:Wave-Hello: New to this Forum for MG
 

:Wave-Hello: 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 :Tip-Hat:

Hello & Welcome!!
 

Hi, I am new to this site. I just read your note, and I too am the same age. I find that I have not been able to get around because of the weakness and that in turn is causing my muscles to atrophy. Seems to happen faster now because of age. I know I get fatigued a lot and need a nap in the afternoon. Seems like trying to use the muscles makes me more tired...but have to keep on trying. .....I live in an active community and the people here are same age doing circles around me. Tough place to live....

Nice to meet you!!
 

ocalachris,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.:smileypray:

:hug: