Reply To: Anyone with Sensory Predominant CIDP?
I did not know there was a sensory edition of this stuff. My GBS (?) started in 1984. We did steroids at first. Then we went to Mayo Rochester in the winter.Dr Bartelson told me to go home and try PLASMA Phresis. I had over 15 PP up to 1984. I had a 15 year break and I felt good. I like to exercise, run ride or just jumping.Last year CIDP attacked again. This time IVIG was the big boy on the block. It did nothing for me. After about 8 months we decided that IVIG was not helping. My Neuro decided to go back to PP for a short period of time. After 2 weeks and 6 PP we stopped. My Neuro told me thats it I have nothing else to offer. He (A Mayo trained ,by Bartleson) that may be we should go to Mayo again (Florida the time) So within 4 weeks I’m all set to go to a more pleasant weather. My neuro did send them a letter and my hospital is affiliated with Mayo. So they already have all my hospital records. Ive got a plan to stay for three days and a life time driver to take me., I’m having autonomic systems to malfunction. The biggest on is BP. I’ve about had to argue with a good DR. He just would not listen. He was called about every other day until he’s started to allow us to medicate as we needed. He has a real hang up about PRN but he finally conceded. We saw him just last week and ask him if MAYO should examine any special areas. He said no.
So I check in on Monday Sept 15th. The only thing I don’t like about this is the nerve conduction tests. After about a half hour Im so jump I can’t even think.The nerve biopsy is painful but its over.I think they are going to try to separate autonomic system and CIDP.