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CallaFirestormBW -> RE: New fat poll! Diet and overweight (8/31/2009 10:59:52 AM)
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ORIGINAL: Rule
If I may ask: when did the MS present? At what age / in what year? Any correlation with the smallpox test vaccination, or perhaps with a mild disease that you contracted once?
I started developing overt symptoms in 1983 (though I've had some neuro symptoms for most of my life, including tingling fingers and hands/feet that wouldn't maintain their temperature or would 'fall asleep' for no reason), and was diagnosed in 1985 after an MRI after a fall found suspicious plaques on the spinal chord and in the brain , but I didn't have a major flare until 1996 (11 years after diagnosis). From there, things have progressed steadily, though I am still walking and working -- but I do worry about the time when I won't be able to. My new neurologist thinks that it may not actually BE MS in the classic sense, although I have the plaques and the neuro symptoms. He thinks it is secondary to the immune disorder, and that my body is trying to deal with an old chicken-pox infection by doing -this-... some speculative thing about it being a neuro variant of shingles or something like that. To me, it doesn't much matter -- the symptoms are the same, and they don't have any treatment for -either- form that is more effective than what we're doing now... so it all boils down to the same brew for me.
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I have a background in immunology, and of course I know about several congenital afflictions of the immune system (forgot most of them, though, but I know where to look them up), but this is the first time I heard the term congenital immune dysfunction - and I think the phrase is extremely vague, as it does not say what the particular dysfunction is.
The thing is, I was born in 1962 and diagnosed with "congenital immune dysfunction" in 1965... and they didn't -know- what it was. And unfortunately, our understanding of the immune system, overall, hasn't really improved enough to figure it out yet, apparently (at least, according to my ID doctor). The closest speculation is that it is a variant of hyper-IgE syndrome (Job Syndrome), and that I am exceptionally fortunate that it is mild (as the full-blown hIgE is almost always a death sentence by the early 30s-- I've outlasted that by almost 2 decades). Now that I'm as large as I am, I have to go rounds every time I go into the hospital with an infection, because they NEVER read my chart... so we spend 3-4 days testing me for diabetes or diabetic-related illness... and it isn't until the diabetes tests come back normal over and over again (because if it comes back normal once or twice, their speculation is that it was done wrong, so instead of moving on, certain that anyone my size MUST be diabetic, they proceed to just do the same tests AGAIN!) that anyone will actually LISTEN to me and read my chart... at which point they call in the Infectious Disease specialists and the big-gun antibiotics and antiretrovirals and steroids and do their best to undo 3-4 extra days of stupidity. *shakes my head*
Anyway.... back to work!
DC
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