Hi, N8SWife. Welcome.

MG rarely stays ocular. There have been studies that show even in those patients who doctors "think" have only ocular MG, both a SFEMG and muscle biopsies of other muscles have been positive for MG.

Do you have any other symptoms that you have or haven't noticed? It's sort of funny but a person can become weaker slowly and not notice the difference until they do something like exercise or walk up a bunch of stairs.

How is your breathing? Any weak muscles around the head area? MG is known as a "head and down" disease. Like Guillain-Barre often goes the opposite way, feet and up. Weird, eh?

It might help to write down any symptoms, even small ones. Really pay attention to how you feel when you do things. Look at your face in the morning (or take photos) and then again after you do something or at the end of the day. When I'm bad, my entire face droops, like I need a facelift.

MG is manageable, if you have it. There has to be a lot of common sense in order to deal with it, which involves alternating activity with rest. And drugs.

Sometimes the antibody tests are not positive right away. They (Mayo) often recommend redoing the test in six months. Have you had the MuSK done?

I hope you get answers soon. It sounds like you have good doctors who are trying to rule other things out. It's hard to be patient while getting diagnosed. You want to be absolutely certain you have MG before you get drugs thrown at you. Why? Because if you are on drugs, like immunosuppressants, and then they doubt your diagnosis, they may want you to go off of them to retest you!

Good luck and keep asking questions.

Annie