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Not Quite MS

Posted: Fri Jan 31, 2014 12:57 am
by jayman
Hello Everyone,

Something happened to me 12 years ago that looked like MS at first, but a team of MS specialists said they didn't think it was. So I was sent to the chief Neurologist of a large University Hospital. He did his own Lumbar Puncture and he read my MRI pics himself. He even did 3 sets of blood work. He concluded I didn't have MS. However I do have Demyelinating plaque between C2 - C3. I also have white specs on my cranial MRI. The damage in my cervical spine causes constant pain in my right arm. But when the Doc said I didn't have MS I was happy and left. Lately I looked up his report, and he wrote I have Demyelinating Disease. Does anyone here have that? I am constantly exhausted and I'm wondering if it can be caused from this Demyelinating Disease? But I am 61 with other health issues.

I have a cousin who was dx with MS several years after I got the nerve damage. He doesn't speak to me much, but last year a new neurologist put him on Adderall because the Doc says MS causes exhaustion and a loss of cognitive abilities. I feel constantly exhausted and I'm wondering if it's coming from this Demyelinating disease. Does anyone have any opinions?

Re: Not Quite MS

Posted: Fri Jan 31, 2014 5:27 am
by jimmylegs
hi there, jayman :)

the nutrient problems known to exist in the average ms patient can be linked to many of the symptoms experienced, including fatigue. as TiMs member 'anonymoose' flagged to my attention recently, there are researchers working on a related study (nutrients vs fatigue) as we sit here.

nutrient deficits have complex interconnected effects and can affect each person differently... wondering if any docs have referred you to a nutrition or diet specialist?

Re: Not Quite MS

Posted: Fri Jan 31, 2014 5:34 am
by jayman
Hi Jimmy,
No. No Docs have recommended me to anyone because I haven't complained about this too much. But I have so many digestive disorders I don't eat healthy at all.

Thanks

Re: Not Quite MS

Posted: Fri Jan 31, 2014 8:23 am
by lyndacarol
jayman wrote:Hello Everyone,

Something happened to me 12 years ago that looked like MS at first, but a team of MS specialists said they didn't think it was. So I was sent to the chief Neurologist of a large University Hospital. He did his own Lumbar Puncture and he read my MRI pics himself. He even did 3 sets of blood work. He concluded I didn't have MS. However I do have Demyelinating plaque between C2 - C3. I also have white specs on my cranial MRI. The damage in my cervical spine causes constant pain in my right arm. But when the Doc said I didn't have MS I was happy and left. Lately I looked up his report, and he wrote I have Demyelinating Disease. Does anyone here have that? I am constantly exhausted and I'm wondering if it can be caused from this Demyelinating Disease? But I am 61 with other health issues.

I have a cousin who was dx with MS several years after I got the nerve damage. He doesn't speak to me much, but last year a new neurologist put him on Adderall because the Doc says MS causes exhaustion and a loss of cognitive abilities. I feel constantly exhausted and I'm wondering if it's coming from this Demyelinating disease. Does anyone have any opinions?
Welcome to ThisIsMS, jayman.

Gluten sensitivity can develop at any time in one's life; maybe that is what happened to you 12 years ago. Although wheat/gluten affects the small intestine, it does not always result in intestinal problems.

Dr. Gary Kaplan, D.O., explains the 4 forms of celiac disease (the most severe end of the gluten sensitivity spectrum): 1. Typical 2. Atypical or Extra-intestinal 3. Silent 4. Latent.

In part 2 of his 7-part presentation, Gary Kaplan, D.O., described the atypical or extra-intestinal form:


At 0:30 he says that the atypical/extraintestinal form includes minimal gastrointestinal symptoms AND may include:

iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain (Is your "constant pain" in the joints?)
infertility
neurologic symptoms (ataxia – this is the inability to control muscles; neuropathies – this is tingling/numbness or even the "burning pain" you described in an earlier post)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - list available at http://www.aarda.org/
migraines

You may even find some of your other health issues on this list. I am not a physician, but it might be worth trying a gluten-free diet for two months or longer and see if ANY problem improves.

Perhaps the following was already done in the blood tests that your doctor ordered. Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

All the best to you.

Re: Not Quite MS

Posted: Fri Jan 31, 2014 9:03 am
by jimmylegs
OH okay - good to know. can you elaborate on the digestive disorders?? do they have you on any medication associated with GI problems? any PPI drugs in the mix?