Hi Kathie
I am so sorry this is happening to you too. I do have a large teaching hospital about 2 hours away. I do see the specialist there who are fairly knowledgeable. But I am not at all a typical case and despite having had a positive Achr once and having an enlarged thymus, which I had removed through surgery, they like to tell me that I do not have MG. I have had negative tests on all other antibodies except the one time, and all emgs are negative. I did have a positive tensilon test this is how I came about the original diagnosis.
Anyways I just do not know what to do. I am definitely still very weak and fatigued. Especially my diaphragm.