Hi Vicki,
I echo what everyone has said - probably better than I did but would stress what Ada said in the quote below:

Don't give up though, you will finally find a Dr. that will know it and diagnose it and maybe help get it under control. My thing is not to stick with a Dr. that is not doing anything for you even if you like him. I have Drs. I like but that doesn't mean they are always doing what's right for me.
Could I add:
Never give up, NEVER give up, NEVER GIVE UP!
Be prepared for each consult with your questions organised and what you want to say planned....even using point notes.....research before you go so you already have a good idea of what to expect and if you aren't happy with what is said ask for a new appointment SOON so you can research before you commit to a treatment.....and if you can say it if you are not comfortable - say NO (I know that depends on circumstances).

then.....if you remain unsure throw it out onto this forum or any other you feel comfortable on.
I hope you don't mind.
Cheers
Auberon