I have MS and manage well. This is a sharing of some experiences, opinions, and recommendations. Here is some advice that's helped, some theories that make sense, and some useful links in a sea of confusion and despair.
DownPage Links: Flutterby Theme. A few years back, Bob Bell, an old scouter and mentor of mine, gave me a further lesson by retrieving the meaning of his life after disabling heart troubles. By perseverance and following his inner heart he strengthened his outer heart and stayed with us many more years. When told to take it easy he walked a many miles a day! One day Bob noticed a nice butterfly pin my daughter was wearing and remarked on the beautiful "flutterby". It was one of those time-stands-still insights. Bob's name was much more suitable - do not these creatures "flutter by"? The flutterby is also a favourite symbol of regeneration and resurrection. So how much better a theme for our encounter with MS than a flutterby? What better symbol of hope?
Quotes are in Green Text.

We are not alone - except in our choices.

MS is a nasty disease that brings despair because it is without cure, because it is without known cause, and because it is an unpredictable rogue disease. But through the web, a community of hope and help exists. It's people sharing their stories. People in all walks and from all places offer insights into health. The emphasis is on coping. People encouraging people ... both the afflicted and their helpers. One finds both wise and foolish opinions, most of which are offered with enthusiasm and conviction. There is much silliness to be found. Some of the ignorance out there borders on the criminal - many cons offer miracle helps. Of course it is so - we are a free society, and the internet is simply an extension of ourselves. But rising to the top is much that is good and true and that is what I've tried to collate and present some of.

"Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world." Linus Pauling

The information available on the web is extensive. The teaching and research medical colleges are on line with their material, often in the latest multi-media formats. Those who make their living by offering help are on line. There are clinics from mainline through alternative and some beyond the reach of law. As is often the case in these days, a person with an affliction may come to know more of that one thing than the doctors who must know many things. There are as many opinions as people. It was ever thus.

It is a remarkable time of progress in understanding and treatment. There are many new avenues of help. For most, there is management of their circumstances and reduced rate of decline. For some, there is such improvement that they walk again, they work again, they hope again. And for very few, there seem legitimate healings taking place.

However it is all in our own hands, a consequence of our own attitude, a measure of our own hope. There is no consensus among the medical profession nor even among the MS societies around the world. One must oneself, decide step by step what works, what is suitable, what is worth trying. MS is a slow disease. So also is the understanding of it slow. So also is the learning of what might be helpful slow. So also are the experimentation and the change of life style issues, slow.

Here are links to the best help I've found. It is a mixture of mainstream and alternative sources.

The main medical community regrettably have little to offer. The disease has no cure, and so they have no opinions. There are drugs now available. There are 3 such families - the ABC's. The Antiferons work with the immune system. The Beta xxx, Copaxone is a clever decoy for the myelin attacking cells. They are expensive (up to $20,000 a year), have varying degrees of side effects, and seem to be effective in about 1/3 of the tested populations. They do not give any outward appearance of lessening symptoms, but to various degrees appear to slow the rate of progression of the sclerosis as observed by periodic MRI's. The alternative medical community has much to offer. Their principle characteristic is the hope they offer. They encourage a postive attitude. Most are also characterized by promoting health. If one can live as positively and as healthy a life as one can, the body will help itself to remarkable lengths.

MS seems to either cause people to despair or to re-focus their lives. The first decline into depression and increasing immobility. The second live as best they might, full well understanding the serious nature of the disease. The latter may be said to seek "healing" when "curing" is not an option. It is a distinction worth exploring.

The Main Thing - The Best Bet Diet:

MS-DIRECT.ORG This is the site of Ashton Embry who has compiled a large database of medical papers on the subject of diet and ms. He has authored 3 excellent documents summarizing this perspective, that are downloadable on his site. Click the logo left.

"For many years it has been suspected that nutritional factors play a major role in MS with saturated fats and "allergic" foods being the prime suspects. Unfortunately little research has been done to follow up such hypotheses and currently the best we can say is that we do not know if nutritional factors are involved in MS or not. To help answer this question, an extensive literature research effort has been carried out to determine if the concept of nutritional factors being a part of MS cause is reasonable or not. The essays and links on this site provide the results of this research effort which has clearly determined that indeed nutritional factors very well may play a significant part in MS onset and progression. Most importantly, it appears that diet revision may be a very effective therapy for slowing or halting MS progression."

