Quote:
Originally Posted by AnnieB3
Kathie, I'm having a super bad day so if I sound a little harsh it's because my mind can't handle any more BS today.
When you are on Pred or any other immunosuppressants, they make MG "go away" on the EMG's. I've known a few people who have had SFEMG's done while on and off of Pred and they are always negative while on and positive while off. And everything I've read, especially from the guy who invented the SFEMG - Erik Stalberg - says that while on MG drugs, the SFEMG will look normal. There's even a section in one of his books that shows the dramatic improvement of a SFEMG after one dose of Mestinon (60 mg).
http://books.google.com/books?id=3cz...0SFEMG&f=false
http://docs.google.com/viewer?a=v&q=...OsE9x8tx17TfRQ
So, please be on the lookout for worsening of those symptoms you say you're having. Sure, it could be from the Pred but what if it's not?
I'm not a doctor but I am at least logical. And it's not logical for a doctor to say "Okay, I did a test while you were on drugs to make your disease disappear and, therefore, you only have ocular MG." Do you know how few people have "only" ocular MG?
Try to write down when the twitching occurs. Is it at the end of the day? After reading? After being on the computer? Twitching is not usually any kind of "warning" sign but you obviously want to know why it's happening. So maybe keep track of when it happens and see if you notice a pattern.
Do you have any signs of a sinus infection? That can cause problems too. Or, do you have seasonal allergies?
About the bad eye/eye working overtime. Some people have a dominant droopy eyelid. Mine is my right. As I sit here right now, the left one is down and the right is up. They can go back and forth like that. It's normal. If you lift up on the one that is drooping, the other one will go up and they can go back and forth like that. Neuros call that "enhanced ptosis." Perfectly normal for MG. And they are BOTH working overtime because they are both relying on weak muscles to focus your eyes! 
Anyway, that's my rant for the day. I hope you get some relief from it soon.
Annie |
Annie,
Thanks for your input and I do appreciate it! So, what I am reading from what you wrote is "WHY DID THEY DO THE SGEMG"? That sort of ticks me off if I really didn't need it done. He said he was doing it to see if the MG had spread to the body. But from what you are saying, the results are not true results because of the meds I am on. I did stop the Mestinon the day of the test. Funny you asked about a sinus infection. I went to the dr. last Friday (4/30) with a sinus infection. The twitching does happen more after I have been on the computer, under certain types of lighting, etc., at night and when I am tired. I appreciate the sites and will go to them and read. Have a nice day and I hope you will feel better.
05-03-2010, 12:18 PM
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