Reply To: Not diagnosed..need help.

June 18, 2012 at 2:48 pm

Dear GAVol / Fred,
Your story looks a lot like mine. I just think I am a bit younger though. I got my first symptoms a year ago, it took over half a year to be diagnosed CIDP. I am treated in the best hospital we have in the Netherlands (one of the academic hospitals). They cannot cure me, but try to make my life as good as possible. Some nerves are damaged too far to heal. My insurance company does not object so far. I started with corticosteroids, now IVIG, every four weeks. Like you, Fred, I try to enjoy the things I still can do. I am thinking about retiring, which is a hard decision, I love my work and I am only 43 years old. I still can climb stairs, indoors I walk without aid, small distances outdoors I use a cane, longer distances I use an electric scooter, I can work a little bit in my garden, on good days I can go to the supermarket or drive to the forest nearby. My wife still has a fulltime job and we own a car, so together we can visit family and friends etcetera. We are planning a little holiday together. I just want to state that a good quality of life is possible with CIDP, though it seems to me that the Europesn system is a lot friendlier for disabled people than the American system.