Sorry, Debra, I haven't been feeling great and I don't always check back when I'm like this.

I have to ask what you mean by "what the mestinon will work on." Mestinon only works at keeping acetylcholinesterase (enzyme) at bay so that acetylcholine can stay in the neuromuscular junction longer. Mestinon is a cholinesterase inhibitor, because it inhibits that enzyme. Caffeine and nightshades are cholinesterase inhibitors too and do the same thing. If you don't understand that, I'll clarify it even more, ok? For example, if you are on a high dose of Mestinon, like 90 mg. like I am, and drink lots of coffee and eat a potato, you may get too much acetylcholine and have symptoms of a cholinergic crisis.

You don't have to stay off of the foods! That "theory" hasn't been proven yet, even though the science behind it is rock solid. A caffeine withdrawal headache is really awful!

http://brain.oxfordjournals.org/cgi/...rt/131/10/2553

Was your doctor testing for that? They may be trying to do a differential diagnosis on you due to the lack of MG antibodies. I can only assume they've tested CPK (creatine phosphokinase). That isn't specific to any one disease.

Glutamic acid/glutamine can make migraines worse. You know, like in monosodium glutamate. That issue is separate from the MG issue.

This is probably the one thing that gets me so mad about doctoring. They don't fully diagnose a patient with MG, then they give the patient drugs because they aren't doing well, then they say they aren't sure they have MG and pull them off of the drugs that helped them. I am by NO MEANS advocating any change in drugs - I can't, I'm not your doctor!!! You have to have a conversation with your doctor about all this.

They should've done an EMG while you were in the hospital. A Single Fiber EMG is the best to do. What if they don't find anything with the EMG? Then you get to be poked and charged twice! It's your decision of what you want to do. Sometimes it is useful to do the regular EMG, where they often do the RNS (repetitive nerve stimulation) along with it.

Plasmapheresis is what they not only do during an MG crisis but it is used as a diagnostic tool when a patient suspected of MG is having obvious muscle fatigability, all clinical signs point to MG and other diseases have been ruled out. This tells me that your doctor is maybe not up on everything MG-related. MG specialists have a deeper understanding of all things MG.

The Congenital Myasthenic Syndromes are a group of literally hundreds of different gene mutations that can cause either too much acetylcholine, not enough or none at all.

I think you need to talk to your doctor. A test can be rescheduled. I know it is important to figure out for sure what is going on with you but you just had a crisis. From what I know of withdrawing from Pred, it has to be longer than a day because the effects of Pred last a long time. The effects of Mestinon have been shown to last anywhere from 4 hours to two weeks (in a study done by Dr. Howard). Mestinon may leave your body (be excreted) within a matter of hours, as would Pred, but if a drug is still having an effect on your body and, therefore, your disease, then it would affect the damn test as well. Don't these doctors take time to think this stuff through?

Susan, that is why they need to do the EMG or SFEMG without drugs. She won't get an accurate result otherwise. And, yes, it is dumb to do it right now when she is still recovering. But the longer you stay on Pred, the more your body gets "hooked" on it and the harder it is to get off of it!!!

I hate "the cart before the horse" doctoring.

Debra, You have to go by how you are feeling. If you think it's a danger to your health by withdrawing from drugs right now, then only you and your docs can make that call. If you think it is an acceptable risk, again, only you can decide that. Sometimes they put patients in the hospital to withdraw, so they can keep an eye on your stats and give you supportive care like oxygen.

I hope that answers your questions! And I hope you will get the answers you really need soon.

Annie