Ignorance was bliss
 

Hello Everyone,
I just found this forum and spent the last couple of weeks reading the posts. I'm not sure if I feel better...or worse. All of the little symptoms make sense now. Tripping and choking on nothing, running into walls, not being able to read for more than a few minutes (a real heartbreaker), getting winded too easily, and on and on. Now I can see that these things are all related to MG. Darn!

I think that I've had MG since I was a teen. My mom would make me stay home from school for a few days once in a while. I wasn't sick, just worn out. I love sports and I couldn't figure out why I couldn't do endurance sports. I was very good at sports with short quick intervals, then rest. I played volleyball, tennis and racketball, but I couldn't run or swim long distances. I've never been a shopper, I poop out, and I was told that I had bedroom eyes because my eyes drooped, especially the right one.

I was diagnosed with MG in 1992. At the time I was in my third year of law school, working full time with a husband and two kids. My right eye was almost closed. My eye doctor sent me to an opthamologist who sent me to UCLA where I got a diagnosis of probable MG. Of course I didn't believe it and did not believe it up until recently. I took Mestinon and ephedrine for a while and went into remission for over 15 years.

I started working in a law firm and eventually became a managing partner working very long hours and driving all over California. Three years ago the MG reared it's ugly head. I started to have a very hard time reading and concentrating. I took naps in my car at lunch and went to bed at 7 pm. I gained 30 pounds because I thought that eating would give me energy. I then started to have problems swallowing and I lost that 30 pounds. My pcp told me that I needed to stop working and it took me 8 more months to pull the plug.

I've been off work for a year now. My husband watches me like a hawk to make sure that I don't overdo things, which I still do. I thought I would be feeling better, but I'm not. Things seem to be getting worse. This forum has convinced me to get aggressive with my treatment. Right now I am taking 3 Timespan Mestinons a day. I take a nap every day, have trouble swallowing, breathing and walking. I hate spending so much time sitting down. I am going to take my neuro's suggestion and ask her for Cellcept and IVIG when I see her in May.

Thanks for the info and all of the help on this forum. I haven't told many people about my MG, so it is very helpful to tell my story to people who understand.

Kim

Kim, You say you are going to take your neuros advice and ask her for Cellcept and so on. Who is her? forgive if I missed this somewhere with my eyes that arent doing well. And a quick welcome here.
Annie59

Hi Kim...Welcome!!

I worry that you are courting a crisis when you are already on Mestinon, getting rest and naps, and still experience difficulty with swallowing and breathing. Sounds like between now your May neuro apt. you need to take hubby's advice and take it very easy.

I would be very interested in knowing what you and your neuro decide. I have had the prednisone/Cellcept conversation with my neuro (she initiated). Since I have had no serious issues with breathing or swallowing yet, I have decided against it until/if things deteriorate to a much greater degree. I really appreciated my neuro's offer since so many aren't willing to pursue aggressive treatment with their patients.

Keep in touch - - and I hope you have some really good days scattered in with the not-so-good ones.