I have just been diagnosed with MG after 14 years of being told that I have a myopathy. When this all started 16 years ago, I had been on statin drugs, and had an elevated CPK which did not resolve after discontinuing the statins. Eventually a muscle biopsy was performed by Mayo Clinic which was reported to be consistent with a form of muscular dystrophy.
All this time I have had episodes (which is not typical of Muscular Dystrophy) of fatigue and muscle weakness involving my jaws, tongue, neck, arms, back, hips and thighs, and double vision. In recent months I started feeling breathless, especially when I use my arms overhead, or bend down or lean over. Recently my neurologist's practice was bought out by the hospital and a new crop of neurologists. With this came a fresh look at my situation, and concern for my newer complaints. More tests, and finally a Repetitive Stim Nerve Conductivity which was abnormal. My labs did not indicate MG. The neurologist felt that I have MG, prescribed Mestinon and also asked me to be seen by the MG guru here in town which is a part of the University of Florida (Shands). He agrees with my neurologist. Since starting the Mestinon, I have felt better, (not all better), and not all the time. It seems that it wears off quickly, and now I am using more that I was initially. I was told about la low dose steroid treatment. Would like to know how others have done with that, and if it is a short term or long term therapy. Something about staying on steroids makes me nervous. I am diabetic, have restless leg syndrome, and neuropathy too. Thanks for reading my story. Kris