Read this article:

http://www.lef.org/protocols/neurolo..._gravis_01.htm

In the nutritional support section I read about it. I saved the article for future reference.

Thanks Desertflower! That article was great - nice to have so much info in one spot. I bookmarked it for later use.

I've been self-medicating with coffee lately. My neuro is trying to get me to reduce my steroids but I'm stuck at 40 mg alternate days. At that dose I am fairly "normal" and able to cope with the things life throws at me usually, but my non-steroid days I ALWAYS feel weaker, hence an increase in caffene those days. I make sure I begin non-steroid days with a coffee and usually have a few more throughout the day while teaching. I was always a tea drinker but now alternate between the two.

Hope you are all well!
~Kathy

Hey Desert-flower
 

:)Thanks for that link--it was really informative, and welcome! I never welcomed you in your introduction thread...I hope that you can find some good info. on the site...I know that I have!

Nicky:hug:

MH, I have to believe that everyone's stories about caffeine intake and MG are more than anecdotal. It seems like everyone has some experience with it either making them better or worse. I do a similar thing. When I have that cup of coffee in the afternoon, which I refuse to give up, I back off on Mestinon.

Mrs. D. is right, we are all different. That is why I often caution about trying anything, whether it's a food or supplement. Only try one thing at a time just in case you have some kind of adverse reaction or side effect.

Since we all have immune "issues," pampering that immune system probably is the best thing any of us could do (like lots of sleep, laughing, etc.). :cool:

Kathy, I'm still afraid that doing that every other day thing with Pred is putting you into a little mini-adrenal crisis every other day! That is not good for the body. In fact, it can be dangerous. I think it's time for a conversation with your primary or neuro about that. Maybe a level dose is better for every single day. They usually only do the every other day when the every other day is zero mg. They do that in the beginning to try to keep the adrenals functioning. When you give your adrenals a "vacation" by going on Pred every day, they don't want to go back to work once you start reducing the dose!

Annie

Hi Annie,
Sorry - I don't think I was clear enough earlier. I take 40mg pred one day and none the next (I think it was to try to keep my adrenal glands active, like you said). Plus I'm on 150 mg of azathioprine and Mestinon every 3 hours. You are right though - I really do need to go see my neuro - it's been a year and he was a brand new neuro then. Because I don't kick up a fuss and am in a fairly stable condition I don't think they remember I still need attention! I hate putting people out AND loathe asking for time off work so I procrastinate until I absolutely HAVE to go - hence my complete inability to walk, function, etc a year and a half ago! Anyways, thanks for your input.
Kathy

Interesting thread. I was formerly a serious coffee drinker, 20 espressos per day was not uncommon, I had my own espresso bar. But since closing the business I have stopped drinking coffee completely. Other peoples coffee doesn't taste good enough.

Then I got my first symptoms of MG. Coincidence? Or was I self medicating for years.

I now have caffeine in 200mg pill form. It gives me a bit of a lift, and suggests to me that I do have MG, even though I do not yet have a diagnosis.