This is the website of the Best-Bet Diet Support Group - adopting a phrase from Ashton Embry, when he proposed diet as the "best-bet" theory of causation for MS.
"It is our belief that the hypothesis presented by Ashton Embry Ph.D, for the cause and most effective treatment of Multiple Sclerosis, in his series of essays on the subject, is not only plausible and credible but also represents the most commonsense approach available to sufferers intent on fighting this condition."
This extremely active group is an excellent source of support and information. They are keen on help to those new to dietary response to MS. The Best-Bet Diet Support Group is hosted by the MSRC (Multiple Sclerosis Resource Centre) in the UK, who collects many other good advice and who publishes Pathways, a newsletter both by mail and on-line on topics of interest to the MS population

 BEST-BET SUPPORT GROUP.This hyperactive group focuses on dietary influences on MS and mutual support of those looking into the dietary recommendations of Direct-MS and Dr. Ashton Embry. It is public to read but moderated to join. When you request to join, you will receive a set of the key papers and prinicples that guide the group. They have a related group specializing in just developing recipes.

BEST-BET SUPPORT GROUP DISCUSSION ARCHIVE. The deliberations of some 600 participants in the Yahoo Group are daily digested into a searchable data-base at ms-diet.org. This permits key word search of many years of sharing. Searchable also is the recipe group's proceedings as they explore and develop good food recipes within the restrictions of the Best Bet Diet Guidelines.

Dr. Roy Swank was a neurologist and a researcher on MS. I was fortunate shortly after diagnosis to be introduced to his book The Multiple Sclerosis Diet Book, by a man who had been his patient for a long life living with MS. I consider this knowledge helped halt the progress of my own MS. It was and remains astonishing that this early researcher's work, published in the principle medical journals, should be unknown and disregarded by medical professionals today. The book tells the story of the discovery of the relation of diet to MS, most especially the risk of fatty foods. There are many graphs and microscope photos as well as lists of published papers. The MS-DIRECT community continues to collate, promote and further research on ideas related to diet. They have added much to Dr. Swank's work. Click left to visit the website that continues his work and to purchase this foundational book.

Dr. Linus Pauling was a medical doctor and a research biologist, who became noted for "megavitamin therapy" in the '60's. (He also won 2 nobel prizes.) His views have largely been refuted and refused by the mainstream medical community, and embraced by many in the alternative medical field. Vitamins and Supplements to him were not medicines, but food, the missing parts of our modern diet. We had evolved for a diet quite different than our present circumstance permits. Pauling felt that each of us is different, so that the process of discovering how much of a vitamin or supplement one should take was an individual matter. Each of these has a Minimum Amount which is essential for health and to avoid certain diseases. But what should be the Optimum Amount for health? That is for us each to find out. Past the point of optimum, is simply a waste of money. Pauling discusses at length in his books the ultra low toxicity of vitamins. I found his advise sensible and useful - most especially respecting vitamin C.

From My Own Experience

Water Catheter System.  Like many who have MS, I have impaired bladder function. And worse, I have paresthesia which makes certain places hypersensitive to touch. Bad combination. Available drugs have unacceptable side effects to me. Permanent catheterization has many problems and much inconvenience. Over a few years of research and experimentation I devised what I call the Water Catheter System and have no problems. By self-cath every 4-6 hours, I have a normal life and no more of the dreaded problems of bladder infection. For the full story including reference papers, and details of the kit which you can assemble yourself, click on the picture of the kit to the left.

Ginkgo Biloba - a return to clear thinking. Many MS folks experience deterioration of cognitive function. Little surprise since the attack is on nerve cells. Like other symptoms it is a slow steady slide, and it's a bit hard to tell from "inside". How can a brain determine it's own decline? But for some, for me, this herb has restores thinking. Like many such herbal remedies, there is denial and opposition, some of which is sincerely based on honest scientific effort to test the old tradition. I can only share my experience then in this little review. Just click the picture of these marvellous leaves. I most highly recommend the supplement.

Paprika - a remedy for "needles and pins". I have had to endure prickly sensations in my hands and feet, legs and arms for a few days at a time every few weeks steadily since the start of my MS. It's cyclic coming and going made it difficult to complain about, but last year it got desperately worse.Some experimentation found an unusual but effective remedy. The spice paprika. Click left for more details.

no further story on the bootsThese Boots were made for walking.Quite literally if it were not for boots and wool socks, I would need a wheelchair. My feet hurt that much - like walking on gravelly sand. And my ankles don't last very long in regular shoes. But with boots I can walk a mile if I have to, around a mall a reasonable amount, and all about the aircraft hangars where I work each day. I've worn cowboy boots since just before I got MS 10 years ago because they make it far easier to walk on concrete hangar floors as well. The best type are "Ropers" which have regular heels. Work boots that lace up work also.

