Why is it all MS or not MS

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Why is it all MS or not MS

Postby MattN » Sat May 31, 2014 9:15 pm

Perhaps this is not the right place for this question. I will give a little background on my specifics. I had some kind of strange neurological stuff a little over ten years ago with crawly skin numbness on the feet, supersensitivity on the face and inside my nose. Much of it has passed, but I have had chronic mild tinnitus for years, and some very mild wavy lines in certain visual fields. A couple of months ago, one finger became a little painful and eventually got a little cyst. Dermatologist thought RA , blood work said no. In the past months pretty much all of my fingers have some redness at the tips and some pain. In the last couple of weeks I have had moderate numbness on my feet and some pain from the little toes. My naturopath wants to test for B-12 and to try a gluten free diet, so I am hoping that will help.

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
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Re: Why is it all MS or not MS

Postby jimmylegs » Sun Jun 01, 2014 5:07 am

hi matt and welcome to the forum.

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.

i have not personally read in detail, but member vesta has broken down MS into several categories which you can find pretty easily if you use the forum search to look for posts by author vesta.

there are lots of other 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.
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Re: Why is it all MS or not MS

Postby CaliReader » Mon Jun 02, 2014 7:43 am

Hi Matt,

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
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Re: Why is it all MS or not MS

Postby NHE » Mon Jun 02, 2014 2:52 pm

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.


A good book discussing neuroplasticity - "The Brain That Changes Itself" by Dr. Norman Doidge, 2007.

reading-nook-f18/topic4974.html#p35000
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Re: Why is it all MS or not MS

Postby Anonymoose » Mon Jun 02, 2014 3:11 pm

I know this is venturing off topic but for neuroplasticity, interactive metronome can be used to help things along. Games like wii fit, xbox w/camera games, and Nintendo handheld games like brain age will help too.

http://www.interactivemetronome.com
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