[lefthanded]

I am in the process of making my first appointment at a local MS clinic. I don't want my symptoms to spell out MS, but some of them are getting too severe to ignore, or to neglect to have checked out.

Up until I was diagnosed with severe ulcerative colitis in 2002 I was the picture of health. In the course of 4 surgeries surrounding the removal of my colon and creation of a j-pouch (so I don't have an ileostomy) I took several courses of flagyl, which they now blame for my peripheral neuropathy . . . which is why I discovered this forum. After all the surgeries I developed/was diagnosed with Crohn's. But I have come to the conclusion that my symptoms must be addressed, and MS at least ruled out, if that is the case.

My fatigue I have always attributed to very broken sleep, no more than 3-4 hours at a stretch before my digestive system awakens me. But it has been getting worse, in spite of normal blood work. And the fatigue seems to strike somewhere between 3pm and 7pm with some regularity. It is of the variety that feels as if you have spent the day in a swimming pool, and hauling your body out on land leaves you feeling weighted down, with heavy arms and legs.

I have never had a stellar sense of balance or great coordination, but for my whole life attributed that to being non-athletic. But the light-headedness and real vertigo were not explained after a visit to an ear/nose/throat specialist, who did such a complete exam it included a hearing test and multiple vertigo tests for inner ear issues. An episode of vertigo, made considerably worse by laying down, prompted my visit to this specialist.

My feet are almost completely numb. Two sets of EMG/NCV tests do not show slowing of the nerve impulses, and this has been carrying the diagnosis of small nerve neuropathy. But it has progressed into spasticity in my feet and ankles. A podiatrist just said I needed to stretch my achilles, but even though I do that throughout the day on a regular basis, my feet still feel as if they are locking into one position, being crushed, or contorting on their own into grotesque positions. Walking is getting very painful, and my feet feel as if they are broken, or fell like they have lumps on the bottom, or won't bear weight. It has been slowly progressing up my legs.

Although stress from the chronic pain of Crohn's can cause the mind to surrender, the fact that increasingly I have trouble finding words, must proofread everything for nonsense typing (used to have decent typing skills), transpose letters and words often, and my ability to concentrate is disappearing are of significant concern for me.

And over the last year my GI reflux has increased. Of course, with a greatly altered GI system it is hard to separate issues.

My symptoms become almost unlivable when it is hot and humid.

But when I came across a symptom that not everyone has . . .the MS girdle "hug" . . . the tears came. I not only get the tight band feeling, but it moves, mimics gall bladder pain (had that out) and makes me constantly fear that I have terrible adhesions strangling me inside . . . all of which would make me call my gastroenterologist, except for the buzzing. I get this buzzing vibration in my torso . . . that has made me check my laptop to make sure it is not touching me, and has even caused me to check to make sure we are not having a small earthquake! I live 25 minutes outside of Seattle, and the Pacific Northwest is one of the MS hotspots nationally.



What can I expect (and not expect) when I go to my first appointment? I know not all clinics are alike, but I am somewhat clueless as to what to expect. And am I crazy? I know I am getting afraid for my future . . .

[ewizabeth]

I have both MS and GERD (reflux). I've had IBS off and on over the years.

I've had most of the symptoms you described at one point or another with the exception of MS hug.

It sounds like it could possibly be MS but like you said, your pre-existing digestive issues could be clouding something else? (That's the way I read it anyway. )

If it's a bonafide MS clinic they should be able to either diagnose or rule out MS, eventually. Sometimes it can take awhile though so be prepared for lots of tests and some waiting and seeing. A small percentage of people are diagnosed quickly but it isn't ususally the case since MS can mimic so many other illnesses.

Take care and keep us posted on whatever you find out.

[SallyC]

Welcome to our forum, Lefty, nice to meet you.. It sounds like you have enough on your plate, without MS..

Keep an open mind and don't bombarde the Neuro with too much at once. The DX process can be long and confusing, at first. Check in after your initial visit and let us know what the Doc thinks and what tests will be performed.

We'll be right here..

[braingonebad]

Good advice from the others. I don't know how hard it was to dx the other issues you've had, but you probably had some things ruled out to in order to find what you did have. This will be like that too.

I can empathize with your situation, because the more things you have going on, the more complicated it gets sorting out what sx come from where. This may not be easy.

I think it helps to go in with an open mind (this could be several things besides ms) and be willing to endure whatever tests you need to do. Rule out things as suggested, and don't take it too personally if one doc runs out of ideas and you have to move along to another.

I wish I had known, right out of the gate, that the docs did not actually think I had all the diseases/disorders they were testing me for. Would have saved me a world of worry. They don't always say what they think.

[Dejibo]

Welcome to the forum.

I too have tummy troubles. my tummy has always been ultra sensitive.

pull up a chair, and grab your reading glasses. tons to read here.

