Kendra, Congrats on the "final" diagnosis. Now you can deal with the management of MG.

The doctor who diagnosed me is an MDA Director and MG Expert. He started me off on a low dose of Mestinon - 15 mg. Why? Because I was sensitive to meds in general. What can happen is that you can have side effects during the first days, sometimes longer, of taking it. Then after a while, your body gets "used to" it and doesn't have them anymore. I had increased saliva for the first couple of days. Since then, I've had absolutely no side effects. I'm currently on 90 -100 mg. every 3 hours, round the clock. So maybe start low and very slowly increase. Of course, run it by your doctor first. I wouldn't give up on Mestinon altogether!!! Maybe even try the syrup, which I take.

Also, sometimes it's not increasing the dose but the frequency that is key. Sometimes taking 60 mg. every four hours or three hours works better. More is not always better!!! Adjusting Mestinon can be a real science. Or art.

I hope you don't have a thymoma! Did they do the striated antibody test? The Acetylcholine modulating test can also indicate a thymoma if it is really high.

Go easy on yourself and your family. It is going to take as long as it takes to get used to having MG. Heck, you just got diagnosed! It took about five years for me to "accept" that I have MG. I doubt I'll every fully accept it. It always takes longer for those without the illness to "get it" or deal with it. You can't truly understand a disease unless you have it. Inform your family and friends as they can handle it. Go easy on them too. They are going to have to adjust to the "new you."

I'm glad you know proof positive what is going on. Since you're sleepy . . . . . . go rest!


Annie