Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 06-01-2010, 03:20 PM #3
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jana jana is offline
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Join Date: Apr 2009
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jana jana is offline
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Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
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WHOA, Teresa -- LOL. First thing, MG is NOT a "death sentence". True enough that we don't always lead "normal" lives like some of the literature says. But, I am a pretty optimistic person. I think that most of us ADAPT to our circumstances. We figure out HOW to manage with "the beast". MG usually isn't painful -- so, I tell people all the time that if I HAD to have "something", MG "ain't" so bad.

Now, you said you were negative on the "bloodtest". Did you ONLY have the AChR test? Did you have the MuSK test, too? I ask BECAUSE your journey will be easier and smoother IF you have positive bloodwork. You can STILL have MG with negative bloodwork -- and honestly it sounds like YOU do -- with the positive SFEMG and the ice-pack test -- but, the docs LIKE to see positive bloodwork. Just being honest, here.

BTW, it is unlikely that Mestinon will do anything to your ptosis (drooping eyelid). For some unknown reason, Mestinon doesn't work very well on ocular symptoms.

Welcome to the group!!!
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