Hi, Navario. So the neurologist believes you have MG. Then you probably do.

Not the coke, but the caffeine. There are no studies showing that caffeine can affect EMGS like Mestinon. But the science is technically sound.

I am not a doctor, so take what I say in that context. I do not think that Prednisone should be a first line drug for MG. But that's the algorithm they have. Mestinon is a helper drug. So the first drug they offer to suppress the immune system is Prednisone.

Steroids shut off the adrenals. That leaves a person open to adrenal issues if they become emotionally or physically stressed. Usually the adrenal glands adapt to those changes. A constant dose of Prednisone does not. The body becomes used to a particular dose as well. And when patients try to go off of Pred, no matter the dose they are on, it is near to impossible. They can also have signs of an adrenal crisis, which can be life-threateing and can make MG worse. MG can also become temporarily worse after first starting the drug.

Prednisone also causes a LOT of side effects and can cause diabetes. Sure, other immunosuppressants can also cause a risk of cancer, anemia, increase risk of infections, and lots of other issues. But no other drug is like steroids in what havoc it can wreak on the body.

A CT can't show a thymoma for sure. If you take immunosuppressants, that can increase the cancer risk.

Mestinon helps. But if you increase your activity, your muscles demand more acetylcholine. Mestinon might not be able to keep up with that demand. Our muscle receptors only allow for just so much acetylcholine to get through.

Mestinon kicks in after about 30 minutes. Two hours after that point, it wears off. How much are you taking and how often?

Only you can decide what kind of treatment option works for you. If you are wary of the diagnosis, Dr. Eymard is a great doctor for a 2nd opinion.

I really hope you will discuss more with your neuro, or another one. I wish I could do more to help you!


Annie