I finally have my SFEMG next week so I have stopped taking my mestinon. I originally thought that all the mestinon effects wore off after 3 hours, but now I know that is not true. As I feel the symptoms come back and get worse each day, I know that there was a residual effect that was left and built up over the course of treatment and I had only just started taking the drug. I also stopped my morning dose of caffeine and nightly dose of chocolate ice cream. I also cut down on tomato and potato in my diet too. I am really getting fatigued again. The most noticeable difference is the headaches from the eye strain and the constant aching of all my muscles. I can't wait to go back on the mestinon, but a good baseline for the SFEMG and finally a definitive diagnosis is worth it all.

kathie

Oh, why am I posting at 1 in the morning. My body is so tired, I am back to falling asleep at 7pm for 6 hours, waking up and going to bed for another 5 hours. I cannot believe the improvement I had in such a short time I was on the mestinon. And I did not even have any of the side affects like the rapid bowel transit or muscle twitching even after they upped the dose. I cannot wait to go back on it. At the next visit after the SFEMG, I am going to ask about the cellcept and CT for the thymus. I hate to go on pregnisone again. Do they always put you on pregnisone when they start the cellcept?

kathie

Kathie, Please take it easy! Sleep is like a prescription for MG; without it you get worse.

I hope the test goes well. Don't worry about it. It'll be what it is. Even a negative SFEMG doesn't mean you don't have MG. You obviously had a highly positive response to Mestinon.

If you get so bad that you can't breathe well, are very weak, etc., well, you know what you should do! Don't risk your health for the sake of a test. Call your neuro if you need to too.

Let us know how things went. Whatever you do, don't wear yourself out before the test by walking up multiple flights of stairs or exercising or whatever. I think going off of the drug will be quite enough!


Annie

I keep my pills with me all the time. If I start going down hill, I will take the pills. Otherwise, I will wait until after the test. The residual affect of the mestinon surprised me. I though after the first couple of days, I would not feel any further effects. I think it took almost a week after stopping the meds until no further deterrioration occurred.

I had often wondered if all the aches and pains I had were another auto-immune disease like SLE. And I was never sure what caused all the headaches. I am now certain all the headaches are from eye strain on trying to focus to prevent the double vision and all the aches are definitely from the MG. The achy muscle all went away when on the mestinon and all came back as soon as I stopped taking it.

Thanks Annie,
kathie