Sandy, How close are you to St. Petersburg? There is a doctor called Dr. Allan Weiss who is an MDA Director and probably one of the best MG experts around. His number is 727-820-7701. I highly recommend him.

You could go see him for a diagnosis and then continue getting management from the other neuro.

You could still see a neuro-ophthalmologist, to have additional information.

How much sublingual B12 are you taking? You will probably need a lot more in the beginning, like two 5 mg. tablets twice a day. Your body has a lot of healing to do! It can take as long to heal as you had the deficiency.

I had a severe B12 deficiency back in 1997-1999. I am now on a maintenance dose of 5 mg. twice a day, though sometimes I take more.

The problem is . . . did anyone figure out what the CAUSE of your deficiency was? If not, then doctoring is not finished. Did anyone check you for parietal cell or intrinsic factor antibodies (for pernicious anemia)? The common causes are that, celiac disease and a lack of stomach acid. Has anyone checked you for celiac?

BTW, my "headaches" from my B12 deficiency went away after a few months. It all depends upon what is causing your migraines. It would be worthwhile to keep a diary to see what foods or activities might be affecting them.

Also, I had MG before I had a B12 deficiency. When the B12 deficiency was made somewhat better, I still had symptoms of weakness and shortness of breath. Sometimes doctors think that only one thing could be going on with a patient at once. That's so not true!

MG is not ruled out. And since beta blockers can make MG worse, that should've been a big clue to your neuro!

I'm sorry you don't have a diagnosis yet. Please get an evaluation, if you can, from Dr. Weiss. They do have MDA clinic days, which might be free. So call and talk it over with them. I hope you'll get some help soon, whatever is going on.

Annie