Newly diagnosed as possible MS

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Newly diagnosed as possible MS

Postby nicolejonesti » Fri Aug 05, 2011 12:46 pm

Hi everyone-
This is my first time posting here! It has been such a long, crazy summer for me! It actually all started a year ago with crazy awful fatigue. I got tons of blood work done, and everything came back fine. My doctor suggested I was depressed. I was depressed, because I was so tired all the time! So I never really went back.

In March I started with these crazy wicked vertigo and dizzy spells. It would feel like the whole floor was coming up on me and spinning.

In April I started feeling this awful sensation in my chest, almost as it was tightening and hard to breath. Went to the ER, every test on my heart came back fine.

In May I started with this super weird perception issue. I felt like my arms and hands were not where they were suppose to be. And they looked funny to me. And wouldn't really do what I wanted. I saw my family doctor, who said I had anxiety. Knowing I did not have anxiety, I made an appointment on my own to see a nuerologist. They ordered a MRI (no contrast) which came back clean. A week after the MRI, I lost part of my vision in my left eye, and see a constant flashing light.

Went to 3 different opthamologists, who said my eye was fine. Had a MRI of my brain and optic nerves, this time with contrast, and it came back normal.

My nuerologist suggested I have a spinal tap to rule out MS. My mom also has MS, and she never had lesions on her brain when first diagnosed. My spinal tap came back last week positive for oligoclonal bands.

Next week I have a MRI of my spine, and all of the evoked potential tests.

Hope to figure this out once and for all.
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Postby jimmylegs » Fri Aug 05, 2011 1:31 pm

hi nicole welcome to the forum. lots of support here.

i focus on nutrition and a lot of your symptoms sound like they are potentially related to the common nutritional problems seen in ms patients. if you are open to that, there's lots to read :)

fyi, virtually none of the standard testing for diagnosing MS patients includes testing for the researched and documented nutritional issues.

by the way, oligoclonal banding indicates chronic inflammation. you can do alot against inflammation with dietary modifications.

one web site listed in my signature below (nutritiondata.com) has a food search tool where you can see the inflammation rating for all kinds of foods, with a dropdown menu to adjust serving size. the site lets you calculate how inflammatory your food is.

if you read the small print about the IF rating it says that average joe should aim for a daily score of +50, but someone with inflammatory illness should go for +200.

feel free to ask me any questions!
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Postby lyndacarol » Fri Aug 05, 2011 2:44 pm

Welcome to ThisIsMS, Nicole. I echo jimmylegs in saying that I think you will find good support here.

Your comment:
In May I started with this super weird perception issue. I felt like my arms and hands were not where they were suppose to be.
reminds me that my doctors almost always do a test of proprioception. My doctor has me hold my arms out straight to each side, close my eyes, and bend each elbow in turn trying to touch my nose with my index finger.

A "normal" person will touch his nose; even with eyes closed he has a sense of where his nose is. I used to always miss my nose – touching my cheek or eye. Lately I am better about hitting the nose.

As you will discover, each of us TIMS members has our own particular area of interest – just as jimmylegs' focus is on nutrition, my obsession is insulin resistance and resulting excess insulin. I think this is the culprit for the beginning of the MS cascade.

In keeping with my angle, I suggest that you request your doctor to order a "fasting blood insulin test" – the ideal result would be below 3 UU/ML. Mine have always been much higher, but still in the normal range according to the lab. (My first one was 12 UU/ML.)

By the way, my first three MRIs did not show any lesions in the brain; my EMG test was normal, too. There are many here who also had perfectly normal MRIs in the beginning (and some NEVER have lesions in the brain).
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Postby jimmylegs » Fri Aug 05, 2011 4:51 pm

whoops i did not remember that i had edited www.nutritiondata.com out of my signature recently - but it is an awesome resource :)
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Postby jimmylegs » Fri Aug 05, 2011 5:00 pm

fyi i also had lost position sense, which corrected when i was on a modified version of the klenner protocol. at first i thought it was from the b vitamins but later i realized it was more likely the high therapeutic doses of vitamin e. here's a study abstract:

Can J Neurol Sci. 1984 Nov;11(4 Suppl):561-4.
A progressive neurological syndrome associated with an isolated vitamin E deficiency.
Laplante P, Vanasse M, Michaud J, Geoffroy G, Brochu P.
Abstract
Several authors have recently reported a neurological disorder associated with chronic vitamin E deficiency in man. Except in one patient, this deficiency has always been secondary to an underlying disease resulting in lipid malabsorption. We report a second case of such a neurological syndrome in a patient in whom vitamin E deficiency was an isolated finding. The clinical picture in our patient was characterized by a diffuse muscle weakness most prominent distally and in the lower limbs, generalized areflexia, a decrease in proprioception and vibration sense and slight limb and gait ataxia. His condition improved on alpha tocopherol therapy so that it is very likely that vitamin E deficiency is responsible for his neurological deficit..."

or if not in full, at least in part. note that they treated this patient with alpha tocopherol not the full E8 complex but that's all i did myself when i did the klenner thing, because i did not know about the E complex at the time.
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