[jccgf]

Hi lefthanded~

Given your history of ulcerative colitis and Crohn's Disease... please be absolutely sure to rule out B12 deficiency and Celiac Disease/ Gluten Sensitivity, as well. Some of the neurological symptoms associated with B12 deficiency are reversible, if it is identified and treated. You want a B12 in upper range, certainly well above 400. People can have neurological complications with low normal B12 levels, I did.

I strongly suspect you are B12 deficient based on your digestive disorders and neurological symptoms. I also suspect you have food sensitivity... gluten, casein, soy, and yeast are top offenders.

Both B12 deficiency and gluten sensitivity can mimick MS in symptoms, and can cause progressive and permanent neurological damage if not identified and treated.

Here are several pages of The Gluten File. Be sure to check out the B12 deficiency symptoms page...many symptoms you mention are similar to those I had when B12 deficient.

http://jccglutenfree.googlepages.com/diagnostictesting
http://jccglutenfree.googlepages.com...ationsofgluten
http://jccglutenfree.googlepages.com...ciencysymptoms
http://jccglutenfree.googlepages.com/b12deficiency
http://jccglutenfree.googlepages.com/multiplesclerosis
http://jccglutenfree.googlepages.com/crohn's,ibd,ibs

Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.
Vitamin B12, demyelination, remyelination and repair in multiple sclerosis.
PMID: 15896807 May 2005

Unfortunately the rate of misdiagnosis remains around 5%-10%, indicating that 1 in 20 patients thought to have MS has, instead, a condition resembling MS. Conditions often confused with MS may be inflammatory (systemic lupus erythematosus, Sjogren's syndrome, vasculitis, sarcoidosis, Behcet's disease), infectious (Lyme disease, syphilis, progressive multifocal leukoencephalopathy, HTLV-1 infection, herpes zoster), genetic (lysosomal disorders, adrenoleukodystrophy, mitochondrial disorders, CADASIL), metabolic (vitamin B12 deficiency), neoplastic (CNS lymphoma) and spinal (degenerative and vascular malformations) diseases. The differential diagnosis of multiple sclerosis: classification and clinical features of relapsing and progressive neurological syndromes.
PMID: 11794488 Nov 2001

Neurological manifestations of gastrointestinal disorders are described, with particular reference to those resembling multiple sclerosis (MS) on clinical or MRI grounds. Patients with celiac disease can present cerebellar ataxia, progressive myoclonic ataxia, myelopathy, or cerebral, brainstem and peripheral nerve involvement. Antigliadin antibodies can be found in subjects with neurological dysfunction of unknown cause, particularly in sporadic cerebellar ataxia ("gluten ataxia").
Neurological manifestations of gastrointestinal disorders, with particular reference to the differential diagnosis of multiple sclerosis.
PMID: 11794474 Nov 2001

CONCLUSIONS: Prevalence of celiac disease seems to be high among patients affected by CD, and this finding should be kept in mind at the time of the first diagnosis of CD; a gluten-free diet should be promptly started.
High prevalence of celiac disease among patients affected by Crohn's disease.PMID: 15973121 July 2005

Also, are you familiar with the Specific Carbohydrate Diet?
http://www.breakingtheviciouscycle.i.../beginners.htm

It has worked miracles for some with Crohn's Disease, Ulcerative Colitis, Celiac Disease and other intestinal disease. Here are some testimonials:
http://www.breakingtheviciouscycle.i...estimonies.htm

[lefthanded]

Thanks, everyone. I have an appointment on November 23. Quicker than expected, which is good.


jccgf . . . yes, I have been tested again and again for celiac, and always negative. B12, already taking it and test well into the sufficient numbers (going to pick up latest lab results today.)

[Erin524]

Originally Posted by lefthanded

Thanks, everyone. I have an appointment on November 23. Quicker than expected, which is good.


jccgf . . . yes, I have been tested again and again for celiac, and always negative. B12, already taking it and test well into the sufficient numbers (going to pick up latest lab results today.)

What do they call "sufficient numbers" on your B12 test? Do you know what the numbers were?

[jccgf]

Originally Posted by lefthanded

Thanks, everyone. I have an appointment on November 23. Quicker than expected, which is good.


jccgf . . . yes, I have been tested again and again for celiac, and always negative. B12, already taking it and test well into the sufficient numbers (going to pick up latest lab results today.)

Just be sure they included antigliadin IgG in the testing. It is often excluded... but does indicate gluten sensitivity even in the absence of celiac disease... and is still clinically significant.... very significant when it comes to gluten related neurological disease. Glad to know you have the B12 covered!

[lefthanded]

Saw the new neuro today. In today's exam he discovered what he called contradictions to my diagnosis of sensory peripheral neuropathy, in that my reflexes, which he said should be absent or very weak, were hyper-acute. He feels I may have been misdiagnosed. My MRI is this coming Sunday. Happy Thanksgiving, I guess . . .