This is another example of one branch of medicine not knowing what another is up to. Just because there aren't articles about caffeine specifically in relation to MG (although there are many about caffeine and it's effect on muscarinic and nicotinic systems), it does not mean that caffeine is benign. Or nightshades. Or if you have both of them, while smoking and being exposed to organophosphates (which could make MG much worse, as in paralyzing the breathing muscles).
If you are an MG patient and have maxed out Mestinon, you can't be too careful about caffeine or nightshades. No offense, Mrs. D., but you've never had an MG or cholinergic crisis. The balance between not enough acetylcholine and too much in MG is a tough one and sometimes it's hard to tell which it is. It can be a delicate balance, especially when an MGer is not doing well. Just one little thing being "off" can send them into a crisis. All the articles and research in the world won't disuade my instincts about it.
The fact is that there is not enough information out there on caffeine and MG. Period. Why? Because no one is doing the cross-research that should be done. Or the EMG studies necessary. In the meantime, I plan on being cautious about the intake of these foods and drinks. Also, both coffee and nightshades contain a good amount of potassium in them, which should also be taken in with caution in MG (too much, or too little, can make you weaker).
There is an entire list of medications which are contraindicated in MG (relatively) but the only foods that have been so far are the nightshades. It's kind of, but not really, funny how foods are so easily dismissed as benign. What do you think they make the drugs out of in the first place?
Celery is a natural diuretic, for example. Someone on lasix (a diuretic) maybe shouldn't have celery, celery seed or celery salt but I bet there aren't lots of studies on that!
http://www.umm.edu/altmed/articles/c...eed-000231.htm
I have spoken to a well-known neurologist about this and he was quite interested. And this is someone very well-read. He did not dismiss this information. On the contrary, he plans to look into it more.
The fact is that not all information is cross-referenced between medical fields or even in the same field. For example, did you know that achlorhydria (no stomach acid) is considered a risk for colon cancer? No one ever talks about this but it's a fact. I haven't had stomach acid for years and that runs in my family, as does adenocarcinoma of the GI tract. These are both gastroenterology issues but not too many gastroenterologists know about achlorhydria and its effects on the body. They just throw acid blockers at anyone with indigestion instead of recommending they take Betaine HCL (mild acid) to help digest their food.
I'm not angry - just being passionate. I hate that some things are not told to patients (so they can make their own decisions WITH their doctors) and that some things in medicine are not fully delineated in science to the benefit of patients. I wouldn't dare be arrogant and poo-poo this kind of information, especially because I've had a crisis. I know firsthand that a "little" thing like heat or stress or infection or caffeine can make the difference between oxygen or a bi-pap or intubation and how long each of those things go on. And that's why I felt it was necessary to bring this up.
Just my two anecdotal cents.
Very good information, Mrs. D, as usual. Thanks for sharing it.
Annie
EMG's and caffeine
http://www.myositis.org/template/page.cfm?id=322
http://www.healthlinkbc.ca/kbase/top...2/how2prep.htm