Monday, December 29, 2008

Part VIII

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.

Saturday, December 27, 2008

Use of vitamin D in clinical practice

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

Saturday, December 20, 2008

Mayo Clinic December Updates

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.

Friday, December 19, 2008

MS cure at Dalhousie University?

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

Monday, December 15, 2008

Some news from MRF

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/

Monday, December 8, 2008

Part VII

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.

Monday, November 24, 2008

PART VI

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

Sunday, November 23, 2008

PART V

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

Saturday, November 22, 2008

PARY IV

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.

Friday, November 21, 2008

PART III

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...

Thursday, November 20, 2008

PART II

...
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.

Wednesday, November 19, 2008

The Beginning!

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?