My story is a long one....16 years without answers (I will admit that I had decided to live with my symptoms and not see any more doctors because I never received answers)...
1997 - promximal arm weakness - I was a choir director at that time and had been able to direct entire rehearsals. It got to the point that I could not direct one verse. Doctor diagnosed me with hypothyroidism. Treated and within normal range, but symptoms did not go away.
1998 - discovered that my grandfather who died before I was born had a form of muscular dystrophy. Convinced that was the cause of my symptoms, which included thigh fatigue, upper arm fatigue and chewing fatigue, I went to the Hershey Medical Center and was told I did not have muscular dystrophy. Still not convinced, I had DNA testing done around 2000-2001 and discovered I had one genetic marker but not both for Fascioscapulohumeral dystrophy.
I have seen a neurologist who simply read diagnoses from a book (yes, while sitting in front of me) and could not determine a diagnosis. I saw a physiatrist who did EMG testing and said I was "grossly normal" and maybe had a variant of muscular dystrophy.
Now - my symptoms of thigh fatigue, upper arm fatigue, chewing fatigue, occasionally base of tongue fatigue, slightly droopy eyelids and now vocal cord fatigue are starting to affect me more...at this time my muscles are sore. I hate my elbows to be bent. I have a hard time falling asleep due to discomfort at the end of the day.
I am a speech therapist and was aware of Myasthenia Gravis, but more so when speech becomes dysarthric. My speech does not slur, but in the past 2 years, I have progressive problems with my voice. It will tire and hurt to the point that I can almost lose my voice while singing...but it does come back fairly quickly with rest.
Could I have a form of myasthenia gravis? I want to see a doctor and determine, but I have moved to a fairly remote area (Idaho). How do I find a good doctor who understands myasthenia gravis in all its forms within a 4 hour drive or so? I could go to Salt Lake City, Boise, or here in Idaho Falls...I just hate chasing another avenue and being disappointed with no answers....again! Any thoughts? Thanks!