Hey Rumpled
Good to hear you are getting somewhere. Have you started the mestinon, are they working? How much and how often are you taking them(hope you dont mind me asking) Hope all these visits to doctors helps,
take care
redtail

I was given 60mg of mestinon. I can take them every 4 hours but I only have 30 pills to try. It did not really do much. I took it for the first time yesterday. It knocked me out. The other doc basically took 15 minutes to tell me he could not help me at all - something about being too complex. LOL. I guess I have to find some center that will take me on but I am afraid that it will be another 12 year battle like it was for my Cushing's. I don't know if I have that energy in me. I barely had it last time. Why can't I have something easy like a cold? Sorry for whining...
I will try more mestinon today. See what happens.

Oh Rumpled you whine away(although I dont think you are) I think it helps,
How did the mestinon knock you out? I know Ive had conversations with other people and doctors, and it should help your MG, and it should last for up to at least 3 hours. I know about the to complex, Im sure my doctor just groans when he sees me comming, I always leave without telling him the whole list of complaints!! I agree Id just like a common cold, or even just one thing wrong with me instead of several, it just aint fair is it?!?!?!? I hope you can find some help somewhere, someone who not only cares but can help as well.
You take care, and if you need to vent please do, it helps to get it out, and we all understand.

I am not sure how mestinon is supposed to feel but how is feels for me is that I get a very funny feeling in my mouth. And my nose runs. I purposely try to use my arms as they are the weakest but since they are a bit frozen in the shoulders, it does not seem to have an effect. And the last two nights, I have slept solid and snored a lot (my husband complained!). My arms feel more heavy instead of better and with sleeping in such an awkward way, my neck hurts too. I don't know what I expected but... it just did not seem to make things work. I was trying hard to mash potatoes and stuff to push myself and I just got more tired. Hard to judge if it helped or not but I think mostly not.
Yeah my doc groans when he sees me too. He knows me so well that he does so literally!

Hmmmm, I know that when I take my mestinon, my eyes open up, and I get more usage(is that a correct word??) out of my arms and legs, ie if before I take my mestinon my arms arnt working, I may find it difficult to lift my legs or wash the dishes, after taking mestinon its easier, not 100%, but not as much of an effort as before. Hope this little explination helps you know how mestinon helps me. take care
ps just did a quick google and a runny nose can be a side affect of mestinon, which thankfully I cant say Ive had, just all the other unpleasant ones!!

My Mestinon is basically what keeps me going. If I forget to take a pill, I notice the fatigue when I'm about an hour over-due. Often the first thing I will notice if I am late is the feeling of a weight on my chest, from the fatigue of the breathing muscles. Then I know I've got to take a pill. Like right now, I'm late for my bed-time pill, and It is rather a strain breathing. Basically what I notice when I take the Mestinon is more a lack of fatigue than a positive feeling of being able to do more, more strength in arms, etc. Does that make sense? Just a the fatigue tends to creep up insiduously, until I realize I've forgotten a pill, so the effect of the Mestinon kind of "creeps" up, keeping me from feeling the fatigue.

Do those that have to take a bedtime dose of Mestinon have to also take a snack with it to keep it from hurting your stomach?