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

Hello
you do have "PM capabilities".
Just got to your User CP and scroll down the left menu there till you find "Send Message"

You can also PM any other member by going to their profile page where you will see the option to send a private message or post a visitor message on their page (please note visitor messages are not private)
Under Every member's user name on their posts there is also a drop down menu that allows you to PM them

Trihead, I don't want to sound "snarky" -- but, IF you are doing "ok" right now, do you REALLY want to risk becoming a DIABETIC, or getting OSTEOPOROSIS, or doing some OTHER awful harm to your body -- THANK you MR. Prednisone -- just on the "slight" chance of escaping generalized MG? (With MG, IMHO either the disorder hurts you OR the drugs hurt you. )

I've done quite a bit of research (although probably not as much as your neuro-opth) -- and I've never heard of Pred. preventing Ocular from going into generalized. Probably why your doc saying a STUDY needs to be conducted.

It could be YEARS before you go generalized -- or you may stay ocular FOREVER. As Annie said, you just never know..........

BTW, a YEAR between appointments??? YIKES!! I mean, YIKES!!!!!!! (Even WITH the opportunity for you to call him -- I mean, you are the patient -- you don't know WHAT to "look" for!!)

Thanks Chemar. I may be confused but not finding it. I attached what I am seeing. Maybe I am missing it?

Attached Images

	5-11-2012 10-23-28 AM.jpg (12.3 KB, 203 views)
	5-11-2012 10-24-54 AM.jpg (36.8 KB, 211 views)

take another look please as you really should be seeing it.

Thanks Chemar. Now it pops up.

Much appreciated,
TriHead

ps you may need to "clear cache" as you may be loading an older cached page version