My heart goes out to you Rae. I know how it feels to be overwhelmed by serious symptoms and a lack of proper response to them. I don't know if it's an option for you but over here there is a 'new to me' option of getting a medical advocate. I recently talked to one myself and found it to be very helpful. Of course they charge for continued help and I know that's not option for everybody. Still, even the initial conversation was for me helpful and encouraging. In my case I got some ideas that had not occurred to me on my own. It's good to have even a little help.