All,

Greetings! I was finally formally diagnosed this morning. Ocular MG. Positive SFEMG. Positive Tensilon Test. Positive response to Mestinon. Seronegative.

My neuro ophthalmologist said that my current symptoms (double vision and eyelid) are mild and responsive to Mestinon so no change in my current treatment plan.

He mentioned that there has been anecdotal studies that show that those that take prednisone with ocular only MG have a reduced risk of getting generalized MG. He said given it was a historical study, they are working on funding to drive this as a large study soon to prove one way or another.

I have a few questions for this group around this:

#1) Given my symptoms are minor and responded to Mestinon is there any reason for me to get a second opinion about other treatment options to prevent progression to generalized?

#2) How often and how to each of you engage with your PCP now that you are diagnosed? Do those that have ocular only work with a general neurologist or an ophthalmologist only?

#3) He stated that I could continue all my activities given it was showing ocular only? Any thoughts on that? I know the risk of a crisis but wondering if it could pop out of the blue or if I should be comfortable getting back in to a running routine for example.

#4) AnnieB3 around? Or anyone else with thoughts on care in MN? Is it worth a second discussion at Mayo? Welcome any feedback.

Thanks again to all for reading.