Reply To: CIDP – Adult – New
Diagnosed with CIDP thirty-two years ago at age 54. Mine is recurring/remitting and easily ‘put to bed’ with only a month on steroids. I feel so badly for you snd can only imagine what you are going through.
You don’t say where you live but have you looked into the GBS/CIDP centers of excellence? This website gives doctors’ names and contact info and state whether their member doctor specialized in GBS or CIDP. Here in the greater Los Angeles area, their CIDP member specialist is affiliated with Cedars Sinai hospital. I hope you are able to find a city close to you that has such a center. It sounds to me that you are in such need of a special that even travel money would be warranted.
Sorry if I’ve taken your time if you’ve already been to one of the Centers’ doctors and haven’t achieved the level of relief that you need. I don’t really have anything else to offer. Hope you can find relief.