I have had twitching in my left eye from the beginning of MG. Mestinon made it go away most of the time, but sometimes it still occurs and it is almost always when I get stressed, also fluorescent lights also can make my eyes twitch.

The oddest thing I have noticed about my MG is that when one part of my body gets weak, for example my legs and arms, another part gets tense and twitchy, usually my face and especially my left eyebrow.

This makes it hard to know if I am getting too much or not enough Mestinon.

Also, the feeling you describe as worms moving under your skin, I get that too. It was most intense when my MG first started, when I only had double vision. My doctor said that this symptom confused him, I think he used the phrase "threw him off" and made him doubt the MG diagnosis. Now, I get this feeling whenever my MG is going to get worse, I think it is the antibodies going through my body since the feeling seems to go from my body center outward. Always, the feeling is the most instense in my face and around my left eye.

Mestinon has really helped with these symptoms and seems to help more and more as time goes by, but of course they never go away completely. I am only taking Mestinon.

I do wonder if I have an electrolyte problem (or something else nutritional related) as Annie mentioned but I have so many MG related problems that I just don't have time to deal with all of them including this one. Drinking water regularly and eating green leafy vegetable seem to help with my twitching, and of course the Mestinon. Any processed food seems to increase my chance of having twitches.

I want to add here that I am starting to have twitching hands and fingers recently, enough to interfere with my daily life. I haven't been eating so good because I have been tired so this confirms (again) that a healthy diet helps with whatever is wrong with me including the MG.

Also, I have read that taking calcium pills can interfere with the absorption of other minerals that you need, I think it is mostly magnesium, and this can cause muscle twitching. I am too tired right now to find the info or to make sure I have this correct, but it is worth looking into (for me and maybe for you). Maybe a different, or additional supplement will help? Or a change in your food diet? Just thinking.


Nicky, I have a problem with excessive tearing. This is a big frustration of mine. I wonder if it is a side effect of the Mestinon. I have never been much of a crier, but now any time I get emotional the tears start running out of my eyes and I don't feel like I am crying. It happens so often that I am getting irritated skin in the corners of my eyes and on the sides of my nose. I don't know what to do or even if it matters...I say that because of all the other problems with MG, I just can't seem to keep up with all these problems I have but I do try.


I hope some of this info is helpful.

Desert,

I have exactly the same thing! I have chafing on the sides of my nose and little red, itchy pimples under my eyes from the tearing...It gets really bad if it's windy outside, or if I'm walking quickly...The cold makes it worse, too..

I don't have the eyelid twitch anymore, but I do get twitches all over my body...Some, I'm sure, are from the mestinon, and others are from something else (like the twitching and cramping in my feet)...I agree with you that if I don't eat properly, they're worst!

Nicky

DesertFlower ~ Thanks for your thoughts and remarks. The first med they started me on upon my omg being diagnosed was Mestinon. My eyes and part of my entire face and speech was affected by the Mestinon. Had slurred speech and my eyes and sides of my mouth twitched and drew up like someone having a stroke. Scared me to pieces! It did all that, but didn't do anything to help with the double vision, which was my only mg symptom. Since then I was put on 60 mg Prednisone for 4 months and the double vision went away. They started slowing reducing my pred to where I am now - 20mg a day. I tried Imuran and couldn't take it. had infusions, but they didn't help. started on Cellcept in January and it wasn't helping, but wasn't hurting either. I decided to put myself back on my Mestinon this week just to see if there would be any changes. I did check with my nurse practioner first and she said it wouldn't hurt - to go ahead. I started Monday on 60 mg every 8 hours. Believe it or not, the twitching is probably 60% better during the day and 80% better at night. I also haven't had the double vision. The nurse practioner said that sometimes Mestinon along with either Imuran or CellCept worked better. I hope this continues. It is so nice to go to bed and not have that left eye twitching. I have noticed during the day when at work and under the lights and working on the computer that I do have more twitching.

The one thing that concerns me now is that my arms have become very tired when holding them over my head - just washing my hair in the shower. Also, my legs (upper part) have started feeling very heavy and almost feel like they don't want to support me when I stand. Almost like a paralyzed feeling. I haven't had this before. They are making me an appt at MUSC to have another SFEMG to test my arm to see if the mg is moving to the body. Have any of you out there had this or a similiar experience? Thanks for any feedback. Have a wonderful day.

Sorry you are having more symptoms.

This is how my MG symptoms progressed, started with double vision, then facial weakness, then arm and leg weakness and heaviness, and it got even worse from there such as trouble chewing, swallowing, walking, talking...and finally got to the point where I could hardly move at all. I am happy that the Mestinon has helped me and stopped the worst of my symptoms.

Always remember that too much Mestinon is just as bad as not enough Mestinon and sometimes it is hard to tell the difference. 30 mg of Mestinon 3 times per day works best for me, although from what I can tell this is much less than what most people with MG take.

Nicky,

Could it be a side-effect of the Mestinon? I know that's one of the possible side-effects listed. Mestinon makes my mouth water a lot, and sometimes it makes my nose run, which I think is caused by excessive tearing.

Abby

I twitch. My eyes twitch (left more than right, but left was the one most effected by the MG) My back twitches. My arms twitch and my legs twitch

When I was at my leanest and going through rehab I could watch the muscle "jump" on my leg. My physio was quite fascinated because he normally works with people on the heavier end of the scale than I was, he doesn't normally get to see the muscles on someone looking almost like the diagrams in books.

I asked Dr. Nicole at the University of Western Ontario about it when I was out for a consult visit with him earlier this year. He said it is basically normal and it happens to everybody. We're more aware of it because we're concerned about problems and listening to our bodies more closely than most people.

That isn't to say you shouldn't look into it and be sure it isn't a symptom of something else for you... but don't be disappointed to find out that it is completely normal

Brian, It probably is normal - for someone with MG. And normal for someone who has a lot of eye strain and doesn't have MG. But there are other causes for eye twitching, like hyponatremia.

According to Dr. Nicholle, it is normal for *everyone*. And I did tell her to be sure to look into it in case it is a symptom of something different for her...

Redundant information.

Seriously? You need to defend yourself because neurologically everybody twitches? I made a point TWICE to her that she needs to let her doctor know that she's experiencing these symptoms just in case it it not just normal reaction. Again, I'll agree to disagree with you, she obviously has another obscure neurological condition because her body is doing what normal human bodies do. ... Not to be mean, but it is clear I just need to go away from these boards, they're frustrating. Try to offer honest advice based on discussions with a active researching/practicing/teaching neurologist and get sucked into bizarre drama.