Not sure where to post my introduction -- but hello to all. I received a diagnosis a few months ago after a lot of negative testing. I was beginning to think no one understood how horribly tired I was. Then at last I had a SFEMG and it was conclusive -- all the things that were going wrong for me were most likely due to to MG.
I had been having lots of trouble with double vision, three times had prisms added to my prescription. When my eyes went double another time I was sent to a pediatric opthamologist and he did strabismus surgery and it has helped a lot. I still get some double vision, but at least now I can drive.
I had complained of fatigue, trouble swallowing, shortness of breath and while coping with the eyes I saw a cardiologist, neurologist, pulmonologist -- you know how that goes.
Finally the second pulmonologist got me on a cpap machine, which made sleeping possible for me again, but still was struggling with shortness of breath. That's when pulmonologist #2 sent me to neurologist # 2 and we finally got the mystery solved.
Honestly the day we drove to the SFEMG test I told my husband, this is the very last test I am going to do. If they don't find something, I am giving up and just going to -- what, I don't know, but do something that didn't involve embarrassing doctor visits. But as it turned out, the last place you look, you find the answer. 🙄
I am still not in a stable state yet, trying cell cept, Mestinon, and not doing to well with the breathing muscles. I don't know what the future brings, I am pretty scared to be honest. First I was sad, now I am feeling worried about the future.
So enough about me. Any advice is certainly welcome.