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Old 12-12-2007, 11:45 AM
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MaracaSalesman MaracaSalesman is offline
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Join Date: Dec 2007
Location: Where the 40'N parallel and the US-31 meridian meet
Posts: 23
15 yr Member
MaracaSalesman MaracaSalesman is offline
Junior Member
MaracaSalesman's Avatar
 
Join Date: Dec 2007
Location: Where the 40'N parallel and the US-31 meridian meet
Posts: 23
15 yr Member
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Hi color --

Thank you very much for your input. My walking is about half the time unbalanced (disability correlating very well with fever temperature and/or time of day/general fatigue). I do have to exercise care, and the act of going down stairs is often my mortal enemy (hanging on to the banister for dear life to avoid a fall).

And the progression... ugh. First came in attacks (2005), then in 12/2006 began a slow, steady deterioration... all autoimmune signs specific for MS were checked and were negative.

Speech articulation is fine except for an attack of dysarthria in 2005... but my pure verbal abilities went downhill and then plateaued early this year (2007).

We are trying to check out autoimmune conditions, but my blood panels are pointing the opposite direction from autoimmune stuff and I had two VERY negative reactions to corticosteroids (given for other reasons) the past year. Corticosteroid apparently = attack city, especially on the GI.

Though, with the Marfan's disease, as you're implying I think, there could be a system-wide issue that suddenly popped up (just as an infection can sit in you for years and then suddenly get at you). There are the mixed connective tissue disorders (which can on occasion have 'marfanoid' physical features along with ataxia and other neuro signs.

Genetically, I was tested for MELAS (a mitochondrial syndrome resulting in high blood lactic acid levels, resulting in multiple small strokes), and that one came out negative.

We checked for hepatic encephalopathy, but my liver's of normal size and the 'big three' enzymes are well within reference ranges. Actually, that's a bit disturbing, given that I'm on 7+ medications.

In any event, I'm still thinking infectious agent for some reason... maybe it's because the issues started in my peripheral nerves, and then creeped into my brain (a perineural invasion, if you will). To my knowledge, this is only seen in infectious diseases and cancers. However, I suppose it is theoretically possible for an autoimmune disorder to start peripherally and then enter into the CNS.

Once again, thanks for the help. I'm seeing my IDdoc a week from now, and he's out of options, and all we're going to do is discuss are external referral, and I now have one to consider.
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*Sorry if I take on the order of weeks to reply to posts or messages. I have verbal difficulties now and it's hard to write.*

Neuro issues: Peripheral (1999-) and brain (2002-) neuropathies w/parkinsonian syndrome, chronic infection w/fever (2001-, fevers became daily in 2006), major depression (1993-), neuropsychiatric bipolar disorder (2005-)

Other: Marfan-like disorder (congenital), VSD (congenital, fixed 1984), Existence (1983-)

Last edited by MaracaSalesman; 12-12-2007 at 11:47 AM. Reason: re-worded incomprehensible sentence
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