Well, I'll bet you stumped the docs by having a positive SFEMG yet a negative antibody test.
"Congrats" on knowing what's going on. That antibody test might change if MG becomes generalized.
So, do you want an MG expert (there aren't a lot of them) or a nice neuro willing to learn? Again, you'll have to let me know what part of town you want to see one in! I'll PM you names once you tell me. Did the N-O diagnose you or did you see an MG expert too?
1 and 4. If your insurance allows for it, a 2nd opinion at Mayo couldn't hurt. Dr. Harper is usually the neuro people are referred to. What Mayo does, however, is often redo all of the tests because, well, they're Mayo. They often don't trust other docs to do their jobs well!
There's an alogrithm of treatment many neuros follow for MG. Sometimes they tend to get more aggressive with male, ocular MG patients. Prednisone is often tried after the initial Mestinon. That comes with some MAJOR side effects and should be thoroughly researched before you get hooked on it. Pred is very hard to come off of. IVIG is expensive and can do a number on your veins after awhile; though you can get a port. Plasmapheresis is often used as a means of getting an MGer out of an "MG crisis" but has been used as treatment on some "brittle" MGers or other "subtypes" of MG. Immunosuppression (besides Pred) is often what they do if MG is getting worse but those drugs don't come without problems either. There are more drastic treatments (stem cell) but you have time to learn about all of them.
Have you started the Mestinon? What dose and frequency? Is it helping?
3. So, now that you know you have MG, you should know that if you push it, it will push back. You "might" be only ocular MG right now but that does not mean it won't progress. What muscle(s) did they do the SFEMG on? Some studies have shown that even ocular only MG patients have a positive SFEMG on muscles other than the facial ones.
As far as continuing activities, you'll have to gauge how you are doing on a daily basis! MG can be managed well by alternating activity with rest, though that isn't always enough. Don't get overheated because that can make MG exponentially worse. And when you run, you'll get overheated. I know that MN is awesome for running outside but you'd better have water and a cell phone with you! And maybe someone to run with, just in case.
Very few people who have MG remain as ocular only. What can happen in the first year of being diagnosed with MG is that a person may not fully realize how dangerous this disease can be and might push themselves too hard. MG can go from ocular to generalized quickly and you might find yourself in an MG crisis, where you can't breathe, move or swallow well. I'm not saying that to scare you but to let you know the magnitude of the disease you're dealing with.
Can MG progression be stopped if treated early and aggressively? I don't have a good answer for that. MG is unpredictable. And so much depends on each individual case. MG is not the same for everyone.
2. I work with a neurologist AND a pulmonologist. I keep my internist in the loop of how I'm doing but they are NOT my primary MG doctor! MG is an odd little disease and you need someone who "gets" it. It might be a good idea to get a pulmonologist to do a baseline set of breathing tests right now. Then, if things do progress, they'll know how relatively worse you get. They need to do MIP and MEP too, which are specific for a neuromuscular disease. Again, depending upon where you are, I can point you in the direction of a good pulmy too.
If you ever go into a crisis, neurologists and pulmonologists work together in a hospital setting. If I am getting worse, I can get PFT's (pulmonary function tests) done right away. I have standing orders for them. It is much better to catch MG before it gets too bad! The worse you get, the longer it can take to recover/improve.
Did they do a chest CT? That is often done to see if you have a tumor of the thymus. Some MGers do, most don't. Some have a hyperplastic thymus, which means that it's larger than it should be. A thymectomy is sometimes done early on in the disease to see if it helps bring about remission. The studies are really not that great yet on success rates.
The "historical studies" he's referring to are old. You can head over to the medical library at the U of MN and read them! I did.
MG can be difficult to live with but it's not impossible. I'm truly sorry that you have to have it. I think it's so hard to live with because it's so variable and can make planning your days harder.
If I can help more, please let me know. These guys have had more meds than I have (can't do more) and can let you know the details of them. There are many great posts here to read up on. I hope you stay ocular!