MS-Related Question(s)

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MS-Related Question(s)

Postby Pat1 » Mon Apr 08, 2013 12:18 pm

I was diagnosed with MS about 20 years ago. I have experienced many problems over the years such as loss of my eye sight for several hours, loss of muscle function/coordination in my legs for several hours, bladder problems, not to mention the constant issues of heat intolerance, debilitating fatigue, and cognitive problems.

I recently changed neurologists and she ordered a baseline MRI of the brain and spine. The results showed very little evidence of lesions in my brain (1 small area), and no evidence of MS in my spine. The neurologist does not believe there is enough evidence to suggest MS.

Well, not that I would wish this disease on anyone, at least it gave me answers to the myriad of issues that affect me. I have been on an emotional roller coaster ever since my neurologist reviewed the films with me.

I have so many questions, and I don't know where to turn at this point. Any suggestions?
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Re: MS-Related Question(s)

Postby jimmylegs » Mon Apr 08, 2013 12:25 pm

hi and welcome :) that turnup of events is very interesting while understandably disconcerting... may I ask which approaches you have taken to dealing with ms already, over the last 20 years?
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Re: MS-Related Question(s)

Postby Pat1 » Mon Apr 08, 2013 12:38 pm

I was prescribed Betaseron when first diagnosed. Because I was working full-time and concurrently working on my Masters degree, I found it quite difficult to stay on the drug . . . I felt sick all the time. I haven't been on any meds since. Because of insurance changes and moving to another state, I have seen 4 different neurologists. None of them addressed my MS other than 10-15 minute checkups. That is why I changed to a neurgologist my primary physician recommended due to her significant background in MS.
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Re: MS-Related Question(s)

Postby jimmylegs » Mon Apr 08, 2013 1:07 pm

sounds busy, what's your masters about?

have you ever looked at the nutrition side of things? not in the mainstream for treatment but it's all over the research as well as certain leading edge health care practices. plus has the advantage of being quite general as opposed to ms-specific.

there's LOADS out there on diets etc for ms. here are my thoughts if you are interested: regimens-f22/topic2489.html
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Re: MS-Related Question(s)

Postby HappyPoet » Tue Apr 09, 2013 12:02 pm

Hi Pat,

While you have many neurological symptoms to deal with, not having MS would be great. Is your new neuro going to rule out the usual MS mimics, such as Lyme disease? Ask for complete blood work, including the test for Lyme disease.

Also, if you haven't been seen by a neuro-ophthalmologist for your loss of eyesight, try to schedule an appointment with one. Do you ever wake up with loss of eyesight? Is that the only time it happens? Do you ever have pain in or behind your eyes? If yes to all three questions, your loss of eyesight might be like mine which happens because in my sleep, without knowing it, I rub my eye(s) so hard due to Optic Neuritis pain that the blood supply to the eye(s) is stopped; sight returns within a couple of hours or less. The prescription drug Keppra has helped greatly to reduce my eye pain.

It's wonderful news that after 20 years, your brain and spine are in such good condition, lesion- and atrophy-wise. I'm very happy for you. Try to relax and focus on the differential diagnosis of MS.

Best of luck.
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Re: MS-Related Question(s)

Postby centenarian100 » Mon Apr 15, 2013 2:39 pm

Can you give a little bit more detail about your history of your symptoms and the full report of the MRI scans?
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