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asleep at mal 9/09
this (from natf) is sometimes me 
11/7/09 15:24
asleep at mal 9/09
(sometimes i'm much worse than this) and a big part of why i don't go out alone anymore - i think maybe migraines are tied to good days, but i am not sure if that is true as i don't always know when i'm not here


i'm pretty sure i was tested for MS in high school and in college (inability to pass certain fitness tests because i was that uncoordinated and blackouts respectively) but i'm going to ask about it again anyway if the tests this time don't give us answers
11/10/09 0:11 (UTC)

I hope it is not MS in your case.

But then I remember how relieved I was when I received my diagnosis because I had something with a name, even if it *was* incurable! I was not mad! It was not all in my head! I was not a hypochondriac with the same health as everyone else who could just not hack it (coz, "everyone gets tired", don'cha know?)!

*more hugs*
11/10/09 1:01 (UTC)
i agree; i too hope MS isn't the cause, but so much of what i've read about memory dysfunction in MS sounds like what i'm (not) dealing with

i know the numbness in my hands/arms/legs is most likely part of the fibro, but at this point none of the treatments we've tried for fibro/cf memory issues have helped, and i'm pretty sure at this point it's not lyme disease as almost a month on cipro and doxy haven't made a difference

nor are my symptoms the same as what i understand about fibro fog - i get that too sometimes, but the part that's bothering me most isn't fogginess, it's like a blank computer screen - i know the information is there, but i can't access it; or worse still, in the middle of something the computer totally locks up and i lose some amount of time completely

on the other hand, i was overexposed to mercury (and carbon tetrachloride, but that apparently doesn't stay in the body the same way) in college (managing the chem lab wasn't a good idea apparently), even minute amounts of seafood are enough to make me violently ill, and i'm afraid that the blanks are mercury toxicity eating holes in my brain; at the time of the exposure there wasn't a whole lot they could do except feed/hydrate me via iv and give me meds to control the nausea and hope my body got rid of the mercury itself - but i've got no idea whether my body did get rid of the mercury or just learned to live with it (hence my sudden i'm now uber sensitive to seafood after that but had no problems with it before) so this round of tests also includes looking for that as a possible cause

too many co-morbid conditions and my past history means my doctors are doing everything they can to figure out what's causing this, but i am ludicrously problematic to diagnose; there are times when i feel like a walking bad joke about invisible illness (do i laugh or cry when my friends hope it's lyme disease? - but i don't because the maid of honor at my wedding had untreated lyme and wound up partly paralyzed on the left side of her face/body - and she was an actress/director in theatre - from the swelling and lesions it caused)
11/10/09 9:59 (UTC)
I resist leaving comments for people that say, "that sounds like MS," and instead say, "I have had those symptoms from the MS." So, I will just tell you that I get numbness and have been told it is the MS. Among my other legion symptoms.
It definitely sounds like something they should test but, then again, the way to 'test' for MS it to see if you have had two sets of symptoms at different times and in different parts of your body/CNS. There is, as yet, no definitive bloodtest for MS. There is a bloodtest where some people with MS are positive - and a similar test for spinal fluid - not all of us that have MS get a 'positive' result on the lumbar puncture either. Nightmare.
So, how about I just say that I will be here if you need to talk? *hugs*
11/10/09 19:26 (UTC)
11/17/09 0:01 (UTC)
kind of an info dump.
Have you had a brain and/or spinal MRI? when you were in high school, they didn't have the technology they use to diagnose me.
As far as I know, magnetic resonance is the most reliable way to diagnose MS, and the technology is comparatively new. The usual age of onset is in the early thirties but early onset can happen. I recently read an article where tying early onset MS to Epstein-Barr virus. it's a little more complicated than that, having to do with the order of exposure to different diseases (which has to do with hygiene as well).
Another thing that can look like MS is lupus, and Western biomedicine has a tendency to assume that population genetics determine everything, when they don't determine anything, and influence a whole lot less than most people think. With the result that they don't check "white" people for lupus, even though that is a cultural category, not a biological one. The fallacy of using "race" as a basis for medicine as if it were a biological category (rather than a culturally mediated caste) has led medical researchers down more blind alleys than... I don't know I'm not good at metaphors but a lot.
Personally, I have found more and more telling me that if it's autoimmune, environment probably has something to do with it, and environment is not just climate. Environment is increasingly (and I mean increasing over the last 40,000 years at least) cultural; it is what pathogens (and othere non-pathogenic microbes) you are not exposed to because cultural hygiene practices prevent you from being exposed to them, what foods you eat, what supplements you take, immunizations, dental work, who knows?