This is super helpful—thank you!

I live in Arizona, too. Phoenix area. The hot months really drag me down, but I spend as much time as possible in the air conditioning.

My job can vary from active to sedentary. I really fell off when I started presenting symptoms: ptosis, difficulty with swallowing, weakness, then unsteady gait. My employer asked me to go onto the Disability program (union job with a big company) until I got diagnosis, about 5 weeks. After spending a week in the hospital getting plasmapharesis, I spent another two weeks gaining my strength and co-ordination back.

I had to have a meeting with management to get the OK to go back, and have been working full time plus necessary overtime since. I've done 50 to 60 hour weeks regularly. The weekends usually involve a lot of sleeping.

I'm not in very good physical shape, rather overweight, but I seem to do all right. I need to work as much as I can to make the bills, so I do what I have to.

Arizona Chapter of the Myasthenia Gravis Foundation

They're inactive until September, but there are phone numbers and e-mail addresses.

If you can make it to either Phoenix or Tucson meetings, there may be some help with pointing you toward resources.

I guess I'm one of the fortunate ones that can still work. I was diagnosed 3 or 4years ago right after Thanksgiving. I had severe ptosis of the right eye. It was brought on about a week after getting a flu shot and taking antibiotics for a cough and sinus infections that I had for 2 months so I figure one of them triggered my MG. I hit the mestinon hard for about 4 months before my ptosis gradually cleared up and I have been mostly in remission since. I have been mestinon free for about 2 years with the exception of when I start feeling off like last night when my breathing (Throat tightened up) made it hard for me to sleep after driving from Boise to Salt Lake and then back to Boise in 13 hours for work. I quit seeing the neuro after she said I was misdiagnosed. She got my labs from the previous neuro and she did did a 180 with my labs in hand. I quit seeing her but will need to go back if I need anymore refills of mestinon. I am always tired in the evening though and my muscles are always sore. I have heard that muscle weakness doesn't mean muscle soreness so i guess I can't put that one on MG.

I can't, and still struggling to accept that.