Do any of you ever experience twitching, spasms, feelings of heaviness and pulling the affected eye with Binocular MG? My left eye is almost constantly either twitching or feeling like worms are moving around the lower lid and temple area. The neuro-muscular neurologist I see at MUSC says it has nothing to do witht he OMG, except for the heavy/closing like feeling. I am on 20 mg of Prednisone daily now and CellCept 2 tablets twice a day. The Mestinon never really did help and I had the Infusions which had no positive affects as well. The pulling and twitching drives me crazy and affects my work (computer) and any reading I try to do. Any suggestions out there? My general practioner says that if any other symptoms come up that may go along with the twitching then he will explore it further. It really is annoying. I have been off the Mestinon for over a year now. Went through the high doses of Pred 60mg. daily and was out of work 3.5 months. The twitching, etc. has been going on now for about 2 months. Help!

Hi, Kathie. All we can do is throw suggestions out there. I can't believe no one has even taken a shot at an answer.

Did your primary doc even run a chem panel? It looks at electrolytes, etc. Are you on Calcium AND Vitamin D? Sometimes twitching can be a sign of a calcium deficiency. You have to be on those while on Pred. Some people are more prone to bone density issues.

Do you drink enough fluids? Too much water too quickly can deplete sodium. Though people on Pred tend to be sodium sponges.

Please go back and talk to your primary doctor again. The twitches could just be the MG but people do tend to have electrolyte problems on drugs like Pred and other immunosuppressants.

And this is a silly question. Do you wash your face every night? Some people don't. I don't want to gross you out but we do naturally have some microscopic varmints on us!

Anyway, I hope you and your doc can figure it out. Sometimes we have to put up with some cramping, twitching or spasming of muscles due to MG but don't ever assume it's the MG.

Annie

I too have eye twitching, although not all the time. I have mostly ocular MG and am currently on 30mg Mestinon three times a day and 5mg of Prednisone every other day (working my way down from 40mg daily).

While mine is annoying, I can deal with it -- still trying to figure out the triggers or how soon before or after taking meds that it's the worst. I do have days (though few) where they don't bother me at all.

Fluorescent lights (like in grocery stores, doctor's offices, etc.) and bright sunlight also bother my eyes.

I only take Mestinon and have intermittent eye twitching - - which drives me nuts!! Doesn't happen every day - and I can't actually see any muscle twitching in the eye. Have no idea the what, when and wherefores of it - - have never been able to relate it to last pill.

Sorry can't be of more help.
Sue

Thanks Annie!
LOL! My husband says I probably wash my face too much. I wash my face probably three or four times a day, especially with all the pollen we are having in the South right now. The Prednisone has made my skin very oily, which is another reason I wash it. I also wash my pillow case every two days. I had an electrolyte study done several months ago and all was normal. I do take 1200 mg. of Calcium with D twice a day and potassium daily because of the lasix (sp?) for holding fluids. You are so right, Prednisone soaks up that salt. I may mention to him to test me again.

KathyV, Thanks for your input! I used to be on Mestinon and it didn't do any good. I pulled it back out last night and thought I may try it again. I txted my nurse practitioner at MUSC and asked if I could and she said go for it. It couldn't hurt. I don't think my eye has twitched as much this afternoon. One thing you said may contribute to mine - I am under fluorescent lights in my office. When working it seems to bother me more. Over the weekends when I am home, it doesn't bother me as much.

I appreciate your response. Kathie G

Sue, When I first started Mestinon and it was the only drug I was taking (January 2009) I had lots of twitching. It even caused a pulling sensation around the corners of my mouth and affected me speaking. I almost felt like I was having a seizure. The nurse said Mestinon can cause all of that. I was told to stop the Mestinon when they put me on 60 mg. of Prednisone. I was slowly taken down to 20 mg. and added CellCept. She said yesterday that starting to take the Mestinon with the CellCept now may even work better. So, I am giving it a try.

Or it could be eye strain from reading or doing too much computer work. Or a sinus infection.

I have generalized MG but my eyes are affected as well....I get that twitching in my eyes and also my toes when Ive taken too much mestinon. Take care

I was getting very bad twitching in my lower right eyelid way before my very prominent speech problems started (twitching lasted for like a month)...It was around the time that i was having mild MG sx, but wasn't really aware of it...I just felt really sick during that time...

Have you had facial weakness in the past? I have very bad facial weakness which pulls my lower lids down (can't close my eyes properly)...I think that the twitching was a sx of the malfunctioning of transmission between the nerve and muscle....I think that fasciculations (twitching) are more common in MG than is documented....I've come across others with the same problem, especially in their eyelids...

Bright sunlight really bothers my eyes too...My eyes sorta roll all over the place, and my eyelids misbehave (otherwise, I don't have many eye problems (dv and such))...Fluorescent lights make me feel spaced out...

Take care! Hopefully, it'll go away...Mine did!
Nicky

P.S. Does anyone here have problems with excessive tearing? Off-topic...That is a big problem for me...