I'm really sorry you're going through so much.

Have you ever had steroids before?

There is something called steroid-induced myopathy. Was the increase in weakness associated with the steroids?

http://emedicine.medscape.com/article/313842-overview

They may need to discontinue steroids. Or try Plex (plasmapheresis). Plex is sometimes better for MuSK MGers.

http://www.ncbi.nlm.nih.gov/pubmed/21674519

Have you ever had your adrenal function tested? Time for them to think like endocrinologists, too. If you have Addison's, by chance, that causes weakness, too! Might be time for an endo consult. The nausea made me think of Addison's. Steroids can cause you to crave salt, but so can Addison's. What's your BP like? And Addison's might make sense due to the decreased appetite.

http://www.mayoclinic.org/diseases-c...s/con-20021340

What steroids do is basically replace the job of your adrenal glands. So, if your adrenal gland function is already low, that could cause increased weakness. Are you sweating at all?

It's possible to have Addison's and MG. Many of us have more than one autoimmune disease, unfortunately.

I hope they're keeping an eye on your chemistry (chem panel) and kidney/liver function.

Do you have ptosis? That's an end point they can use to see if a treatment is working.

Not everyone does well on steroids. Things could level off, but it might not be worth the risk to you.

I know your son needs you, but he also needs you to be better. The good news is that usually MGers don't have another crisis.

I hope they run the MuSK test. And if they did the EMG while you are on Mestinon and steroids, that would affect the results, making them look normal when, in fact, they're not.

I know this is hard, but you HAVE TO relax. It sounds like you have smart doctors, but their specialty is neurology.

Maybe someone should check a CPK, if they haven't already.

Trust your instincts and ask for more help, in a calm, using as little energy as possible way, that is.


Annie