They encourage donations which allow research to continue towards a cure for MS, but there is not a cure forthcoming in the very near future. She remains hopeful that within a few years they will find a cure, just not yet.
http://www.endms.ca/english/donate-now.aspx

Some news from MRF

2008-12-15T09:25:00.000-05:00

I just got his via email and thought I would post it on. The email was mostly recruiting donations but it did have some news.

The MRF is supported by charitable donations from foundations, corporations and people like you. If you have already made a donation, the MRF is most grateful for your support. If not, we would appreciate a gift of any amount to help us maintain our aggressive research effort. I believe the MRF will achieve its goal to license for commercial development a myelin repair therapeutic target by July 2009. Your support and the support of your friends and family members will help to ensure our ability to do so, and to continue identifying new drug targets until a better treatment for people with MS is a reality.

http://www.myelinrepair.org/

Part VII

2008-12-08T11:13:00.005-05:00

Well it’s been a long time since my last update and not a lot has changed. The diet appears to be helping me and it is going very well. I had a great Thanksgiving Swank dinner! On the flip side I am struggling a bit with fatigue as well as the cold weather. It appears I am sensitive to the cold much like the heat. Makes it tough to stay motivated and get out there. It’s really hard to balance how you feel, how things really effect you, and what may or may not be over analyzation. Thankfully, I have a great wife to lean on. Anne helps me a lot along the way and keeps me focused.

I had a phone conference with Dr. Qutab after my last test and my meeting with Dr. Greene. He reccomended some new blood tests. Once these are done we may adjust my diet and take natural approaches to my fatigue issues. Any further nutritional changes for my treatment plans will come after this blood test and my next meetings.
The new blood tests were as follows:
DHEA
Candida
Serum carnitine
Vitamin D
Vitamin B12 (follow up to see what the B12 I am taking is doing)

Some treatment options he mentioned that I am not currently doing are the following:

1. DHEA treatment
MS patients have been noted to have low DHEA levels. With treatment some have seen discernible improvement, in their quality of life, increased energy, better dexterity, greater limb strength, decreased numbness.

2. Anti-candida (anti-fungal) treatment with Nystatin or herbal alternative

3. L-carnitine
Deficiency of carnitine may contribute to fatigue by reducing energy production through fatty acid oxidation.

4. Histamine therapy
Being researched by Dr. Jonathan Wright. They are uncontrolled studies but are proving effective.

5. AMP (adenosine monophosphate) IM injections, 20-100 mg, 3 times per week for 6 months to 1 year
Alternately, it can be given sublingually, although the research is being done with injections.

6. Chinese herbal formulas

After my meeting with Qutab, it was back to Dr Greene to discuss everything and formulate what the neurological approach is going to be. I again passed all neurological testing and my eye is probably about 90%-95%. Dr. Greene agreed with the blood tests and I have had them (still waiting on results). I took her advice and did get a flu shot. After we went through all the meds and what Dr. Greene reccomends, I have decided the following: No medications at this time, MRI scheduled 6 months out (progress check), call in with ANY new symptoms or any questions. I will exercise, follow the diet, decrease any stress and take the natural approach for 6 months. At 6 months we will have the MRI and see where things are.

Another update soon.

PART VI

2008-11-24T14:34:00.001-05:00

I spoke with Dr. Greene about my secondary tests. It's all clean except for one lesion on my spine and the B12 questions I have. We had a really great conversation (she gave me her personal cell, who does that?) about the meds, alternative treatments, my other doctors, and she is open to all options for treatment. I have to say it's unbelievable how I have fallen in with the doctors I have. I consider myself very lucky. We are going to meet on the 28th to discuss the meds in depth and review what I plan to do moving ahead. In the meantime she will forward everything to my two other doctors and get them all talking next week.

I have decided not to take any meds and see how things go for 6 months to a year. I plan to go with the swank diet, meditation (helped me alot), and exercise. The diet itself has not been hard to adapt to. The only problem is making sure I get my 20 unsaturated. Moving ahead I plan to continue to educate myself on MS as much as I can and keep my mind open to any new natural treatments I may come across. It will be interesting to see if Dr. Qutab has any dietary adjustments based on my blood tests and history.

Once everything is solidified I will give you another update.

