Tuesday, December 8, 2009


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.

Monday, November 30, 2009

The Liberation Treatment: A whole new approach to MS

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.


Wednesday, November 25, 2009

Happy Thanksgiving

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.

Tuesday, November 10, 2009

Swank MS Foundation Fund Raiser!

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.

Saturday, September 19, 2009


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!

Tuesday, September 8, 2009


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.


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.

Wednesday, July 15, 2009


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.

Tuesday, May 12, 2009

Sunshine Can Actually Decrease Your Vitamin D

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!


Friday, April 17, 2009

Short story, BIG reminder!

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!

Friday, April 10, 2009

MS Walk in Saratoga N.Y.

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

Monday, March 30, 2009


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)

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.

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.

Thursday, March 12, 2009

Part X.....a rebirth?

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.

Wednesday, March 4, 2009

An Open Letter To Those Without MS

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

Tuesday, March 3, 2009

MS Awareness Week March 2-8, 2009!

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.

Sunday, February 22, 2009

What MS Type do I have?

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.

Tuesday, February 17, 2009

Sick of being Sick

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.

Monday, January 19, 2009


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.