Well darn it Michelle - sometimes life just doesn't seem fair, does it!!!

At least it sounds as if your doc has your welfare foremost in his mind and he will work overtime to try to find some relief and hopefully answers for you ASAP!
It's scary when they think something's going on but they can't quite join the dots yet, so you are left in the dark at the edge of the precipice!

Take care of yourself in any way you can - I'm sorry there's nothing concrete we can do for you except "listen" and understand that you're not in a good place.

again to you, my friend....