Hi All,

Since I've got myasthenia gravis I might as well share what I've learnt about it or thought about it, so this is one more entry. I've had MG for 19 years, and I'm now aged 37 (male). I had a thymoma in the beginning, and have had generalised myasthenia, which at times was very severe with neck, arm, torso, leg weakness etc etc. On a brighter note I'm now doing very well - just some ongoing facial weakness.

I am a medical practitioner. I'm putting this information out in cyberspace just in case anybody is looking for it or has had similar unexplained problems. I think there are some under-recognised side effects of Mestinon (pyridostigmine bromide).

When I was a medical student I found that when I was nervous, particularly when I was trying to put an intravenous canula or drip into a patient, I would get a severe (embarassing), tremor. To this day I don't know why. It was a problem for a couple of years. At the time I was on large doses of Mestinon (I can't remember exactly how much - at least 60mg 4 or 6 times a day).
Once I starting working as a doctor I got over it and it wasn't a problem any more.

Nobody else I studied medicine with had this problem. I wonder if it was a side effect of Mestinon (acting in some way on the nervous system to cause the tremor, particularly when I was nervous). I was also taking azathioprine and intragam at the time, but I don't think they're relevant.

Good luck to all.

Cheers,
D

I am not a confirmed MG.. but I have something neuromuscular going on.. I have a tremor when my adrenaline gets going or when I'm really weak (i'm not mestinon though). I have wondered if a bit of shaking tremor was normal in MG . At times I"m totally fine.. but when pushed my muscles shake/tremble with weakness.

OK, but anyone with MG who develops a tremor (nervous or otherwise) needs to have a thyroid check! I have Graves, in and out of remission, and my first sign that I'm going hyperthyroid is that I tremble a bit when I get nervous or upset. Thyroid diseases among MG patients are so common that anyone who has MG should have a yearly thyroid blood test anyway.

Abby

My muscles tremble with weakness too. My eyelids quiver like jello all day long. They shake so much my field of vision vibrates. And i get visible quivering muscles in my legs and arms too.

kathie

My eyelid used to quiver long before anybody diagnosed me with MG. I get some muscle spasms that may be caused by the mestinon. If I take enough to really do any good, I have muscle spasms here and there. They move around. It is not effected by nervousness at all.

Thanks yall! that's interesting that several of you have this too... I will never forget after I had my son when I leaned forward on my arm it trembled with weakness like I had just lifted a lot of weights.... I remember thinking how weird that was.. I had no idea how much more weirdness was on the horizon!!

I have had my thyroid checked so many times.. everyone always thinks I sound like hyperthyroid (I was post partum when this all started).. but it's always stone cold normal.... I hoped that was my problem (and my only problem)as they could follow the numbers and kind of fix it! ;0!

My thyroid is also normal. I was really hoping for it to test out low. I had this vision of going on thyroid hormone and getting a free weight loss plan. No such luck. It has been tested many times.

Hi All,

Interesting stuff! I have had my thyroid checked before, but possibly only once when I was initially diagnosed with MG. I might have it checked again. Most of the time I don't really think I've got any symptoms of an overactive thyroid ie my pulse is normal, no weight loss, and rarely any tremor in recent years.

When I was taking mestinon I did get the little muscle twitches other people have described here. I'd often notice them in my lower legs, toes, and hands. Sometimes I could see my toes wiggling around. I'm quite sure these were related to Mestinon. And I think the mestinon made me more likely to get muscle cramps.

dar

Dar- I have had tachycardia, wt loss (GI symptoms), dry gritty eyes, sooo many hyperthyroid symptoms since onset - plus was post partum... everyone quickly said - we know what you have - post partum hyperthyroid.. but always normal.. normal ..normal.. I was worried about it before, but now would be sooo thankful if that was my main malfunction!

I get tremors too, especially in my hands but I suspect I may have a thyroid problem that is still in the middle of being diagnosed. I have all the symptoms (as well as it runs in the women in my family), but my numbers are also normal. It's a bit comforting to see others are having similar thyroid symptoms, I'm not alone.

As for Mestinon, when I took a trial (twice) with it, I did not react well to it. I felt shakey on my feet that I almost fell at work (and I don't fall from MG), was heavy, my speech was much worse than without it, my legs (thighs) twitched so bad, that you could see my legs twitching and trembling through my jeans. I also felt it in my jaw which was scary because at some moments (like when I was eating) I thought I couldn't open my mouth. Then it wore off once the mestinon left my system, until my next pill. My side effects were really sever so they took me off it immediately (I don't even think I was up to a full dose a day and I was having these things). If it increases with your doses maybe speak with your doctor.