Originally Posted by Needananswer

All-

I apologize in advance as I suspect this question may be regularly asked, but I'm desperate for help.

I am seronegative for all antibodies related to MG including Musk and Lems ( I tested positive just barely for the striated antibody but the dr told me that was insignificant).
I have had 2 single fiber EMGs and both were unremarkable.
My PFTs were normal.
CT of chest was normal.

I do have celiac diseasee, pernicious anemia and a history of graves disease (my Thyroid has normalized and I am off all meds for that which is great though I do have 2 small nodules).

My left eye has been very droopy for over a year and recently became much worse. My right eye is also droopy though not nearly as bad as the left. EVERYONE comments on the change in my appearance. I was a successful model for many years and my eyes were something that landed me regularly in magazines and on national billboards. I look vastly different now ( like I am on drugs or severely exhausted/depressed). I also experience dble vision very regularly.

My speech becomes very slurred fairly regularly and, less frequently, my breathing is a little labored.

I am exhausted. I am an avid athlete and yet I'm completely exhausted all the time and recently filed for disabilty from the job I love. I feel so sick!!

I have seen 2 neuros for an opinion. One, a leading MG expert, totally dismissed MG based on the fact that my bloodwork/nerve studies were clean. Despite ptosis, he said my eye looked "fine" which i assure you it does not.

The other started me on very small dose of mestinon (30mg 2xday) which did nothing. He then upped it to 30mg 3x day and I feel a wonderful and significant improvement but it runs out quickly and symptoms come bk after just 3 hours.

My questions are:

Is this MG despite the normal bloodwork and nerve studies and opinion from MG spec at leading institution?
Does a good response to the mestinon confirm a dx?
Should I concurrently be on prednisone to try and get at the underlying disease?

My deepest appreciation for any advice and apologies if you have fielded this question before. My dble vision is bad enuf that looking thru the threads is too much for me at the moment.

Many thanks,
Needananswer