Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
when I think back on my history and I see all the missed diagnoses of my MG, I want to change things for the next patient. Does anyone have knowledge of a forum for sharing early indicators in an effort to better educate doctors in MG?
You express an important thought. I don't know of any forum like you describe, especially one that clues doctors in about MG.
What I have seen is during June, MG awareness month, occasional newspaper articles about MG. Maybe what we should do is take it on ourselves to invite a local news reporter to an interview during June to get publicity. Maybe something in it that tells about how difficult it is for early stage MG to be detected.
I was diagnosed when double vision and ptosis were obvious, but I had trouble breathing and other problems for years earlier and did go to the doctor about the problems and got the "you are depressed and need SSRI's" advice. I didn't agree to do that, and so blamed myself for being out of shape because I didn't exercise enough (I couldn't do much).
Hope someone has better advice as this certainly is a problem.
Good Luck
Russ