No, you can't give up. Sorry, it's not allowed.

Okay, so temporarily hole up and recover. I still have a "hole" in my forehead from a SFEMG from six years ago. You can bruise too, so if they show up, it's normal.

Have you tried cold washcloths or a cold compress? That should help with the inflammation. It's very odd though how quickly you had an inflammatory reaction. Have you seen a rheumatologist to be thoroughly evaluated for an "itis" disease?

You cannot rule out MG with a negative SFEMG. Do you mind listing simply what the evidence is so far?

I think you may need a muscle biopsy. They haven't done one, right? If your muscle fibers are small, that should be a big clue to the doctor. Duh.

Don't despair. A good doctor will realize that MG is clinically diagnosed and backed up with testing. A negative test doesn't prove anything!!! A negative doesn't prove a positive. Ask anyone in science if that's how things are proven. NOT!!!!

I've been where you are now and it's not fun. It's completely devastating really. To know you are sick and to not have definitive evidence can make you feel nuts. But diagnosing is not always that easy. So I hope you will hang in there and realize that MG or CMS or LEMS are not always as cut and dry as doctors want to think they are.

Well-being and quality of life is something you are in control of! And it involves a lot more than what doctors can give you or take away from you. Yes, you need their help right now but don't let them "control" your life. I wish I could help you and others like you get the best care possible. It really tears me up. You'll be okay!


Annie