Thank you both so much for your replies! And Kathie, I can definitely NEVER have TOO much information!! THANK you! I now have a good understanding of the overall concept of Mestinon. Your help and the information I have gathered on the net has been more than my neuro gave me. I am not sure how experienced he really is with MG. I am concerned because he said if I did well on the Mestinon that we would continue it for 8 weeks and then I would follow up with him. I feel like he is just giving me a dx and then a pill and no more info or anything and letting me wait another 2 months for additional care or info. I guess he assumes I will do my own research and get help from others..... Seems kind of lacking in assistance to me. It frustrates me.
Anyway... Day 3 now and the first 2 days I want to say I have noticed some good improvements in my jaw when chewing, and arms when doing most things that can often give that burning pain really quickly. I still have knee and leg weakness up the stairs but it doesnt seem to last as long and be quite as intense. It has definitely helped my shortness of breath immensely. Day 3, today, this morning off the bat I noticed I felt a little extra weak after I took the initial dose--had a real long restful sleep, so maybe I just didn't need the whole 60mg? I also had some real icky stomack reactions throughout the day today--felt find the previous days. That was another thing my neuro had said--that with the Mestinon you may have GI problems but with time they will go away. Is that true or is he confused? It's been a really rough day and I haven't felt really great overall today, a little help maybe from the pill, but it has been so terribly rainy and awful here, I wonder if maybe it's just not going to do much on some days?
I wonder if I continue to feel confident it IS helping (I keep worrying I'm just having the 'placebo' effect) and he dx's me if I should, as you said Kathie, just try and immediately switch over and get into a more experienced doctor (we have a Mayo clinic about an hour away I go to for my RA, maybe I will try and get my referral from my PCP to there for my MG too being Mayo is the best).