Originally Posted by Stellatum

Hi, Kimmy and welcome to the board. Please feel free to ask questions here. We're all in this together.

You can have some coffee with mestinon. The only cautions I could find say to tell your doctor if you're a heavy user of caffeine. I think the concern here is that caffeine can do the same thing as mestinon (inhibit the enzyme that breaks down acetylcholine), so if you take too much of them together, you're over-dosing, which can make you weaker. But you'd have to be drinking an awful lot of coffee for that to be a concern--just keep an eye on how you feel when you take them together. I'm so glad to hear that Mestinon helps you. It can be a bit tricky to establish the right dose.

Alcohol is a different matter. I don't know why it says not to drink alcohol with Mestinon (again, the only warnings I could find were for "heavy users" of alcohol, and not a drink now and then)--but I do know why alcohol can be a bad idea for people with myasthenia gravis. Alcohol disrupts the communication between the nerves and the muscles (that's why drunk people are uncoordinated). Since mysthenia gravis also disrupts that communication, many of us find that one drink, or even one sip of alcohol puts us (well, me, anyway!) on the floor. So be careful.

We tell all the newbies around here this vitally important piece of information: MG is nothing to fool around with. If you are having trouble breathing, or can't swallow, or suddenly get a lot weaker, don't wait. Go to the ER, or call an ambulance. If you've already had a course of IVIg, I'm guessing you already know how dangerous MG can be, and it can tank fast. So don't take any chances.

You can search this forum for key words like "thymus" and "thymectomy" to read people's stories about their operations and recoveries. The recovery is difficult. You will need a lot of help with your children. You have my utmost sympathy--it's so hard to find that sort of help nowadays. Everyone's so busy. In the old days, there would have been a maiden aunt around, or an unmarried non-working grown niece, or something, and they would have all lived nearby.

Do you have a thymoma? If you don't, then a thymectomy is not always necessarily recommended. The jury is out on how helpful the operation is. Even if it does help, you should understand that you won't reap the benefits right away.

Abby