Hi, Dan. Welcome to the unpredictable world of MG!

That's unfortunate that you had to spend time in the hospital, but it's the best place for you when things get worse. It's good that they knew what to do!

Would you mind clarifying what you mean by "non MuSK?" Were you positive for any antibodies?

The antibodies that there are tests for are the ACh or acetylcholine and the MuSK. There is the LRP4, but there's not a mainstream test for it yet.

So how would they determine you have "non MuSK" MG when that would mean not MuSK? Usually when patients don't have MG antibodies, they call it seronegative MG. And all cases of MG are considered rare.

Were you prescribed Mestinon? Do you believe your neurologist understands MG and what the treatment options are? It's best if you can find an MG expert to help you!

There is a lot to know about MG. It's a very unpredictable disease, because it is fatigable. The more you do, the worse it can get. It's sensible to alternate activity with rest. You'll find that sometimes you might need to take a nap. MG often doesn't give you a vote in that decision!

MG can become much worse in the heat. Try not to be out in it for very long. Some of us carry cooling packs when we go somewhere, just in case we get too hot.

Stress, a lack of sleep, surgery, infection, doing way too much, and other things can exacerbate MG. Also, there are some drugs that can make MG worse. For more info, go to www.myasthenia.org to read up on it.

Did your neurologist mention having a CT scan to take a look at your thymus gland? Some people with MG have either hyperplasia (more thymus than normal) or a thymoma, a tumor of the gland. So, please, make sure that you discuss that with your neuro!

If you don't already have a pulmonologist, you should really find a good one. They can check your baseline breathing and you can recheck if your breathing gets worse at any point. They do the regular PFTs but the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are the tests that are more MG specific. They show how well (or not) you are doing at breathing in and out. And pulmonologists work WITH neuros in a hospital setting when an MG patient goes into an MG crisis, as it sounds like you had.

Always keep copies of any tests, too.

If you have any questions, please ask. There are a lot of experienced MGers here, happy to help!

Annie