Did they run a regular EMG or do a Single Fiber EMG? A Single fiber is more sensitive for MG.

A person can have MG and have a negative SFEMG and negative antibody tests.

Which Mayo are you going to, if I might ask? Mayo will probably redo the blood tests and do a SFEMG. That's standard for them to do. You might want to ask for pulmonology testing as well as the chest CT (not an MRI). An MRI is not what they do to look at the thymus, only a CT. Be careful about having iodine contrast because it can make MG worse, if you have it. They can see the thymus just fine without contrast. If they insist on it (you have the right to say NO), then they might try to premedicate you with Benadryl. Benadryl can make MG worse.

With Mayo neurologists, it's best to let them take the lead. If you go in "insisting" that you have MG, then they might thing you want to have it. Seriously! Just make it simple. Tell them your symptoms, when they happen, etc. and then see what they think. I'm not trying to tell you what to do, it's only that I've had way too much experience with Mayo.

Have you been to a neuro-ophthalmologist? You might be able to see one at Mayo too. They can assess any double vision you are having. Does it go away when you close one eye? MGers have "binocular" double vision and it goes away when one eye is closed. Our eye area muscles get weak to varying degrees and, therefore, cannot focus on objects in a synchronistic way!

I can understand not wanting to try Mestinon. If you don't have MG, it could make things worse. If you do get worse before your appt., you need to go to a hospital. If you can't swallow, breathe well or are generally overall weak, you have to go in. You don't want an MG crisis where you can't move or breathe! It's not super common but it does happen.

You need to be off of Mestinon before any testing anyway. Do you know when you'll be seen? Do you have to travel to Mayo? Travel can be very hard on MGers.

I hope that answers some questions. Try to relax! Stress makes MG worse. A lot of people have MG and do just fine, so try not to get too worried about it, okay? Take good care of yourself, like getting enough sleep, and you should be ok. If you do get worse, again, go to the ER. If you're really bad, you cannot drive yourself there! You'd have to dial 911. In the off chance you do have an MG crisis, you don't know how bad it will get or how quickly.

Good luck with your appt. I really hope you get answers soon.

Annie