Sorry things have gotten so bad for you. MG is awful.

Do you mostly have symptoms above the neck--swallow/vision/speech issues? If so, have you ever been tested for MuSK MG? If you've not been tested, I suggest you do so, as that will influence what treatments may work best for you.

Re-doing the thymectomy doesn't sound like the best plan to me, simply because there's very little evidence that doing a thympectomy in the first place puts a whole lot of folks into remission. You were very lucky to have had it happen for you, but unless there is VERY compelling evidence of regrowth (as evidenced by MRI with contrast), I think further surgery would be pointless and just would add more trauma to a bad situation.

Hopefully with the new aggressive doctors and some new treatments, the MG will become more manageable. You need an aggressive doctor when battling insurance over IVIG. Mine have been great for me and I've had no problems getting IVIG year after year.

As far as dealing with "life" I have no real answers for you. "Growing a thick skin" and looking beyond the looks of strangers has worked pretty well for me. I look absolutely HORRIBLE when flared up, and I assume many think I'm either mentally challenged or drunk from my lack of expression/slurred speech, etc. I hate it but what can you do, especially when you have a child that needs to be out and about in the world?!

I'm sure others will be along with support and advice soon. I hope your new docs are "just the ticket" for you!

Take care,

Missy