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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-09-2009, 05:55 PM | #1 | ||
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Grand Magnate
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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." Last edited by AnnieB3; 03-10-2009 at 08:47 AM. |
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03-09-2009, 10:15 PM | #2 | ||
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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
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03-09-2009, 11:06 PM | #3 | ||
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Grand Magnate
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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 |
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"Thanks for this!" says: | erinhermes (03-10-2009), ras1256 (03-11-2009) |
03-10-2009, 01:56 PM | #4 | |||
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Wisest Elder Ever
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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. Quote:
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: Quote:
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: Quote:
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.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Chemar (03-10-2009), Curious (03-10-2009), DesertFlower (08-26-2009), rach73 (08-26-2009), redtail (03-11-2009) |
03-10-2009, 03:31 PM | #5 | ||
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Grand Magnate
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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 Last edited by AnnieB3; 03-10-2009 at 03:59 PM. |
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"Thanks for this!" says: | mrsD (03-10-2009) |
03-10-2009, 03:38 PM | #6 | ||
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Grand Magnate
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Erin, When I had a severe B12 deficiency, I craved anything with caffeine. That's interesting that you crave things when you are worse.
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03-10-2009, 03:54 PM | #7 | |||
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Wisest Elder Ever
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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
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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03-11-2009, 07:57 AM | #8 | ||
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Member
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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?
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03-12-2009, 07:11 PM | #9 | ||
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Grand Magnate
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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 |
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03-10-2009, 01:32 PM | #10 | |||
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Senior Member
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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
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