Abby, There are so many CMS's and some that are in COMBO with MG. There's Congenital MG with acquired MG developing in the 4th decade, from the WUSTL website. That is treated with immuno's.

Do you know what your HLA's are? I had mine done when I was tested to see if I was a kidney match for my Dad. You can do too much testing to figure something out but I really have to wonder if you have a CMS and MG. I've wondered about that myself. I've had symptoms since shortly after birth. I have MG antibodies but did not get worse until after my B12 deficiency.

Have you tracked what your potassium and sodium intake are throughout the day? What about calcium? Do you get a consistent "dosing" of that through the day? If there is any kind of channelopathy, swings in intake could potentially effect that. The next time you have a sudden weakness episode, try eating a few potato chips. I know that sounds silly but it's not.

How is your BP?

Does the sudden weakness correspond at all with the taking of other meds? Or is it more random?

I'm still thinking about all of this.