been doing a LOT of reading of other's posts and the 'stickies'. At this point you are probably in info-overload rite now.
Let US help YOU to focus on the things you need to know for now, then later learn the other stuff that goes with the 'territory'. Save some of your energy for what little [it's seeming] LIFE you have now.
So, if you feel comfortable, post a quick and dirty summary about what all has been going on-what has been done for which what's and then we can more closely and accurately answer your questions....It's soo much faster?

You have found one really great group of people here - folks who have gotten run-arounds and non-treatments themselves...Each person gives good amounts of time and sharing of all they've learned to help others who acquire this wonderful condition -they don't stint one bit, because they have been where YOU are right now.

We can come to cope/live with it all...some to better degrees than other. You have to learn to 'talk the talk' to your doc so he can see that YOU aren't another pushover. YES you are SCARED SILLY STUPID! I know I WAS! What normal person wouldn't be? That 'anxiety' line? It's the equivalent of those currently 'recalled' dog foods- into the compost bin or better the incinerator!

So share, let us help, and well, maybe we really can!? Hugs for now - j