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Shalynn, Well, you know what I think. The thing is that there are only a few diseases that cause FATIGABLE muscle weakness. MG, CMS, LEMS . . . that's about it. You sound like classic MG to me. Sure, it could be one of the other ones. You would have to go to Mayo or UC Davis to be sure about CMS. They are the only two places that do the CMS blood tests or the specialized muscle biopsy (it's not the "regular" one).
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I think the fatigable weakness is what has kept me and at least some of my doctors going back to MG. I think one doctor did check me for LEMS. It's a blood test too, right? That one was negative too. I'm not sure what my next move is going to be as far as having to go too far away for answers. Is it really such a bad thing to have my PCP treat me for MG? I guess there's always the chance that it isn't MG, but I feel as if he will keep a close eye on me to look for any further developments. I'm interested in hearing what my regular neuro thinks about my response to Mestinon.
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Ptosis in MG can be all over the place. My right eyelid is dominant. Both eyelids droop when I'm bad. Have you ever tried the "enhanced ptosis" trick? If only one eyelid is drooping, pull up on the droopy one for about fifteen seconds. Do that in front of a mirror. Does your other eyelid go down and the droop one go up? Do they continue to go back and forth? That's classic MG.
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Thanks for this info. I'll try this the next time my ptosis is acting up. I do have some pics, but I didn't take them to the neuro that I saw last week. It was probably a good thing too because he probably would have just blew them off and said it was my imagination.
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Diagnosing someone with MG is not that hard. Why doctors make it hard is beyond me.
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Of course, we know the answer to that! They want proof and lots of it!!
Thanks for your help!