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