I mentioned in my earlier post that caffeine is a cholinesterase inhibitor just like Mestinon is. I thought I better add a caution about that.

Mestinon inhibits acetylcholinesterase, an enzyme whose job it is to "mop up" acetylcholine. So what Mestinon does is give us more acetylcholine for a longer period of time. Caffeine does the same thing, as do the nightshades (potato, tomato, peppers, eggplant).

The problem is that if you drink beverages that have caffeine, or eat chocolate, you don't really know how that will affect you! It's not "regulated" like Mestinon. And there's no way to know what eating a potato will do. It's not like anyone can say that a soda has a 30 mg. equivalent of Mestinon or that a potato has a 60 mg. equivalent of Mestinon! That's why the nightshades are relatively contraindicated in MG. I've never read about caffeine in relation to MG in any MG website though, unfortunately.

So be careful when you have caffeine or nightshades. Too much acetylcholine isn't good either. You don't want to have a cholinergic crisis. There's no way to know what affect those foods will have on your MG!

When in doubt, talk to your neurologist. Hopefully, they will know about all this.

Annie

I thought I should add that caffeine also increases dopamine, which is why it makes you more mentally alert and "feel good."

Very interesting and informative, Annie. Thanks for the info. I'm just wondering if my mega coffee consumption over the years is what masked me for so long. Also, if that may be why they get really conflicting EMG's on me, since I drink coffee before doing anything just trying to have the energy to get through. The only time I didn't have a lot of coffee before an EMG was when I was slammed in the hospital and the EMG was done early enough in the a.m. that I hadn't had much, if any, before. That's when my decrements really showed.

Love your researching - I do the same whenever up to it, cuz these doctors don't know all these little subtle food things, do they.

Becky

Thanks, Curious.

Becky, I stumbled upon this stuff by accident. I had started eating chocolate and having the occasional cola due to doctor stress. When I stopped cold turkey, I noticed I was weaker. That's when I started to dig around. I didn't think the sugar was helping, so I figured it had to be the caffeine. Thanks to Google, I just put in "caffeine acetylcholine" and hit the jackpot.

Here are a couple sites that explain the connection. The first is about nightshades and the second about caffeine and lung function.

http://www.organicfoodee.com/inspira...ghtshadefoods/

http://jap.physiology.org/cgi/conten...ract/60/6/2040

That's interesting about your EMG's. I have no idea if it can have the same effect Mestinon does on EMG's. I do know that several sites about EMG's say you shouldn't have caffeine for about 3 hours before the test. Doctors should do a study about this!!! I mean, what if caffeine does make it look like we don't have MG when we do?

Annie

That is wild! When I was super weak, I would crave chocolate - in fact I have a drawer beside my bed that is full of it and would wake up in the middle of the night to eat a piece if candy - when I was able to swallow - around 4:00 am........Haven't had any sodas or coffee in almost a year, but I do drink sweet tea all day.........you think that was my body's way of trying to get more energy?

The one thing I have noticed @ Cancer Care Centers of SA is that when the patients are undergoing chemo they have have strange cravings like mine - fried egg sandwiches, oj with lots of pulp, whole milk and the like...........I guess our bodies just know what we need..........

You would think that the drs would care enough to TELL their patients that caffiene/nightshades effect their testing....this darn disease is hard enough to diagnose without other stuff getting in the way........I just do not understand! It is soooooooo frustrating!

I hope everyone is doing well today!
Big hugs!
Erin

I found this post yesterday, and thought I would do some research on it.

Let me start with Mestinon. This drug has been around for about 40 years. When it came out, back then, research was not what it is today.

For example. Pyridostigmine has been used in NORMAL humans to try and block the actions of poison gases during war.
from http://www.ncbi.nlm.nih.gov/sites/en...h&term=9251170

What this means is that normal mice (those without a lack of acetylcholine), suffered lethal results when given both pyridostigmine and drugs I bolded in the abstract.
Tests were not done on humans, obviously, and I think this is hard to extrapolate to MG patients. So don't become alarmed yet about the word "lethal" as used here.

This is a pretty good article about MG as we know it today.
http://74.125.47.132/search?q=cache:...nk&cd=10&gl=us
This is a 2005 CE about MG and its treatment.
The mention of caffeine about 1/2 way down the lesson:
Now the Nightshade family of vegetables.
I find this an interesting subject, as I have found that potatoes set off my arthritis and PN symptoms. So I have been avoiding them for over a year. A reintroduction of a modest serving will give me symptoms again.

I found some interesting articles on this:
from http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

So what do these studies show? That under certain conditions the alkaloids in potatoes may exert an increased recovery time to normal people who have been given a
mivacurium-induced paralysis (during a medical procedure).
Would this be additive to a drug like Mestinon?
That is really hard to say.
In the 40 years Mestinon has been around (granted not used heavily due to the uncommon incidence of MG), but still we would have some anecdotal reports at PubMed on using it with certain foods or coffee tea.

I could not find any warnings in the professional literature on food intake with Mestinon. None of the drug checkers have an interaction posted with caffeine.

The nightshade vegetables have very reduced levels of alkaloids (mostly solanine) in the fruit/tubers. The majority of the alkaloids reside in the green leafy structures which we do not eat. Potatoes do have that green tint in the skin, which many know can cause GI upset when eaten, whether one has MG or not.

So certainly you can ask your neurologist about this connection with foods/coffee and the use of Mestinon. I wouldn't worry however about chocolate at this time.

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

Erin, When I had a severe B12 deficiency, I craved anything with caffeine. That's interesting that you crave things when you are worse.

Things are always changing in medicine.

But here is a doctor's advice on diet and MG, for those interested in this subject.

http://www.netwellness.org/healthtopics/gravis/box9.cfm

Isn't that the truth, Mrs. D.

I think I should say a nice word about neurologists. I know it's out of character but maybe just this one time. Once they finish school and go into practice, not a lot of them do research. Some do but a lot don't. So, if they're not taught something in school, they might not know about it. How can they tell us about not having caffeine before an EMG if they don't know about it? So I think it might be up to us to do some of the informing!

Annie... I understand completely.

The caffeine issue is in one of the quotes I put up above...
Caffeine gives twitches instead of other signals. These may cloud the issue during EMG.

It is a fine point. But it also begs the question as to why people are allowed muscle relaxants during EMGS...like Valium.
Doesn't this cloud the EMG results too? What this does is reduce tremors as well, IMO.

I personally don't think caffeine in large amounts is good for anyone. Myself included.

But a bit of chocolate daily, or one cup of coffee or tea, can't surely be so negative.

When your doctor gives you the information you asked for, please do post it here.