I have recently been diagnosed with Myasthenia Gravis, I have done one set of IVIG infusions and are set to do more soon, I am on Mestinon which has saved my life, I'm not sure how I would be managing without it, but it says not to have spicy food, caffeine or alcohol while on this medication! Why?? Somedays caffeine is all that gets me through the day, and my husband and I enjoy a drink or two every now and then!! While it just make the Mestinon not work properly or will it make me sick? I am going to see the Neurologist on Wednesday and I'm hoping to find out when I can have surgery to remove my Thymus Gland. Does anyone know what the recovery time is after surgery? I have two small children to take care of and have no idea how I'm going to make this all work!

I drink coffee all day long and take 360mg mestinon a day. Oh one other thing Mestinon is like a 3-4 hour bandaid and IVIG is like a 3-4 week bandaid.
Mike

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

Thank you so much, it's nice to talk to people who know exactly where I am coming from!

So you will continue to do IVIG forever, or only when you are really weak

There are some real powerful drugs for this disease that are a long-term fix but come with dangerous side effects. I was on Imuran for 12 months and it made me real sick but it was working and we didn't know it until I was off it for a couple days and then felt like Superman. The side effects were masking the real effects. I am now on Cellcept which is also a long term drug. Most Neuro's want to get you on a long term plan so you can reduce the Mestinon and IVIG.
Mike

I was just diagnosed Dec 28, I'm very lucky that I found an amazing doctor, who was going to do everything she could to figure out what was wrong with me, she used all her resources and by the end of that day we had a diagnosis! They have been doing everything they can to fast track me as I was sooooo weak, I could barley walk let alone take care of my 2 year old and my 9 month old!! I'm going to an emergency neurologist appt Wednesday and I'm hoping to know more about what is going to happen in my future, I tell you it was pretty scary when it hit me so fast and hard, what a crazy disease

Kimmy, Welcome. That's great that you got diagnosed so quickly and are getting good care. That's half the battle.

The other half of the battle, in my opinion, is managing your expectations. Some MGers have a tendency to overdo it, once they get better on medications. You still need to alternate activity with rest and use common sense. You do not want to go into an MG crisis, where you get so weak that you need more meds and, possibly, intubation to help you breathe!

Do you know the warning signs of an MG crisis? If you can't move well (generalized weakness), swallow or breathe in and/or out well, you need to dial 911. As you found out early on, MG can get worse quite quickly and you don't know how bad it will get. Don't let that scare you! You experienced warning signs and you knew something was wrong. Pay attention to those warning signs, rest and, if you don't get better, call your doctor or go in.'

Do you have a pulmonologist? If not, try to find a good one that works at or has privileges at the same hospital as your neuro. They can do baseline testing and can keep track of how you're doing yearly. If you get worse, they can gauge how much worse. And they work with neuros in a hospital setting if you ever have to be admitted for your MG.

Have you gone to www.myasthenia.org to learn more?

I put this in the other post but I'll put it here too. The Ice Pack Test is something often done in an ER when a patient - who isn't diagnosed with MG yet - presents with weakness, double vision and droopy eyelids (ptosis). Ptosis can be temporarily improved when a cold pack is placed over the eyelids. It's the quick and cheaper version of the Tensilon Test and doesn't have any side effects. It is indicative of MG but not diagnostic of it.

What's funny about taking Mestinon with alcohol is that Mestinon syrup, the version I take, has 5% alcohol in it! Ditto on what Abby said about alcohol. Some MGers can tolerate small amounts. I can't tolerate it at all. In fact, the last time I had a couple sips of champagne - at a noon brunch celebration - I woke up that night unable to breathe for what seemed like forever. I have worse bulbar symptoms, though, so I'm more sensitive to sedating drugs or alcohol.

Some people get an upset stomach with Mestinon, so spicy foods "might" add to that. If you don't have a problem, then go ahead and eat what you want to. Besides, a good, healthy gel coating of the stomach is what keeps you from an upset stomach (usually). Omega 3's in the diet help greatly.

Don't give up your caffeine. I don't know what I'd do without that afternoon cup of coffee. Caffeine is a cholinesterase inhibitor like Mestinon. So are foods of the nightshade family (potato, tomato, eggplant, tobacco, pepper) to some degree. You shouldn't have to give up those foods either. But if you have a baked potato, a cup of coffee and Mestinon at the same time, you might be inhibiting the enzyme called "acetylcholinesterase" or AChE too much and end up with too much acetylcholine or ACh. Then you might become weaker.

AChE is the enzyme whose job it is to mop up after ACh after it does its job of making muscles strong. Mestinon keeps that enzyme from doing that so we can use our muscle gas for a longer period of time.

Mestinon kicks in about 30 minutes after taking it. It then wears off about two hours later. How that goes is different for everyone, depending upon things like metabolic rate, degree of severity of MG, etc. Too much Mestinon isn't always better. Sometimes your neuro will increase the dose amount or increase the time between doses. It's a really tricky balance and you have to take some time to get used to the drug. If you're doing an activity, for example, you use more muscles and need more acetylcholine. You may "use up" the effectiveness of the drug sooner. Think of it all as supply and demand.

I'm sure you'll do fine getting used to this disease. It's a handful but it sounds like you have a great team helping you. If you have any more questions, holler. These guys are amazing to bounce anything off of.

Annie

My treatment plan is IVIG and Mestinon, long term, possibly for the rest of my life. That is the only treatment I've ever had. I get IVIG every other week, for two days, 25 grams each day. I've been getting treated for one year now.

Recovery time is individual - just like MG is and depends on what type of surgery you have

Being 21 days post full sternal thymectomy - my best advice for you - arrange as much as possible before hand - especially in the hands on HELP department- AND USE IT - swallow your pride, cover up the superwoman tattoo and have people around to take care of YOU, to take care of your children, to even help out your spouse! Call in all favors from friends and family if you have to- friends and family so often feel helpless and don't know what to do - TELL them and don't be embarassed or shy about it: I won't be allowed to lift the pots and pans for a few weeks: can you cook a meal for me/the family on these days; I'll be on pain medication / sleepy- could you watch the kids while hubby is at work; I won't be able to lift the laundry basket and take it downstairs; would you mind doing the laundry..... These are things you might not being doing for awhile depending on the type of surgery- things that someone else CAN help with.....: The less YOU have to stress about / worry about - the easier it is for you to heal.

Make sure your spouse sits down and HEARS what the surgeon says about recovery and UNDERSTANDS just how important it is for you to REST, have help and what you SHOULD NOT DO- Don't sugarcoat it for him / try to "protect him" or figure you will be "back to normal" in a few days -; if you have full sternal I can guarentee you it isn't comparable to anything else you have been thru - even a C-section - you will need time - that precious commodity we woman give so little of to ourselves - time to sleep, time to heal, time to just sit and stare at the same spot on the wall or movie on the tv and "zone" out and do absolutely nothing.

Talk to your work about FLMA, take advantage of any short term disability insurance - to take the stress off the financial department; be up front with your job and see what if any accommodations they can make; - be sure too to get a job description and discuss it with your surgeon - what you do at work as well as what type of surgical approach will affect just how long he/she will want you off to recover.

There are a thousand other little things that help = from stocking up on paperplates, instant/quick meals to making sure you have enough pillows to keep propped upright to sleep for the first few days home..... Just ask the folks around here - they''re a right smart bunch and alot have been there and are more than willing to help us newbies survive the hurdles MG throws at us...