But my real question is in why this disease is called MS. I get it that it is a catch all phrase or a kind of diagnosis by eliminating everything else. But where does that leave us in terms of epidemiology and people really sharing a common disease process. I guess I am suggesting that sufferers be grouped differently in some data base somewhere. For instance those who simply suffer from numbness and tingling might be considered one category and those who have fatigue and loss of function in another. And yes diagnostics such as blood work and lesions can serve as differential criteria as well. Indeed this may open pandoras box in terms of trying to get any common groups of patients who share a similar disease process, but at the moment we seem to have the opposite situation where we all share one big tent
A somewhat separate point is the chorus of all MS is irreversible, Pardon me if I am not a little skeptical that a good many people who have at least qualified with an MS diagnosis somewhere have never had symptoms return/. Maybe a knowledgeable person could help me understand who is keeping track of MS diagnoses and who is tracking the progress of all the patients. Don't get me wrong in that I am saying severe on-going cases are unlikely to resolve. But we would not know if a great many diagnosed with MS had B-12 deficiency. anyway I am sure this is something most of you are aware off, I just wanted to get it off my chest
you're right, many here share your frustration with the catch all dx of MS.
for example, CCSVI has been discussed as a separate condition here at TiMS for several years now. it has its own forum in which you'll be able to find lots of related discussion.
there are lots of other more or less rational ideas circulating here too, which you'll find as you browse the various topics.
over the last few decades, various people have provided nutrient intake recommendations, either in the form of short term protocols (such as klenner) or long term diets (eg swank, best bet, paleo, jelinek, and more recently wahls - you can find discussion on these in the diet forum).
as for b12, it is the best known and longest standing potential nutritional differential dx for ms, and in addition to its being a flavour of the month of sorts here at TiMS at the moment, it's a personal one for me. as a vegan, b12 deficiency was on my file when i was diagnosed in 06. a computer glitch meant the docs didnt see it even though i was telling them in person it was the case.
it turned out i had a much bigger nutritional issue than just b12, and that i shared a variety of nutrition issues that are common to ms patients, also that my levels were not a match for nutrient levels in healthy controls. optimizing nutrient levels (ie typically getting them into the high normal vs low normal range) is my own focus. proper hydration is a key part of that puzzle. once nutrition issues are removed, it seems to me that the docs would have a clearer picture what they're really dealing with and won't end up treating depletion symptoms with drugs rather than essential nutrients.
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
If you could stop new damage from happening, a lot of ms damage can repair itself. Exercise is one of the best ways to work with the brain to repair pathways or build new ones. If you want to research, the technical term is neuroplasticity. It's not a cure because the disease continues to cause damage, but the research suggests you can slow things down.
I also think that Swank and Wahls were onto something re diet. The study reported here supports this. http://multiple-sclerosis-research.blog ... y-are.html
- Volunteer Moderator
- Posts: 5068
- Joined: Sat Nov 20, 2004 3:00 pm
- Has thanked: 1 time
- Been thanked: 7 times
A good book discussing neuroplasticity - "The Brain That Changes Itself" by Dr. Norman Doidge, 2007.CaliReader wrote:If you could stop new damage from happening, a lot of ms damage can repair itself. Exercise is one of the best ways to work with the brain to repair pathways or build new ones. If you want to research, the technical term is neuroplasticity. It's not a cure because the disease continues to cause damage, but the research suggests you can slow things down.
http://www.thisisms.com/forum/reading-n ... tml#p35000