-
My heart goes out to all of you who have shared. MG is truly a “snowflake” disease and I have yet to see a carbon copy case. Since I was diagnosed over two years ago, at age 72, I have seen a half dozen neurologists (at great distance since no competent ones were nearby). I am on Soliris infusions every other week. Not one neurologist gave me a similar protocol in terms of medications or menococal boosters. One neurologist insisted that I take a daily antibiotic while on Soliris (I don’t and won’t). Another told me a needed a menococoal booster after two years while a pharmacist told me three. Another told me a thymectomy was useless, especially at this age; another told me to go for it (I did). IMHO, we just have to find a neurologist we are comfortable with and “do the dance.” I’ve always been told I have an “on/off” switch when working. MG is evidently trying to teach me to modulate, but I’m a slow learner. It’s tricky because I also know I need to use it or lose it; I walk two miles a day religiously plus doing home garden work. (Some days better than others in terms of fatigue.) You are not alone; and, evidently, there will be more of us as I recently heard on a televised national health conference that neurological disorders are the next “pandemic,” supplanting the focus on cancer treatment. That’s not meant to comfort anyone except for the hope that more research will go into causes and treatments. Blessings.