Hi, sfordham. Who diagnosed you with ocular MG? A neurologist? A MG expert?

I hope you don't mind, Mike, but I'd like to clarify what you said about Mestinon.

Our troops got 30 mg. of Mestinon. It DID make them sick. And, in combination with a few other things they were given, some of them became very ill.

Mestinon won't hurt you if you have MG. However, a person with MG can still overdose on it! Finding the right dose can be tricky. Too much can make you worse and too little can, too! Some neuros start off with a lower dose and then increase it, to see how you react to the drug.

Most people do fine on Mestinon. I have no side effects or adverse reactions from it.

If you don't have MG, taking Mestinon can cause symptoms of an overdose of acetylcholine (the neurotransmitter that makes muscles strong). That would include increased muscle weakness, increased salivation, increased GI motility and, therefore, diarrhea, nausea, vomiting, abdominal cramps, sweating, etc. It can also cause increased bronchial secretions or make asthma worse.

In some people, Mestinon can cause asthma, though that's rare.

I completely understand the desire to have "proof" before starting a medication. I needed that, too.

Mestinon kicks in about a half an hour after you take it. Then two hours after that 30 minute point, it wears off. So if you do take it, at least you'll know that it wears off quickly! And you could always start with 15 mg. at first to see how you do.

Mestinon isn't great at helping with more than mild double vision or ptosis (drooping eyelids). It does help a lot with most muscle weakness, but MG is unpredictable and weakness fluctuates.

Is there anything else you'd like to know? People here are great at support and have a LOT to share!!!

BTW, that "denial" thing is normal. Who wants a disease? MG is manageable, but there's much to learn about it.

www.myasthenia.org
www.mdausa.org

There are some drugs that make MG worse. A lack of sleep, hot and cold weather, and a lot of other things can make it worse, such as infections, surgery, and stress.

Annie