Hi, Catie. Welcome. I'm sorry you have gone through so much for so long.

If you close one eye, does the double vision go away? That's typical of MG. It's called "binocular" double vision.

These guys have given you some good info. Do you know which antibody tests they did? Have you gotten copies of all the tests? Did they do a Single Fiber EMG? Last question . . . is the neuro an MG expert?

Abby, I hope you don't mind if I add to what you said about CMS. Congenital Myasthenic Syndromes are not a form of MG. They are not autoimmune diseases but genetic mutations that cause either no acetylcholine, too little of it or too much of it. Because of this, immunosuppressants won't help. That's why it's so important to definitively diagnose what is going on before giving patients drugs. Mestinon is used for some CMS but not for the ones where someone has too much acetylcholine.

http://neuromuscular.wustl.edu/synmg.html

Mestinon doesn't last for long. It can take 30 - 60 minutes to kick in and it often only lasts at full strength for two hours. Most people take the tablets. I take the Mestinon syrup.

There's a big learning curve with MG. There are drugs that can make it worse. Being too hot or too cold can too. Stress, infections or anything else hard on the body like surgery can make it worse.

I hope you can get answers. I think that's the worst part - not knowing. Good luck.

Annie