Reply To: looking for a CIDP-specialist

November 10, 2013 at 9:49 am

Thanks a lot for your response. Meanwhile I had to discover, that prednisolon was not able to give me any benefit. My disease got even worse. My neurologist said that a CIDP should response to prednisolon and that he’s not sure about the diagnosis anymore. He sent me to the hospital. The neurologists there don’t have a clue at all and I feel very helpless.
They told me that I show signs of damage in the central nervous system as well as in the peripheral nervous system. So they make me re-do all the tests which were already done in August. Tomorrow, I’m gonna get a new spinal tap :(. Then, they want to do new MRIs, NLGs and stuff. I’m totally desperate because I have to go through all that again. I was really glad that I got the CIDP diagnosis after suffering for 10 years. And now, I know nothing for sure anymore. And I really feel like the doctors here don’t really know what to do. Everybody tells me something else. I wish I could just get out of the hospital and finally see a doctor who can really help me. I don’t feel like I’m taken seriously here. They just keep testing me again and again… 🙁