Thanks for the response Annie. Moderators: would it be possible for me to get PM capabilities so I can PM directly rather than boring everyone else with my details .

1. I have been on 60mg 4xday of Mestinon and it has significantly helped. Other than being cautious (and anxious) about the disease spreading and avoiding strenuous workouts, I have continued to live and work as I did before.

2. The N-O diagnosed me directly so I have not seen a Neurologist. He seemed to know quite a bit about Ocular MG but am concerned about his overall expertise in the treatment.

3. He did order a chest CT scan to check my thymus gland so I'll know more early next week (took the test yesterday morning).

4. He was unfamiliar with time released Mestinon but was willing to prescribe. That is part of my concern is I would like to see a Neurologist who can help me regulate my mestinon. I continue to be fairly twitchy (especially after my first dose in the morning). My N-O said that based on my mild SFEMG results and my response to Mestinon, that he would see me in a year or to call if symptoms get worse in my eyes or he'll refer to a Neurologist if the symptoms expand.

5. I live in the SW suburbs of the Twin Cities but am willing to drive as needed. I would love to get a neurologist who has experience in MG, can help me regulate my mestinon as appropriate and can provide a second opinion on whether additional medication at this time would be appropriate. If not, I'm living very well now but would like to know if there is anything else I can (or shouldn't) be doing to limit risk of getting worse. So any suggestions in the Twin Cities of Neurologists with a history of treating patients with MG would be great.

6. I continue to debate the Mayo option. It is 1.5 hour drive but I could swing it. It is out of network so I certainly can't afford to repeat all of the tests done to date. I may be able to swing a single specialist visit but if there are good neurologists up here, I'd like to find someone to be my primary point of contact going forward.

Thanks again for everyone's support. As the title suggests, I am going to focus on gaining an understanding of treatments and recommendations on how to prevent ocular MG from moving to generalized. Many of you have been down this road a dozen times I am sure and appreciate your advice. I certainly will continue to share my results and any other information I find on this topic.

Are there any other ocular MG patients out there that were immediately prescribed something other than Mestinon? How did you respond? Any Minnesota MGers with suggestions for neurologists or support groups?

Thank you all,
TriHead