Myasthenia Gravis-Neuro Appointment Today
 

Well, I had my 2nd SFEMG today at MUSC in my face (left eye and forehead), left arm and left leg. Had in leg and arm to check for progresion from just ocular to full body MG. Tests were negative for progression (a good thing). Dr. said the heaviness and weakness in my legs is coming from being on Prednisone for over a year now and at times on high doses. I started at 60 mg daily February 2009 until June 2009. We lowered slowly untilt double vision came back. Went back up. Long story short - now that I have added Mestinon to the Prednisone and CellCept (and it has reduced my double vision), we are slowly lowering the dose again. In the begining Mestinon did nothing so I was told to stop taking it. It seems to be working now because we have the DV more under control with the other two meds. Was told to walk some but not too much too fast. Also, was told twitching of the left eye has nothing to do with the OMG. Said it could be from fatigue and stress from the OMG, not from OMG directly. Have any of you experiencing this been told the same thing. He wants to get me down to 7.5 mg. of Prednisone a day within a few months. Sounds wonderul to me. Look forward to hearing from you and hope everyone is feeling wonderful on this beautiul April evening.:grouphug:

I've read now and then on this list about people with twitching, and I always wonder if it's a side-effect of the Mestinon. I know Mestinon makes me twitchy, especially when I take too much of it.

Myasthenia Gravis-Neuro appointment today
 

Kathie,
I had alot of eye twitching from the Mestinon in the past. It has gone away with time. I believe mine was from taking too much of it. Once I lowered my dose it went away.

The strange thing is that my twitching started when I was not on Mestinon. It has been twitching for months and feels like my left eye wants to close. No drooping, just feels like it wants to close. When I started back on the Mestinon a coupld of weeks ago because I read on this website that someone to try it again, the twitching decreased and the double vision almost went away completely. The dr. said it was because of the combination of cellcept and prednisone that the mestinon worked the second time.

Myasthenia Gravis-Neuro appointment today
 

Kathie,
It is so interesting that you mentioned the Mestinon did not work the first time but did the second. I had the exact same thing happen. I got nothing from Mestinon the first time but after being on Pred for a few months and now cellcept it works well. I can tell when I am due for my next dose. Did your Dr. mention if he thinks it will continue to work that well once you are off the pred?
Kendra

Kendra, my doctor did not mention whether he thought it would continue to work or not. He says I will remain on a maintenance dose of Prednison, although I don't want to. Do you have a droopy eyelid? If so, is it your bad eye or the one that has to work overtime? Thanks for your post! Kathie

Hey Kathie,

Do you see a Neuro Ophthalmologist? If not, you might want to ask your neuro to refer you to one. A neuro, even the best, can't tell what's going on with your eyes like a neuro op can. Take care.;)

Hugs,
Pat

myasthenia gravis-neuro appointment today
 

Kathie,
Yes I do have an eye that drooped terrible at first. It was the first symptom that scared me enough to make me go see the eye dr. Once my pred was bumped up to 60 mg a day it went away. I am now down to 20 mg every other day and it only bothers me when I am really tired. I was at the Neuros yesterday and it started tiring out after about a minute which I was happy with considering it used to take about 15 seconds at the most. He told me we have got to get me off the pred because he thinks it is causing my depression, memory loss, etc. Today was my first dose at 20 mg I have been at 25 for about a month now. I am keeping my fingers crossed that the droopy eye doesn't come back. He took me off the cellcept and said if the droopiness comes back we will need to start Imuran. I am hoping I can keep everything under control with the mestinon alone in the future. I undersand wanting off the pred!!! I do too. It had me fooled for a while but the good effects were short lived and then the bad started coming on. I have so many side effects I can't even list them all. I was so thankful that he is ready to wean me off of it.
Kendra

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

Kendra,
He hasn't said anything about it. He is planning to keep me on a maintenance dose of Pred when we get me down to 7.5 mg. It is ashamed I had to start taking the Mestinon on my own and that the dr. didn't suggest it sooner. Maybe I wouldn't have had to be on such high doses of Pred for so long. I guess they are learning as well. :hug: