Hi, Lily. Welcome to the forum.

I know that MG is overwhelming, but it's a manageable disease, especially if you educate yourself on how it works and what to look out for. And information will help you feel less afraid. MG can be scary, but there are ways to make it better.

There are basically three things that should prompt you to dial 911: An inability to swallow, an inability to take a breath in our out well, and a sudden increase in generalized weakness or an onset of generalized weakness.

As to the swallowing issue in your other post, if you can't do it, you need more help.

It can help to bend your chin downward in order to swallow, but if your swallow isn't working anymore, well, only a doctor will help.

That feeling of something getting stuck in the esophagus is not fun. Neither is squirting liquids out of your nose or choking on air or having what I call a "MG cough attack."

Speaking a lot during the day will make both the bulbar (neck/throat) and breathing muscles weaker. You might have to rest or take a nap after talking too much to recover those muscles. Or take a nap.

Sometimes MG will put you to sleep. There are times after I run an errand when I literally cannot stay awake and my body feels like a lead weight. The body wants what it wants.

Many things can make MG worse. Some drugs can, so go to www.myasthenia.org to learn more. Stress, infections, lack of sleep, and many more things can make MG worse.

The worst thing for me (and many other people) is anything that makes my body hotter, whether that's the weather, an infection, exercising (ha ha, as if that happens much), or a hot shower. There's a physiological reason for that, if you want to know what it is.

Are you taking any other drugs? Are you working? Knowing what can make MG worse does help to keep it under control.

Pushing yourself is a bad idea. The worse you get with MG, the longer it takes to recover. So if you can pace yourself, alternating activity with rest, the better off you'll be in the long run.

Don't hesitate to go to the ER if you get worse. Have an action plan, just in case.

It's a good idea to see a pulmonologist when you feel your breathing is getting worse. They work together with neurologists in a hospital when a MG patient has a crisis. They can also help you fend one off, by knowing what your baseline readings are, doing an overnight oximetry or arterial blood gas if you are getting worse, or just recheck MIP and MEP to see how well you are breathing in or out.

Cellcept can take a while to kick in. If you need more help, you might need IVIG, steroids (temporarily), or plasmapheresis.

Communicate with your neuro whenever you need to, don't just wait for that yearly appt! Get a diagnostic letter from him that you can put in your chart at the hospital or other doctor's offices that you see. Have him come up with a "what if" plan in case you do get worse.

I hope you will get stabilized soon.

Annie