Seeking advice on how to proceed (symptoms suggestive of MS)

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Seeking advice on how to proceed (symptoms suggestive of MS)

Postby jellyphish » Fri May 29, 2009 3:34 pm

It's always difficult to post something like this, but i'll try as i could use a bit of support and advice.
I have been having MS like symptoms for about three years, but they were always mild and i was in graduate school as they were progressing but didn't have time for anything other than school if you know what i mean.
I have another condition known as primary spinal stenosis which also progressed at about the same time as the other symptoms so i went to see a neurosurgeon who (of course) suggested surgery and whilst talking to him about the other "weird" symptoms he said "it sounds like MS." I disagreed having administered Avonex to a friend for a year as our symptoms were seemingly quite different.
This visit was about nine months ago, since then the weird symptoms have generally increased and were made significantly worse this past month when i contracted influenza (which has yet to completely resolve).
I then went to see my GP (changed because my previous one was, well, to put it bluntly an idiot), and he said rather apologetically "you need to consider the definite possibility that you have MS." And my reaction was "no i don't, MS presents as abc, that's not how this is presenting..." he was rather surprised at a patient actually disagreeing and having information (though biased) to support his hypothesis. So, he relented but still had that look like "it fits."
Well as i released my denial, i went through ALL of the symptoms, now mind you, i just got out of grad school with tremendous debt, i ended a long relationship about six months ago, so i live alone and most of my close friends have moved away; this is the most scariest thing i have ever dealt with in my life (and i know that everyone on this site will know that one!). So sitting down and writing it all out it became readily apparent that i am in the beginning stages of MS, and so post-denial i am wanting to get a handle on how to proceed.
I know that mri's will show lesions, but i have had two in the past two years and frankly they freak me out! Only a madman could create such a truly claustrophobic machine! Plus as i have a pre-existing condition, no insurance would even begin to talk with me, so i went on disability and now have state insurance which fights any such tests with a vengeance (which is wobbly at best considering the state of the economy).
I truly appreciate everything i have read on this site and the community here, but like most i am overwhelmed with how to proceed. I don't feel that i need a differential diagnosis, but perhaps i do?
Also, i will see about getting blood work as well and go even farther to look at endocrine levels as well as overall organ function, particularly pancreas and kidneys.
One of the most disturbing symptoms is that i have had bladder issues my entire life (two surgeries, with another scheduled for later this year), and yet just this last few weeks have been experiencing it becoming spastic and chronically infected (with blood as well, though that could be from surgeries).
Anyhow, i would appreciate any advice on how to proceed, our heads are foggy enough without needing that crystal ball to guide us on the best path, the next best thing are those who've already walked the path.
Kind regards...Tym
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Postby lyndacarol » Fri May 29, 2009 6:14 pm

jellyphish-- You seem to be considering your possibilities very sensibly. As the member of this website who believes that excess insulin (hyperinsulinemia) is fundamental to MS, I was glad when you wrote: "Also, i will see about getting blood work as well and go even farther to look at endocrine levels as well as overall organ function, particularly pancreas and kidneys."

I think it is important to begin with a thorough examination, which includes testing of hormone levels -- TSH, T-4, T-3, insulin (!), etc. Ask for a copy of every test result you receive and keep them in your own file.

Read everything you can find on the subject of MS. Suggestions in the Reading Nook forum here are a good place to start.

In your reading or from members here, you will learn that there is no real correlation between lesions and MS symptoms; in fact, some people with many MS symptoms have NO lesions at all!

BTW, concerning the bladder, I believe once again that excess insulin is stiffening and thickening the smooth muscles that surround the bladder and interfering with its proper functioning

Welcome to This Is MS, Tym.
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