Anita: I too am new to Mestinon and like you seemed to have immediate relief when I first started taking it, but now after 2 weeks, it is so-so. I started slow, a half tab (prescribed 60 mg 3x daily) and worked up to it. I am now taking 4 a day since Monday of this week. My problem started with weakness in my hands (the first of the year) and progressed to my ankles. I do feel my eyelids feel a bit heavy at times too.

Someone posted when I was asking all kinds of questions that Mestinon only helps the symptoms, but doesn't treat the disease. My neuro is still on the fence about prednisone as he wants me to have an anti MUSK test (blood draw) first. He will probably end up putting me on prednisone after that regardless of the results. Don't quite get why he wants to wait, but he says my symptoms are not typical for MG in some ways. All my other blood work has come back negative.

Again from what I have read here, everyone is different in terms of medication. I guess you could ask your doctor about prednisone and see what he/she thinks.

This is no easy thing to deal with, very discouraging in so many ways with all the ups and downs. I find I can't let myself get too hungry, try to snack throughout the day, i.e. yogurt, protein drinks, etc. Also sometimes I take a couple of Tylenol. I really don't think it has that much effect, but it's okay to take and if I feel some muscle aches I take that.

You shouldn't expect to much from mestinon. It is just a temporary fix for symptoms much like aspirin for a headache.

That's an interesting comment about it being like aspirin. Are you taking prednisone or something else or both? That helps me a bit to understand the Mestinon a bit more, because like Anita, I am a bit confused and disappointed that I am not getting the relief I was hoping for.

Yeah, I explain it to people like when you take tylenol or ibuprofen...it works for a while, but wears off and you have to take more. I'm ok with that, it doesn't bother my stomach at all, but it seems like it's wearing off faster & faster as the weeks go by, and takes longer to take effect (maybe I need to up my dosage, will be seeing the neurologist on Friday, I'll ask then). So at first I was taking it every 7-ish hours and would be mostly ok for about 5 hours before I started noticing symptoms getting a little worse. Then I'd take it and then maybe 45 minutes or so later I'd be ok again. But now it wears off after about 3 hours, and when I take another one, It seems like it takes more than an hour to start helping. Or maybe it's just that by the time it starts working, I just don't have much time before it starts wearing off again.

Then again, stress levels definitely seem to have an impact, and I seem to be pretty stressed out in general lately, mostly due to this diagnosis and dealing with all the tests and doctor visits (and now surgery scheduled in a couple weeks). I'll be glad to get to a point where I'm not constantly worried about it all the time!

I hear ya. This is my worst nightmare come true. Have you taken prednisone or scheduled to start it. From what I have read that seems what most people need to do.

I was feeling pretty good this morning and took a pill at 7, now at 2 I just took another one because I was out for a walk and started to feel it wearing off big time. I can tell when I type too. My fingers can hardly hit the keys.

Hope your neuro has some answers. Please post here if he does.

My husband has gotten a lot of relief from the Mestinon and has been on Cellcept for about 8 days. Just yesterday his leg cramps have begun again.We thought previously it was due to his back issues. Since his diagnosis on the 16 th of March they seemed to go away. Does anyone experience them and what helps?

My doc hasn't put me on anything but Mestinon yet, I've been on it for about 4 weeks now. He did just last week have me start taking it more frequently, but still only a half tablet at a time. I think I'm lucky so far, my symptoms aren't severe, and mostly affect my facial muscles (although swallowing takes a lot more effort than I'd like when I'm tired and stressed). I do feel general fatigue a lot of the time, but have never had any trouble walking or using my hands other than just feeling slightly weak a couple times. I think my doctor is trying to avoid putting me on anything else, in the hopes that the thymectomy on May 5th will eliminate any need for those. Maybe because I don't seem to have any severe symptoms, and I would like to avoid those other meds if I can, but we shall see.