My follow up test results are as follows.
No Lyme
No Lupus
No Thyroid
No Syphillis
No Celiac antibodies (in the family and can have an effect with meds)
No inflammation markers
B12 is good at 800 ( I am taking 8000 a day so I have some questions here)

MRI
1 small plaque (lesion) on the spine at C2-3, off left of midline

PART V

2008-11-23T07:49:00.001-05:00

continued...

MRI results are what she referred to as classic. Classic cannot mean anything positive for me. The breakdown is 8 total lesions with one active (eye), the largest of which is 7mm. 3 of the lesions I have form the "classic" Dawson's Fingers. As you can imagine this all leads to MS being the 95% or better diagnosis. From all my research last night I don't find anything other than MS that creates the Dawson's Fingers (please correct me if I am wrong). I am in her mild classification of MS.

In her opinion with everything lined up, I have MS. We talked a bit more and went over the additional testing that is normally done. The spinal MRI, additional blood tests (Lyme, Lupus, etc.), and the lumbar puncture. At this point she tells me I don't have to have any of them if I don't want to as she that confident I have MS. All the time willing to do any tests I would want. After reading about Dawson's Fingers and reviewing everything I actually agree, not that I want it but it seems to all add up. I decided to go ahead with the spinal MRI and all the blood tests and skip the puncture at this point.

We then discussed all the medications (she wants me on something soon) and all the baggage that comes with them. I have done a lot of reading on the meds and I have to say I am not really comfortable with them and I am hoping I don't have to take any of them.

Big breath...here comes nutrition and Dr. Qutab. Here I learned a few things, Greene has had some alternative medicine training with Andrew Wiel and she agrees that a healthy diet is "better for the overall health" of the patient. While I don't think she is a Swank supporter as treatment, she seems willing to incorporate nutrition and Dr. Qutab into the picture and is willing to speak with him as well.

So to wrap up another long story (hope some of you like to read) I think I have the 3 doctors I am going to use to get me through what ever lies ahead of me and my family. My plan is to have my blood test today and MRI next week. After I have all the tests back I am going to forward them to everyone and ask them to contact each other to review the results. Then I will have to decide how I proceed with everything. Hopefully my mind stops spinning soon and I find my path.

next Qtab,more tests, and B12

PARY IV

2008-11-22T09:09:00.002-05:00

Wednesday the 24th I woke up eager to get to my appointment today with Greene-Chandos at Forsythe Neurology and took the 1:15 minute drive in stride with the help of my wife and family. Once at the office (20min early) I signed in to get the paperwork and get things rolling only to find......the doctor is not in the office. An emergency the day before cancelled all her appointments on Wednesday. When does a guy catch a break with all this? Why wasn't I called you ask, because they never got ANY records forwarded to them and "apparently" my wife never left a number or any contact information. Being that she spoke with them the day I started my Solu-Medrol, from the hospital I guess that's possible but highly unlikely. After some discussion, since I was there I did all the paperwork, copied my records, gave them my MRI CD and then I got lucky, they had a cancellation for the next day at 11am while I was standing there.

Thursday the 25th
Back at the doctors, weigh in, blood pressure etc. More waiting after that in the examination room where all the nerves, emotions creep back in. I passed the time checking my bad eye on the eye exam chart. Back to 20/15, line 9 at 15 feet. Waiting is the WORST part of all of this. Finally the doctor comes in and we go through all my history, then the family illnesses etc, etc. Now one of the big ones for me to discuss was the Atlas Orthogonist. 10 years ago I had 3 fingers (pinky in) on my right hand go numb, it then spread to my other hand to the same place. Long story short after a brief medical doctor tour my mother suggested seeing an Atlas Orthogonist (less than 200 in the US). After my first adjustment it took 2 weeks for numbness to dissipate. I have been going since then 3 to 4 times a year. If my hands act up in between I go and I have instant (seconds) relief of any problems. Greene says this issue sounds like a cervical issue and to keep going. I will have Dr. Meehan (Atlas doc) conference with her and she is open to working with others. Great news for me. Next up the neurological tests which I passed with flying colors. Minor eye exam was next and she was very surprised at how fast things had come back so far. Good news up to this point everything is great (I was really liking the doctor and how she was handling everything so far). She then excused herself to go read my MRI. Here we go...more waiting.

