Hi, KES. Welcome to the world of MG.
Mestinon kicks in about a half an hour after you take it. 2-1/2 after you take it, it wears off. So there's about two good hours of use of it.
So, my question is, when you had the intense muscle twitches when you went to bed, was Mestinon in your system? In other words, what time had you taken it that night? If it wasn't in your system, then your MG just might've been worse due to how MG can get worse towards the end of the day.
That's weird to have such a strong reaction to Mestinon if you have MG. Twitches are a fairly normal side effect for the first doses, but not increased weakness. See the Mestinon PDF below.
Did you have any digestive issues with the drug?
How were you diagnosed? Did you have positive antibodies? A Single Fiber EMG?
I think you should talk to your neurologist again. You might need a different treatment. Are you sensitive to any other medications?
I think you should start a journal and write down the exact time you took Mestinon, the dose you took, and at exactly what time you had any reactions. That will help the doctor, too.
How are you now? Do you have shortness of breath? Do you still have swallowing issues?
How much did the doctor tell you about MG? You can read up on it at either of these two sites.
www.myasthenia.org
www.mdausa.org
There's a lot to know about MG. Some drugs can make MG worse. A lack of sleep, infections, surgery, extremes of heat and cold (makes MG much worse), and many other things can make MG worse (anything that is a stress on the body).
Try not to "panic" about any symptoms (that'll only make it worse).
If you become so bad that you can't swallow well, are really short of breath, or you are really weak in general, that's the time to dial 911. In case your doctor didn't tell you, some MGers can have a "myasthenic crisis," where they need more help right away. We can tank pretty quickly and severely at that point (again, don't panic!), and need help right away.
Anything else we can help you with? It's hard to deal with a new diagnosis. Give yourself some time to adjust. The good news is that you can manage MG with rest and treatments.
Ask as many questions as you need to! People here are great and have a lot of experience and support to offer!
Annie