Sorry about my delay in getting back here. I do appreciate all of your help.
Poetist~I'm sorry about your reaction to Mestinon; that must have been scary! I'm glad you can tolerate it now. I know I need to really try hard and stick it out with this because I do think it is helping me some even at this low dose.
Tresa~ I'm sorry you had a hard time with Mestinon at first too. It sounds like you have a good schedule worked out for yourself. I have been taking 15 mg three times a day. I want to go up to 30 mg for one dose a week until I'm up to 90mg total per day, then I'll ramp up to a higher dose. It helps to see what others have done. I'm wondering if the 15 mg dose can really be helping me at all? What do you think? Oh, where is the chat room?Thanks for your input.
AnnieB3~I can really see how several different things can affect me, each stressor adding another layer causing me to get closer to a crash. Talking does wear me out, having visitors can wear me out. People, of course, don't really get this. I sort of feel like I'm uncoordinated because I can't eat, talk and breath at the same time.
It almost always affects my breathing. I've had EMG's and all of the blood work done, so far nothing has shown up. I've been tested out the wazoo for everything else. My Ophthalmologist suspected MG based on my Ptosis and other symptoms that I described to her. She referred me to a neuro as she wanted me on a trial of Mestinon. My appointment got pushed back though and when I saw my new PCP he felt as if I should be started on the Mestinon now. That's probably more than you wanted to know, but it's where I am now. Thanks for your help.
Abby~I can relate to just about everything you said. I'm a very social person (at least I used to be) and I talk a lot. It's so draining now. It's interesting to hear you say that you can tell when you've not taken the Mestinon. I hope it helps me enough that I can get to that point. I take Neurontin for Neuropathy and I can really tell when I need a dose of it. Thanks for taking the time to reply.
I'll get back here tonight or tomorrow to reply to everyone else. Thanks again for all of your help. I really feel like I'm learning a lot here.