This is sending shudders up an down my spine!

As I too have BC/BS.
Two things come to mind tho?
There IS an appeals process – web up you plan’s site and get the ‘details’ if you can…. or call and ask a rep to send you via e-mail or real mail all INFO ON THIS PROCESS.
Secondly? It is my understanding that continuous IVIG is a ‘given’ once appproved, BUT only IF it shows either noticable and/or continuous improvement… or that, without it there is a definite reduction in the quality of life and of function.
I would find out the ‘process’ first for appeal, then get a lawyer to help both you and your doc put the KEY and CRITICAL wording for you case to continue infusions. Soo? Go out and appeal! If it becomes necessary, contact news station and paper advocates and get the word out!
This sounds depressing right now, but with the right sort of help, you will get what you need. Don’t be paralysed by the fear? FIGHT BECAUSE OF IT!
My heart and the little strength I’ve to spare are with you! Please let us know how thing go? Keep faith and heart! I am sure that good things will come your way! HUGS etc!!!!!