Reply To: CIDP again?

April 28, 2015 at 4:39 pm

Well Oncologist today to make sure the Protein in SF is not Cancer related in any way. All the Doctors I had with my first 15 years of CIDP have retired, every body is to young and without experience. I’m not sure that the GBS-CIDP-IVIG group are relevant any more. Sure they are but as I talked to new DR about treatment, realizing that IVIG had not been invented much less a protocol for treatment as it is now. When this stuff first hit me Prednisone was the only accepted treatment around the World. There were area’s that were experimenting and finding success but Medical procedures are slow to change and Doctors are (were) reluctant to follow some experimental stuff. Even Mayo (Rochester Minn site of excellence??)could only suggest that PP might be helpful. (Dr Windebank)
On this Home application versus Out patient infusion lab. Ok, they with the home stuff is the package you are talking about for a Doctor’s Plan of Care. Its not irrelevant as an infusion Lab may be selling a different brand of IVIG then what the Doctor would be writing orders for. As I understand it there is a difference both in application side effects and long term success of the treatment. Were talking big bucks here so all stand around holding out there hand for their share. You can’t make money on small jobs get the big ones and rake in your percentage, they won’t miss it. Cynical I know but, and I’ll try to keep it down as I swallow these enormous price tags. We also have the ego stuff to deal with, like all the Hospitals around the country advertising that they could handle everything like Ebola. Right now those big guys are crawfishing back out, no,no, send them to Atlanta CDCC. Ego’s and big bucks.
As you can tell I’m feeling feistier today ready to run my five miles and to heck with the harm it might cause. I guess I’m a little miffed as I was sure that CIDP was over after 15 years. Sure I have constant reminders (residuals) of the harm it cause me but I worked around this stuff successful for 15 years. I guess I was lucky to get those years Huh?