I just wondered if anyone else has some of these symptoms. I have been assuming its the MG but I could be wrong. I have really bad muscle cramps. The more weak I am the more I have and I get them everywhere. Even in my fingers. My legs are the worst. Its not exactly like a charlie horse, tho I get tons of those. My muscles just tense really bad and spasm like crazy. It is very hard and painful to move. I have to walk weird to get anywhere.

Also does anyone ever seem to take as much mestinon as allowed and it just does not seem to help? I have had a sorta dx for 5 years but just got the official one a few months ago. I have been struggling bad since my thymectomy, and they only want to put me on Imuran. I was really hoping for IVIG. Especially since rest and mestinon is not helping. They dont want to put me on pred, besides I refuse that stuff. I do not tolerate it well, its some weird genetic thing. My mom and grandma cant tolerate it either.

Anyway just curious about all that. Thanks for any input. Hope everyone is having a positive day today.

Funny that you mention your spasms and muscle cramps. I have had severe spasms and cramps since I started on mestinon. They are all over my body and no explanation or reason as to when and where they might happen on me. Sometimes I can't even sleep due to the spasms. Laying down seems to make them worse with me. I seem to have them more after IVIG treatments, which I just had last Monday and Tuesday. I am even having twitching of my eyes, which is about to drive me crazy! I wish I knew how to control them, but I have asked and my neuro has just told me that he can't control that. Life goes on and I just make the best of it! Hope you have a great week.
Simon

I often get cramping in my leggs after I take mestinon and almost always get the twitching in my eyes after taking it. I sometimes get a host of side effects and can only take for 3 days at a time. Hope you find out what's causing it. Take care.
Pat

Hi there, I can't say what is causing this problem but I can say that I too have a bit of this problem and I don't take any medication because I react badly to it all. Maybe it is a part of the MG after all, I have learned a lot from this site since I was Dx'ed 18 years ago, many things that are MG related they told me years ago wasn't so keep telling us things that are happening and maybe some of us won't feel so "dumb" about what we are feeling.

I react similar to what Simon posted. It is worse when I lie down. I sometimes have to get up and walk off the cramps while I am in bed. Or if I strectch, I sometimes get them. I get cramps bad in my toes, so it is hard to walk when I have them. I also get charlie horses in my ribs, which make it hard to breathe.

Simon, I know what you mean about the twitching of the eyes. As I said, I get that from the mestinon. However, not long ago I was not taking any mestinon and my left eye was twitching non stop for weeks and it was driving me nuts. I saw my neuro ophthalmologist and she said she could stop it by injecting botox in the muscle that was causing it or I could just wait it out. A needle in my eye did not sound very appealing so I chose to wait it out. It did finally stop about a week or so later. I've had it happen a few more times, but only for days not weeks. She did say it was due to the MG. Hope yours gets better soon.
Hugs,
Pat