[GrandkidsMim]

My name is Mim. I was diagnosed with MG about 5 years ago but at the time only had droopy eye and double vision. I assumed that I would be ocular for a time and took Mestinon for a while. Had a lot of difficulty finding a good Neuro because my insurance only had 2 choices. One told my primary care doc that he didn't want to treat me because I couldn't be cured! LOL, glad I don't have to see him. Anyway, I ended up seeing a rheumotologist (sp?) who didn't know much about MG but while I was there went online and found out some basics and called a friend doc who was a neuro. He wouldn't let me leave the office (not in a bad way) until I started taking prednisone. So, there I started. I was up to 30 mg. of prednisone for about 2 years. Everything seemed to be going okay until last June when I collapsed and had breathing difficulty. Ended up in the hospital twice where they started me on IVIG and got a GREAT neuro along with the new procedure and Immuran. I continue to receive IVIGs evey other week although some weeks are still very difficult. I am also seeing a research neuro at UCLA specializing in MG. So I have a great local neuro doc and a great research doc.

This is NOT a fun ride. I'm dealing mostly with not being able to read my own body anymore. I am 62 years old and often I can't tell if what I'm feeling is because I'm getting older or if it is MG.

I know I'm getting good care for my MG but I get VERY frustrated with my body.

Thanks to all who began this and continue to host this forum