[momma3love]

I have had MG since about 2002/2003. I had a thymectomy in 2009. I test negative to all blood tests so far except one time, I had one positive Achr. SFEMGs are pretty much always negative. I do not take medications because for now I am being treated like I do not have MG despite having had a thymectomy. The no MG attitude has been since I have had a new specialist, the amazing one moved out of state. I have had several exacerbations over the years but I recover quickly, most of the time, so they say I have anxiety, etc. Before surgeries I have plasma exchange and still have trouble after. Also my thymus was quite large. I seem to be very sensitive to meds with a long list of allergies as well. So just wanted to start with some background on me...

I have recently had some different migraines. MRI of brain shows two tumors on my pineal gland. Also a chiari malformation. I will be having brain surgery next month and I am trying to find examples of MG patients who have either had brain tumors or surgery. So far no luck. Because I am so abnormal in so many ways and the new neuro-muscular specialist insists I do not have MG I am more worried then I normally would be. I tried to change specialists after the first time seeing her and was told I was not allowed to do that. I am still getting told that. So if anyone has any insight in what to do there I would be so appreciative. I have to use someone from that office because I have to have surgery at OHSU, it's the only place in Oregon equipped to handle this surgery and the plasma exchange.

So basically if anyone who can give me a place to look for MG and brain tumors and/or surgery info would be, that would be great! Also chemo and MG would be helpful. I do not know yet if the tumors are cancerous but my symptoms are troublesome.
THANKS tons!!!