Welcome to the forum!

MG can be mild for someone for a few years, and then be worse, and then be better! The one thing that neurologists say about MG is that the only thing predictable about it is its unpredictability!

I wouldn't call anyone's bad experience a "horror story." Becoming worse is just a reality that some people with MG have. It's important to know that, so that a person can avoid pushing their body too far.

It's not about being scared. There's no point in that! It's about knowing as much as you can about MG and being prepared for anything—good or bad or somewhere in between!

Have you checked with an endocrinologist as to why you have thinning bones? It could be some underlying parathyroid issue.

No, Pred would not be a good choice for you! But there are other treatments, which your neuro should go over with you. You are in charge of your health, along with your doctor. You have to trust your instincts when deciding on any treatment plan.

So many things can make MG worse: infections, stress, hot/cold weather, lack of sleep, certain drugs (see Home for a list), doing too much of anything in a sustained or repetitive way, and many other things such as surgery. Get to know what there is about MG so that you can stay as mild as you can!

Drugs are helpful. But MG is ultimately managed with common sense and rest. Even those on drugs can become worse. It's such a guessing game! Don't let that alarm you though! A person gets used to their "normal" after having MG for a while.

I won't sugarcoat it, however. MG can put people into a MG crisis, where they can't either swallow well, move well, or breathe well (or all of the above). That's the time to dial 911. One can't predict how severe a crisis will become, or how quickly.

Not everyone who goes into the woods encounters a bear, but I sure would like to know what I'd need to do if I did!!! It's the same with MG. This info isn't meant to scare anyone, but to prepare them for what might happen.

Even if you don't have breathing issues right now, you might want to see a pulmonologist for baseline breathing tests. Then they will have something to compare to if your breathing were to become worse.

Set your MG up for success! If you get overheated, cool down and rest right away. If you have a cold or lung infection, watch for increasing difficulty breathing (and don't take a contraindicated antibiotic!).

My life isn't the same as it was, but I have a good life. No, I can't work. But I can't take drugs other than Mestinon. Some people work and are just fine. It's hard to say what course your MG will take.

Take some time to get to know MG. The people here are great! They can offer info and support. And it helps to read examples of what others have been through.

Anything else you need help with?

Annie