This is some awesome stuff! Annie and Mrs. D., I for one soooo appreciate the time each of you has devoted to help us all educate ourselves on these issues. I agree that there is so much info. out there in the net that we can't completely blame our neuros for not giving us all the information. And unfortunately, the medical community is just now starting to come around to realizing there's more to disease than what drugs and tests are out there.

It's just hard to find one that is that "educated".

I am going to post in a new thread another caution I just found out about Chantix (quit smoking aid). I'm not doing well enough to do it twice, so see the thread.

I see my new neuro Tues. and she lists MG as one of her specialites - unheard of in my experience - and she is somewhat involved in research through the MDA org. here in Denver. Can't wait to see what she knows!!!

Thanks again. The emotional support and opportunity to commiserate and compare notes is very important, but with lots of us research and relaying this type information we can all be a lot more proactive in our treatments!

Becky

Annie,
I just looked at the links re: nightshade and caffeine. This would appear to explain my only two vices in life and my strong addiction to them! Before coffee as an adult I had a pepsi every morning - couldn't do without it. And I started smoking when I was 13 "took to it" with the very first smoke - with no negative reaction at all.

I guess I was self medicating myself without even knowing it, huh?

Becky, That's very sweet of you, thank you. I hope your appt. next week goes really well. MG can be hard to pin down. I wonder why they don't do exercise EMG's more often since so many of us can be clinically "ok" when at rest.

Ever since my B12 deficiency in 1997 - 99, and having not one doctor be able to figure it out, I have been hooked on doing research. I was going to be a biochemist after high school but went into the arts instead. Can't get that science bug out of my head!

It's entirely possible that you were craving that boost from smoking/foods. I drank coffee since I was 17 but then stopped when I couldn't work anymore. Don't think I'll ever give it up again. I'll respond to your smoking issue on the other post.

Mrs. D is a medical professional and has much better access to articles than most people. So it's a great asset to have her on this forum.

Annie

Bumping this up for Susan. Here's your info on caffeine, etc.

Annie

This is a brilliant thread, thank you both for sharing this information.

When I get bad I crave chocolate. At the moment its Cadburys Turkish Delight - no advertising intended! But I don't know if anyone outside the UK would of heard of it! I have one bar a day at present, where normally I can go a few weeks without chocolate.

I also get a thing for diet coke! Im a tea drinker, how very british of me, but I find Im drinking more and more of the stuff! May try limiting it just to see how I get on.

Thanks again

Rach

A question for you wonderful educated people... my husband recently bought a "Men's Health" magazine and I was having a flip through when I came across a blurb about something called Toothed Clubmoss. The magazine says that this plant has an active ingredient called "huperzine A" which "inhibits production of an enzyme that in turn reduces the amount of an importnant chemical of the central nervous system called acetylcholine." Just wondering if anyone has ever heard of this or if anyone has used it to help their mg. The article was in reference to alzheimer's disease - not MG. Apparently huperzine A is available as a supplement. Anyhoo, i was just wondering about your two-cents.

Thanks, and take care!
~Kathy
PS Sorry, maybe in retrospect I should have started a new thread. Hope everyone is well

Kathy, What you posted is very relevant to this conversation!

It does the same thing Mestinon does too. They are currently researching what possible role it can have in a variety of conditions. I didn't mention it because it hasn't been used widely and is not in a "drug" form yet that is regulated.

So it inhibits acetylcholinesterase (enzyme) that actually INCREASES acetylcholine. Well, it doesn't actually increase acetylcholine - it just keeps the enzyme from eating it up so more of it stays around the NMJ.

Thanks, Kathy!!!

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.webmd.com/vitamins-supple...INE+A&source=2

Mrs. D and Annie,

I was fascinated by your research and info. While this is anecdotal info for sure, I am (and have been for years) a coffee addict. Chocolate too - - but I can make it through a day without chocolate. Not coffee. I routinely drink 8 - 10 mugs a day. Done this for 30 years or more. Since beginnng Mestinon is early June, I'm not nearly as interested in coffee. Find myself down to two or three mugs now. And never thought a thing about it until reading your posts.

Coincidence?....or a 'smart' body. No idea - - I'm just sharing the facts!! lol

Sue

One has to remember people vary.

My hubby is a coffee/chocoholic and does not have MG. But he does have ADD and I believe both of these help him with focus and concentration. Later in the day he drinks decaf.

Caffeine is used for other neuro conditions.
http://emedicine.medscape.com/article/1182710-overview

I can't tolerate coffee at all. It upsets my stomach severely. I have one large mug of Breakfast type tea by Bigelow daily. And one or two green teas perhaps in the day. Otherwise it is peppermint tea for me. Too much caffeine makes my blood pressure go up and makes me very tense and emotionally reactive. I just can't handle stimulants much.

fascinating. since starting mestinon i've cut down my morning coffee to 1-2 cups rather than my former 12 cup mr coffee pot. pepsi and mountain dew will propbably need adjustment also.