Debra, Good, I'm glad you had a face to face with a neuro. What the MG experts, whom I have asked about the Mestinon helping "other" diseases, have said is that it may help any "normal" person feel a bit stronger on low doses but it does not improve something like fatigable ptosis if you don't have MG, LEMS or CMS. It can temporarily help ALS but not always. That's why a thorough clinical exam and history (differential) are so key to diagnosing MG. Fatigable weakness is so unique to MG/LEMS/CMS (some of them).

Have you spoken to an endocrinologist about the adenomyosis?

Migraines can have LOTS of causes, including foods. Have you watched your diet and physical conditions closely before having one? MSG is a huge trigger and it is naturally occurring in things like tomatoes and cheese. When my head/neck muscles get weak, I can get a killer headache though it's more of a tension type headache. I used to get migraines but do not anymore after taking out all additives and not having certain foods. I've eaten a whole foods diet since 1997 and it really helps.

Some people can have an inflammatory response to dairy. I should know since I just had to give it up. I was having a cough/inflammatory reaction in my lungs (possibly elsewhere like my GI tract) every single time I even had a bite or drink of anything dairy. Eggs, dairy and soy tend to have inflammatory effects in the body. That can screw up your inner ears!

Some docs think that adenomyosis is an inflammatory response. So I'm wondering . . . have your doctors tested your CPK (creatine phosphokinase)? Any arthritis anywhere? Have they checked your c-reactive protein? Sometimes the "auxiliary" immune system, like c-reactive protein, fibrinogen, erythyrocyte sedimentation rate, etc. can kick in when there is unchecked inflammation or allergy in the body.

Well, your neuro would be wrong about not being off of Pred for the SFEMG. Completely and utterly wrong. I know of more than one person who has had it while on and off. Normal while on it, and abnormal when off. The whole point of having Pred is to suppress the immune system that creates antibodies. It should make someone with MG feel more normal. It skews the SFEMG test results, as does Mestinon, nightshade foods and caffeine. Did they mention being off of any caffeine 48 hours before the testing too?

Have you ever consulted with an endocrinologist? Just curious. I imagine you've had a brain MRI, right?

I hope you get answers soon. That's the worst part, not knowing exactly what is causing you to feel so bad. And end up in the ER not being able to move or breathe! If you get worse, please do go back in. That's more important than any damn test.

Annie