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


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Old 12-09-2013, 08:11 PM #14
strizzlow20 strizzlow20 is offline
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Join Date: Jan 2009
Posts: 140
15 yr Member
strizzlow20 strizzlow20 is offline
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Join Date: Jan 2009
Posts: 140
15 yr Member
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Quote:
Originally Posted by matsonme View Post
It sounds like ocular Myasthenia, no?
Mayo Clinic neuroopthalmologists and the MG specialist said no way. 2 other eye doctors and 3 neuros total said no. It's present when one eye is closed too which wouldn't be the case with Myasthenia Gravis according to them. Whatever is happening is bilateral though. I am now having weakness in my feet to my shins, elbows to hands, and my face and jaw muscles at times. Me feet feel like lead and so do my hands at time. I'm getting twitching as well, especially at the bottom of both eyes and not the eyelids. Some other members agree with you on here, but sensory issues, balance, and the vision issues according to the physicians point away from MG. They tested all of the different antibody tests at Mayo. Their range for the binding antibody is 0-.02. I tested at a .14, 7 times over the high end of the normal range. We're looking at different possibilities such as MS, although all imaging has been clean, including an EMG and single fiber EMG. One neuro said I don't have MG because the single fiber EMG was negative. She said gluten was my problem lol. I tried it, and same weakness. Mestinon hasn't been very effective and I do not feel a ton better when I first wake up. My legs will be fine, but within 45 seconds of standing they have an internal tremble and weakness that is hard to describe. Thanks for the reply!
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