The false teeth on the left were George Washington's, not mine. But removing my own mercury laden teeth was a most helpful thing to better general health and energy. There is a serious debate in dentistry about the dangers of amalgam and its possible connection to MS. Mercury is a known nerve toxin, and it seems a good idea just to eliminate the possibility. I also had some history of making mercury barometers, which might have contributed. Who knows for sure? But it seemed sensible to me. It costs nothing to be cautious. Dentists are reluctant to desist using mercury fillings for liability reasons. And amalgam is statistically safe. It's risk is a risk to groups of sensitive people below the general population. (Though many European nations regulate amalgam use for pregnant woman). Also the notion from the dentists that false teeth are for old folks and leads to poor nuitrition is simply not true. I wish I had acted as early as I had understood the danger of mercury. It's all in your head by Hal Huggins is a good discussion of these matters.

July 5, 2002. Today is a special day for me. It's 10 years since my first MS episode and 9 since MRI confirmation of MS. There was a year and a half of steady decline to 2 points on the old disability scale before I discovered Drs Swank and Pauling. Then a few years later, Embry and MacDougall. I feel that these good people are the reason for my good news this afternoon after a visit with my neurologist and the review of my new MRI. It's spring finally now in Calgary and the crocus is out, the trees are budding. And that's what this news feels like. Spring indeed!
My first MRI had 3 brain and 3 spinal scars. This new MRI was shows only 2 tiny brain spots and one medium spinal scar. Naturally, the neurologist thinks I'm just lucky. I believe diet and supplement have controlled this dragon and slowed its attack - that we slid down the slippery slope only another point to 3 points in those 7 years.
Rather humourously, he has decided I no longer have MS, since 3 brain scars are his current minimum definition of MS! Like the princess naming "Rumplestiltskin" I believe he thinks the troll might disappear now. How sad and silly, I thought as I walked out into the clear spring air with a bounce to my walk - on my very sore feet!
But the dragon is sleeping and I am content to keep the score at 3 scars and 3 on the EDSS scale. These years of study and trial and much advice from MS support groups has given me the secret of the sleeping potion for that dragon.It is also encouraging that the sclerosis has diminished. If it is not merely some cyclic phenomena, it suggests there might be slow healing of the myelin to some degree with the Best Bet Diet. In any event, I am content that the dragon sleeps. And even more resolved to continue down the BBD road.

PS - Still sleeping in 2007.

Medical References

This is a page of brain movies from Harvard. There are a lot of images here and its an interesting place to spend some time just looking at these neurological samples. Click on the MS group, and then select the image like the one to the left. You will then see a 3D time sequence of an MS patient. When one sees the coming and going of the lesions one wonders about the mechanisms that make things diminish! Clearly an MRI is not a static picture in time, but captures a moment in time. While some sclerosis seems fixed, others come and go over the course of the sample of 18 months. What then is the mechanism that if only for a short time reduces the image? Can it be a temporary healing?

Another Harvard project. This is a training site. It is your brain in pictures. There are 106 brain structures. Each sub-page here consists of a nifty graphic and plenty of medical terms. The folks at Harvard also display the visual results of brain ailments like stroke and Alzheimer's -- even Mad Cow Disease. Some section contain accompanying lecture notes and nearly all are geared for the medical student. Still, it's one of the first (and best) examples of what the Web can do to help explain the human body. There are two patients with MS with time sequences and multiple slices of MRI.

The University of Utah Health Sciences Center. This site is standard introductory teaching material for physicians with lectures and videos. It hasn't been updated since 2000 but is nevertheless excellent material. How excellent that the university shares this information.
""This site is designed as an introduction to multiple sclerosis for medical students and physicians in training. It is not a comprehensive guide to the disease. As such the information may not be sufficient to address specific patient problems and these should be handled by physicians familiar with the specific clinical details relevant to the individual patient. We invite comments from all users of this site."

Help Groups:
Multiple Sclerosis Society of Canada.
Here is much information about the disease, progress in MS research, available services, details about fund raising events and donation opportunities and quick access to the MS Society in your region and local community. This is mainstream medical help and advise. They are a principle support and help for most personswith MS..

MS Support Group - Multiple Sclerosis.
"We are people sharing information on CURING Multiple Sclerosis. Join this group and get a support and knowledge necessary for curing and preventing reoccurrence of this disease. We are discussing about: Mercury, MSG, ASPARTAME, Lectins, Amalgam, Blood type Diet, Hyperberic Oxygen therapy, Cleansing bowels Dental cleanse kidney, liver and Gallbladder cleanse. massage, Herbal formulas, Parasite killing herbs, enema, salty water, Zapper,"
This enthusiastic group is definitely alternative - to the extreme. They are also very angry at the medical establishment. Yet much of their discussion is very worthy. They are frank, honest and supportive.

21 May 07