Kathie, I am so sorry for what you are going through. Believe me, I totally understand.
My doctor, that ordered my Ivig, called me personally this morning to see if I was over my reaction yet, and I was so shocked, I almost hit the floor in disbelief.
I have been so frustrated trying to get plasmapheresis, and there is such a breakdown in communication and I am thinking even caring about those of us suffering, that nobody takes responsibility anymore. He only ordered the Ivig to try because I couldn't seem to get plasmapheresis and could not get past the office staff at either the neuro or the nephrologist office.
Did they even give you an order to get the tests repeated, or is that something you have to wrangle out of them as well?
I have been left with a catheter in my jugular vein for two months and no one will take responsibility for that either.
I will think long and hard before I will allow anyone to put something in my body and just go their merry way.
I feel so bad for you because I know how it feels.