A continuation of my journey with Myasthenia Gravis: Because I do NOT have a droopy eyelid, some docs are suspicious of my MG diagnosis. After about a year of care, my case became too complicated for my general neuro -- he sent me to a teaching hospital several hours away. I was assigned to a third year resident -- and at each visit, I saw him AND whatever teaching neurologist he was assigned to during that particular rotation. Well, the FIRST thing that THEY did was MORE bloodwork. They did NOT believe my original AChR test results. OK -- I am not afraid of needles -- I used to give donate blood regularly -- and I gave myself allergy shots in my thighs for years. Guess what?? The blood tests were POSITIVE again!!! Frustration. They wanted me to take steroids. I can't -- I have steroid psychosis -- I become suicidal. They wanted me to take Cellcept -- no way -- I have family members with skin cancer and lymphoma. I got tired of arguing and driving so far.
Someone contacted my sister about an MG/MDA specialist who is only about an hour and a half from me. It took a year to get an appointment -- and after taking one look at me, he wanted MORE bloodwork -- LOL. Ok -- again, POSITIVE. But, this is MY FAVORITE doc. He understands me -- and works with me -- and knows SOOOO much about MG -- and he has a sense of HUMOR -- he is a keeper. I still see my general neuro, too -- I like having a "team".