Originally Posted by Stellatum

Hi, and welcome. Please feel free to ask questions here. The people here are incredibly helpful.

First, what medicines are you on? We can give you tips about taking different ones, and what to watch out for. I'm guessing you're on Mestinon (pyridostigmine is the generic name). This is very helpful for controlling symptoms, but sometimes the dosage takes a little tweaking. If you find it bothers your stomach, take with food. If you find it makes you twitchy, you may be on too high a dose. If you find it works but wears off too fast, ask your doctor if you can take doses closer together instead of taking more (it does tend to wear off fast). There's a time-release version for people who are bothered by symptoms in the middle of the night--better than getting up to take a pill every three or four hours. One more thing about Mestinon: too much can make you weaker. Just something to be aware of.

Are you on Prednisone, too? Did you just start taking it, or were they giving it to you in the hospital? I ask because you need to be careful in the beginning with this drug. Sometimes it makes myasthenics worse for a bit before it makes them better.

Above all (I don't know if I need to tell you this after what you've just been though!) be careful. Any new symptom, or sudden worsening of symptoms, needs to be taken very seriously. A crisis (as you know) can come on fast, so don't take any chances. Call an ambulance.

Try to learn your triggers. I think all of us find that too much activity brings on symptoms. Any kind of stress is bad (I know, that's a tough one!) Many of us have trouble with heat. Be careful with drugs, like antibiotics--some of them make MG worse. Ask your neurologist before taking anything new. Don't assume your primary doctor will know.

Phew, I know this is a lot at once! Please ask questions here. It's the best way to learn, and we're all eager to help.

Abby