PART III

2008-11-21T08:01:00.002-05:00

Slowly at first my eye seemed to get better. On the 4th day out of the hospital it may a huge leap. As of Sept 23rd, day 10 my vision is totally clear of the film type issue and I have very little double vision. All the doctors have told me with this fast of recovery I can expect to be back to 100% eventually. No time period given of course, up to a year but looking more like a couple weeks after treatment.

My next step was to see neurologists. I was lucky enough to get in qiuckly to 2 of the top MS specialists in my area. The first was Dr. Jeffery the MS specialist at Wake Forest Baptist on September 22nd. I was really looking forward to getting things to the neurologist and making a plan for the days ahead. Using diet, exercise, and if need be down the road medication. Well to keep this part short the meeting went like this. 10 minutes long, the diagnosis came off the orignal test WITHOUT actually viewing the MRI, no ruling out Lyme, no further tests, diet has nothing to do with MS you could eat McDonalds for the rest of your life, no more atlas orthogonist adjustments, no exercise mentioned or aparrently needed. Take Betaseron every other day and don't concern yourself or do anything else and you will be just like you are now when you are 90. See you in 4-6 weeks, not what I or probably anyone wants to hear. I felt like I was on a conveyer-belt with a number stuck on my head.

Overall, even with all the doctor woes, I was pretty upbeat and had no doom and gloom thoughts. Swanking away and had my next neurologist appointment the next day with Dr. Greene-Chandos at Forsythe Neurology in Winston Salem NC. I trust things will go better this trip.

Info links for those interested:
Dr Qutab: http://www.spadocs.com/
Atlas: http://www.atlasorthogonality.com/

next I find my neuro...

PART II

2008-11-20T08:00:00.001-05:00

...
Next up was a consultation with my family doctor who basically agreed I needed to have the test and to move ahead as fast as I can. The test were all on September 2nd. Blood test showed everything in good health, Ultrasound all good, MRI...well, not quite as good. Several lesions (no exact number was given to me) were found ranging in size and location. Then the eye, optic neuritis.

As soon as my results were given and everything read I was immediately requested by all to have a 3 day treatment of Solu-Medrol at the local hospital (10th-13th). Not one doctor told me what to expect of the drug or the side affects. The hospital visit was long, long and long. IV every 12 hours, 6 treatments in total. The worse part of the entire process started the day I left. The side effects and what I will call withdrawal of the drug. The next 7 days I was a sick as a dog, I couldn't sleep, dizzy, hot, IRRITABLE, sore, shooting pains in my joints etc. It seemed all the side effects you can get, I had.

On September 16th I talked with Dr. Abbas Qutab of Élan Vítal Medical Center and Spa. I have used Dr. Qutab for dieting and nutritional needs for years prior to this and I would recommend him to anyone for anything if you like to look at the alternative side of medicine too. Qutab wants to wait on a strict diet until he gets some additional blood tests and the neurology reports but I need to go on the swank today. Main note was to follow up on the need to rule out lime disease, why haven't they?

I ordered the MS Diet book and got on the diet the day I received it.

next my recovery and the introduction of Neurology Specialists.

The Beginning!

2008-11-19T13:14:00.001-05:00

Here is the beginning of my story. My blog will be updated not only with my story but resources and news to help everyone and anyone involved with MS.

I have always been active and in good health until August 30th 2008. I awoke that day to blurry left eye. It seemed liked I may have scratched it or had a film over a section of my eye. After a few days of flushing my eye out and trying to make myself more comfortable I decided it best to go to an opthamologist.

After the normal series of eye tests I was eager and leery to hear what was wrong with my eye. During the entire test the doctor said nothing. Upon completion he sat and wrote out his notes for what seemed like forever never saying a word. After I prodded him for some type of information this is what he said. "I can find nothing wrong structurally with your eye you have MS". Needless to say any type of "bedside manner" was out the window. Obviously I was extremely shocked, horrified, scared and all that comes with a statement like that from a practicing professional. After I gathered myself it was off to make arrangements for an MRI (make sure you have it done WITH contrast dye), Ultrasound (carotid artery) and blood tests.

After that one of my best friends needed to be told of the news (he drove me to my appointment). Once I was done talking with him the really hard emotional call went to my wife. How the hell can a doctor tell a patient he had MS WITHOUT ANY TEST? I was full of emotions..... Lucky for me I have a spectacular wife and she has helped me through the rest of this story day by day.

next up...the doctors, medications, and ...diet?