I know exactly what you mean about the side affects of the mess-tinon. However, when you can't stop taking it, there are options for handling the problems.

I went to a gastro doc when my neuro couldn't stop the side affects. The end result was that I ended up on 10% tincture of opium. I know, OPIUM? i really hesitated at first, but after a couple of very embarrasing incidents, I decided I didn't have a choice. I take 10 drops (about 1/4 tsp) when I go to bed and it controls the problem for about 24 hours. The prescription says you can take 10 drops up to 4 times a day if necessary. For me, the bedtime dose is all I need.

When I first questioned the gastro doc, he told me to take a look at pictures of anyone addicted to opium or any of it's derivitives; they always have a distended stomach and are very constipated because the opium (or morphine, etc) slows down the bowel. And just like mestinon speeds up the GI tract, the opium slows it down. I really wondered about addiction, but they monitor it very closely and I can't get a refill without talking with the doc or nurse and going over my symptoms, how often I'm using it, etc.

I'm like you; I had a thymectomy in 2005 and had about 3 years of pretty good results, However, the last 12-18 months have been really hard and right now, my eyes are being hardest hit (double vision, etc).

Also, like you, I'm a single women who supports myself and really hate the thought of disability so I'll keep doing what I have to do to stay in the game.

Are you taking any immune suppresents? They take a while to get in your system (6-12 months), but they do work for some people. I'm on cellcept, 1,500 mg in the morning and 1,500 mg in the evening and have been since 2000 when I was first diagnosed.

Stick with it and I pray you find a balance that works for you.