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Old 07-03-2012, 11:56 PM
BackwardPawn BackwardPawn is offline
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Join Date: Apr 2011
Posts: 211
10 yr Member
BackwardPawn BackwardPawn is offline
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Join Date: Apr 2011
Posts: 211
10 yr Member
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Quote:
Originally Posted by limpy View Post
Glad your doctor got back in touch with you and diagnosed you. That is half the battle. As for any info, sorry, I can't help, but hope some comes along and helps you with more info for you.
She was actually pretty surprised that I figured out this diagnosis. She's been looking for autoimmune/arthritic type conditions that would cause tight muscles as a symptom since she's never believed MG was my only condition--I went way down hill when my last neuro took me off all muscle relaxants after finding the MG. She originally put me back on them to a limited extent. Now she's increased the dosages quite a bit.

I came across SPS while doing some research on muscle conditions and asked her about it. She said it fits so she'd run the antibody test, but its pretty rare (I think fewer than one in a million). Only problem now is that the disease is so rare, no one has developed a treatment specifically for it like with Mestinon. The treatment options seem to be high doses of Klonopin or Valium to replace the missing GABA transmitters and if that doesn't work, then increase the dose.

The silver lining here is that a few case studies have shown removing the thymus gland can improve Stiff Person symptoms, so I'm keeping my fingers crossed that that helps. So far they've only done it in cases where there's a thymoma or the person also had MG, so its not like there's huge research pool to draw from, but the results look promising. The MG may end up being a blessing in disguise.
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