No idea what is going on

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No idea what is going on

Postby chadk » Mon Nov 19, 2012 1:32 pm

Hello!

Thank you for taking the time to help here. My Dad has had MS for over 15 years and is paralyzed on the right side of his body. He recently had a MRI and to the doctors surprise everything looked 100% normal. He has seen numerous doctors and specialists and they are all scratching their heads because they don't know why he's this disabled with a normal MRI. He's going to get another one soon, and he still thinks it is MS.

Anyone experience anything like this?

Sadly I have also been experiencing numbing issues. I already have Crohn's disease which I have had to have surgery for and I also have Ankylosing Spondylitis. Now I have been having numbness in my left side, mostly my hand, wrist and elbow and sometimes leg. Had an MRI which they said was all normal. Saw a neurologist who did some painful shock tests on me and still thinks things are normal. BUT, I am still feeling numbness, as if I dipped my entire arm in ice water.

If anyone has any advice I can sure use it. Been very scary for me :(

Thank you!!

Chad
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Re: No idea what is going on

Postby jimmylegs » Mon Nov 19, 2012 3:16 pm

hi and welcome. sorry to hear about your dad. it's well known that mri has little to do with symptoms, but it's certainly odd that his scan is normal. what has your dad's symptoms/progression been like over the years, besides the current right side paralysis?

question: ever looked at nutritional intervention for crohn's and/or ankylosing spondylitis?
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Re: No idea what is going on

Postby chadk » Mon Nov 19, 2012 4:11 pm

Hi Jimmy,

Thank you for the response! He first started having numbness in his right foot, and then started limping. He was diagnosed with MS over 15 years ago, and since then it has slowly progressed. He is to the point where he now uses a walker and electric wheelchair to get around, and he sometimes gets electric shock-like pains in the side of his head. He can no longer really use his right arm. His hand, fingers, arm etc. is all paralyzed.

For the Crohn's and AS, I have been really careful about what I eat, but haven't been eating much differently than before I was diagnosed, I just have to be careful during flare-ups.
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Re: No idea what is going on

Postby lyndacarol » Mon Nov 19, 2012 6:07 pm

Welcome to ThisIsMS, Chad. Since you asked for "any advice," I will offer you my thoughts: about your dad… is it possible that he was misdiagnosed with MS 15 years ago? I am surprised that he would have a normal MRI after such a long period of time. My initial tests were normal, but things changed and I was diagnosed with MS after a couple of years.

About your case… you know that Crohn's disease and ankylosing spondylitis are considered in the group of 80+ "autoimmune diseases" (MS is listed in that group, too.)? It is not uncommon for someone diagnosed with one autoimmune disease to be diagnosed with a second or even a third later on. My mother-in-law was first diagnosed with rheumatoid arthritis, and later with underactive thyroid (Hashimoto's disease), and then Sjogren's disease – these are all considered to be "autoimmune diseases."

Since scientists do NOT know the cause of MS, there are many diverse ideas about the disease. My own suspicion concerns excess insulin (NOT to be confused with glucose); I know that insulin is very irritating to many tissues in the body; I think that everyone should ask his doctor to perform a "fasting blood insulin test." I suspect that a faulty pancreas or poor diet cause the body to make too much insulin. The insulin blood test is relatively inexpensive; the optimal result should be 3 UU/ML or lower. I urge you and your father to have this test.

All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: No idea what is going on

Postby dania » Sat Dec 01, 2012 6:01 am

Have him checked for normal pressure hydrocephalus. NPH.

http://hydroassoc.org/docs/SHYMA.pdf
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Re: No idea what is going on

Postby jimmylegs » Sat Dec 01, 2012 9:55 am

fyi re crohn's
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19256.html#p186731

some research titles/excerpts:

Nutritional disturbances in Crohn's disease
"many patients, experiencing what can be a chronic and debilitating illness, may suffer unnecessarily from the consequences of deprivation of vital nutrients."

Risk factors for vitamin D deficiency in patients with Crohn's disease
Vitamin D deficiency and bone disease in patients with Crohn's disease.
The frequency of vitamin D deficiency in adults with Crohn's disease
Zinc deficiency in Crohn's disease
Zinc deficiency in men with Crohn's disease may contribute to poor sperm function and male infertility
Zinc deficiency: a complication of Crohn's disease.
Zinc and vitamin A deficiency in patients with Crohn's disease is correlated with activity but not with localization or extent of the disease.
Zinc deficiency manifested by dermatitis and visual dysfunction in a patient with Crohn's disease
Zinc-deficiency-induced retinal dysfunction in Crohn's disease
Vitamin A deficiency in Crohn's disease
Folate deficiency in Crohn's disease: incidence, pathogenesis, and treatment.
The diagnosis of iron deficiency in patients with Crohn's disease

Terminal Ileum Resection Is Associated With Higher Plasma Homocysteine Levels in Crohn's Disease
"Terminal ileum resection contributes to elevated plasma tHcy levels in CD cases. We recommend tHcy screening in patients with CD, especially in those with prior history of TI resection, and the initiation of vitamin supplementation when appropriate."

The relation between osteoporosis and vitamin D levels and disease activity in ankylosing spondylitis
Relationship between disease activity and serum levels of vitamin D metabolites and parathyroid hormone in ankylosing spondylitis
Association of 1.25 vitamin D 3 deficiency, disease activity and low bone mass in ankylosing spondylitis
Serum osteocalcin and vitamin D metabolites in patients with ankylosing spondylitis.

Redistribution of minerals and trace elements in chronic inflammation--a study on isolated blood cells from patients with ankylosing spondylitis
"The cellular profile of metal variation was conspiciously altered in patients (n = 29) with ankylosing spondylitis compared with the profile found in age and sex matched healthy controls... Zn was reduced in all 3 cell types (p less than 0.001)... Cu was below the detection limit in the different cell types isolated from patients..."

Ankylosing spondylitis and selective IgA deficiency.
Selective IgA deficiency and Crohn's disease: report of two cases.
Protein profile and vitamin A in children of school age in Ivory Coast
"This study showed that the retinol binding protein and the immunoglobulin A are lower in children with vitamin A deficiency..."

this one is outright veterinary but really, considering all the animal studies applied to human health questions.. what is the diff??:
Effects of Combination Dietary Conjugated Linoleic Acid with Vitamin A (Retinol) and Selenium on the Response of the Immunoglobulin Production in Mice
"...dietary CLA increased immunoglobulin production in a dose-dependent manner. Vitamin ADE ["vitamin A (usually used in the form of ADE complex)"] and Selenium combined with CLA also increased the immunoglobulin production response except serum IgE."

Nutrition and the immune system: an introduction.
"Of the micronutrients, zinc; selenium; iron; copper; vitamins A, C, E, and B-6; and folic acid have important influences on immune responses."

so. in your case, tests of serum zinc, serum 25(OH)vitamind3, serum magnesium, serum copper, serum ferritin, and serum retinol/serum RBP could provide useful info. same for your dad - many of these nutrients are also implicated in ms. because the human body uses nutrients in so many different ways, imbalances can make themselves felt in highly variable manifestations.
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