Originally Posted by Graced

Hi,

Thank you for answering. I was dxd by Athena Diagnostics as having Musk + MG in Sept. 2010. I didn't realize there was more than one kind of Musk +. The more I learn about this disease, the more amazed I am at its complexity. I have a wonderful Neuro and I am so blessed at how well I am doing. From the beginning I only had the bulbar symptoms. My arms and legs have been and are fine--thank the Lord. Right now it's my eyes that are giving me the most problem. I was recently dxd with dry eyes--just what I need! I have had bouts with double vision but thankfully they haven't lasted for a long time. I have been on 30 mg of prednisone for quite some time. When I went outdoors and there had been a temp drop to 7 deg. below 0--I got double vision. I was fine before I went outdoors--thought to myself how fortunate I was that I felt pretty much like my old self. (I live in Maine and I would love to find somebody with Musk + MG in Maine to talk to. I think I'm the only one!) My Neuro doubled my pred. fom 30 to 60 mg a day for 4 days--and my double vision went away on the 4th day. My eyes are light sensitive, get bloodshot if I'm on the computer too much and I have blood vessels that burst in them. Have had a history of burst blood vessels for years. My Neuro would have tried reducing my Pred. my last appt in March but I have a colonoscopy coming up in May and the last time we tried reducing my pred. I got double vision so I don't want any changes until after my colonoscopy. Then I'm sure he will try to reduce it. I'm currently taking 2000 mg of Cellcept a day and 60 mg of a generic for Mestinon 3 x a day. I am working full time. I get tired out but am grateful I can work. I need to for the medical insurance. One of the hardest things to all this is the difficulty of trying to plan what to do. Should I replace my car--things like that. If I have to stop working, I wouldn't replace it but if I knew I could continue working--now would be the time. No answers to it.

I've found such support on another site that has been such a blessing to me. There's a bond with people who you know understand without words about it all. I can see this site is the same. I need it that's for sure.

Thanks again for reaching out to me. Can't wait to see what happens if I actually get this sent right... Ho

Grace