It's really good to hear from you, Jen, even if we all wish the news were better. It's so frustrating trying to get through to some of these medicos who think they know all the answers with no inputs from us--or often even from their patients. Good luck in getting thru; you will need every bit of your determination.
Others with more experience will have suggestions. I just wanted to say I've thought of you & am glad for the update.
Take care.
C.G.