Hi, Jerzy Boy. Welcome.
You know how when you get stressed about something and get tense? You need to practice relaxing your muscles throughout the day. You might not even know that you are tensing up your swallowing/neck/head muscles. After a while, you get used to being in a relaxed mode all day to try to avoid getting too weak. By tensing up, you are making muscles weaker.
Then don't lie on your back or stomach!
MG tells you what it can or can't do, so roll with the punches.
I sure can't do either. I always sleep on my side, propped up with two pillows (Homedics pillow from HSN, since it supports my head well). You could even try a neck brace to support your head and neck muscles throughout the day. Even a U-shaped pillow can take the tension off of those muscles while sitting. I like the buckwheat hull pillows because they're cool and not rock hard like some are.
I have similar questions about the steroids. When did you start and how soon afterward did you feel worse? Did they advise you on taking good prostaglandins while on that anti-prostaglandin drug (i.e., fish/olive/flax oil, etc.)?! Did they recommend that you take vitamin D and calcium while on it? Any advice?
Other things that can make you weaker are electrolyte imbalances, thyroid conditions, and a B12 deficiency. Make sure that they aren't missing something. Many of us have more than one thing going on.
Mestinon Timespan doesn't last more than 12 hours. That doctor needs to read up on it.
A Mestinon tablet or syrup usually kick in after about 30 minutes. Two hours after that (2-1/2 hours after taking it), it wears off. You get about two good hours of use.
The symptoms of too much and not enough are very similar, so you have to go by how you feel when it wears off (partly). If you feel worse after taking it, you might be taking too much. If you feel stronger, then it's working.
Side effects like increased salivation can go away after initial use. How long have you been taking it?
Ditto on what 4-eyes said. NEVER take a train to get any care. Have your doctor write out what's wrong and what to do if you get worse. They can always transfer you via an ambulance if need be. That's invaluable. Even oxygen will help you on route to getting more help.
You really need to have a conversation with someone soon about your condition, even if over the phone. Call your neuro's nurse and discuss this—in the morning when your swallow is better.
Until you get to know MG better, SLOW DOWN. Ditto on the no gym thing. You're not normal anymore, so your lifestyle needs to reflect that. It's really hard to get used to any disease, but MG is very tricky. It's not only "the more you do the worse you get." MG can have a cumulative effect and it can make you suddenly weak if you push too far. So give yourself some time to get used to living with it, learning as much as you can, and stabilizing it with a better treatment. Even so, one of the best treatments for MG is balancing activity with rest.
I know this sucks. We all do. But MG is not as benign as a common cold. It can kill us. You can get through this and be okay, but not without some modifications to your life. And asking for help when you need it.
Take it easy and call the neuro's office.
Annie