The acid in coffee and tea is hard on my stomach, even though I love them, so sometimes I substitute a caffeine tablet for a pick me up. I would rather be able to enjoy the beverages, though.

I agree limpy - my tummy doesn't like coffee much these days... I will still drink it most of the time and deal with the consequences... but it's probably not the most intelligent decision on my part :)

Be very cautious with caffeine. Yes caffeine does give a temporary boost. But caffeine affects all the nerve receptors not just those affected by MG. Mestinon is more specific to those receptors affected by MG.

You may have some very severe unwanted side effects from the caffeine.

kathie

Juliejayne, I'm sorry if my response is a bit blunt, but that's only because I care and believe we all need to be cautious in the realm of over-the-counter medicating.

First of all, treating something you don't know you have yet can be dangerous.

No, there is no way to equate Mestinon with caffeine (as a CI) from any other source. And it would be dangerous to even guess. Mestinon can be given at specific doses, with known side effects and adverse reactions.

Caffeine pills are more potent than drinking coffee. Too much coffee has adverse effects as well. Tea, too, especially for those with any clotting issues (mild as that effect may be).

There is no proven evidence which shows that caffeine in coffee, tea, or a pill is an effective CI for use in MG. There's plenty of anecdotal evidence, but do you want to rely on that for a disease that could kill you?!

Provigil/Modafinil is often used for those with chronic fatigue issues (as in sleepy tired and not fatigued muscles). Although studies have shown that the more natural caffeine found in tea or coffee is as effective. Provigil does not have any effect on MG (allegedly).

I could find no evidence that shows what exact source the companies who manufacture the caffeine pills use. What if it's multiple sources? What if strength varies between batches? Even drugs approved by the FDA have been shown to have efficacy issues.

A person's body can become used to a certain level of any drug, and need more of that drug to be effective. That's one of many reasons any long term use of those "uppers" and "downers" is not widely accepted by the medical community. They can have long-term effects on the body, such as the heart. Sleeping pills, for example, are not intended for long-term use, and there are many other, more natural, ways to have a good night's sleep.

Also, coffee does affect blood pressure, glucose levels, and can give you an even bigger "low" after having it. Caffeine pills do that, too.

Can't you buy a good, organic coffee and brew your own? They have single serving brewers that are great to use. I wouldn't trust the sourcing of any chain coffee store.

So, yeah, I'm a real downer on the topic of uppers. I do enjoy one cup of coffee a day, but that won't even help if my MG is bad. I've had days where I've had the coffee and my MG puts me to sleep anyway. Doesn't do a thing for muscle strength or wakefulness at that point. :cool:

Get diagnosed, get a good treatment plan, and then discuss caffeine intake with your primary doctor in the setting of your overall health. If you're going to self-medicate with caffeine, make sure you check in on your heart with an ECG periodically.

Annie

Annie,

Dont get me wrong, I agree with your warnings. And I appreciate your bluntness.

I have more knowledge, though anecdotal, of caffeine/coffee than anyone else you are likely to find.

Treating something that you don't know you have, is a danger. But waiting 5 years or so for the medical profession to agree a diagnosis could equally be dangerous. Caffeine in the form of coffee, tea or soft drinks, is widely used and overused.

No I don't want to rely on anecdotal evidence, yes I do want to get diagnosed. But what am I supposed to do in the meantime?

Yes caffeine does have other, less wanted effects, and should never be taken by anyone with elevated blood pressure, but that applies to caffeine in drinks too.

Taking a 200mg caffeine pill, is far better regulated than drinking several large cups of coffee. Coffee contains many other substances and varies terribly in strength. I am very much of the opinion that thousands of MG cases are not recognised because they are "in effect" self medicating, without even realising that they have a problem.

Since I react to something else in "old" coffee I cannot drink coffee anymore unless I can roast it myself. 3 weeks after roasting the coffee is old and changed. 95% of what you can buy is already too old to drink. IMO.

The caffeine pills that I have are produced by Allmax in Canada, and yes I have no idea if they are following the rules, but the same would also apply to the B12 supplements etc, etc.

Julie

Drinking a good cup of coffee has the benefit of cheering me up. I try to keep it to two (large) cups a day. I have had doctors say coffee is bad and others say that it is good. I drink it because I like it and there are some things that are just worth doing.

If it cheers you up, it is worthwhile. Just don't overdo it, and try to drink the freshest roasted coffee that you can find. It tastes better and does more good.

Aptly put, Celeste, as usual.

While one might not know every single ingredient in, for example, a B12 tablet, the difference is that there is a test to verify whether or not it is doing what it should. Then, at that point, use is no longer anecdotal.

There is no such test for whether or not caffeine is helping MG, unless you have obvious ptosis that is worse before you have it and better after you use it. Although that is still not considered to be more than anecdotal by doctors.

And if you have weakness from polymyositis, for instance, caffeine will do nothing for that disease. And if you have one of the CMSs in which there is too much acetylcholine, caffeine will only make you worse. Again, how can you know what you truly have?

The larger question, and problem, here, Juliejayne, is why you aren't receiving help from doctors and what can we do to help you so that you can?

Annie

Annie,

You are so right... why are the doctors not providing help? Well I am sure that they would say that they are still investigating. But at this point their conclusion is that I have a psychiatric problem. Described as Burn out.

I happen to disagree. But the more I insist that something is wrong, the more they are convinced that I am "malingering". Or so it seems.

If they don't know what is wrong with us, they assume it is psychiatric. Then they can refer us out and get rid of us. Saves them a lot of trouble.