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Old 07-04-2012, 09:17 AM
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limpy limpy is offline
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Join Date: May 2012
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limpy limpy is offline
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Join Date: May 2012
Posts: 224
10 yr Member
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Many times, especially in the case of rare diseases, we have to be our own health advocate. Glad you figured it out for her.
Good luck with whatever treatment plan you decide on.
Quote:
Originally Posted by BackwardPawn View Post
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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