Just some fyi to remember if nothing helps

    • Anonymous
      December 7, 2008 at 10:34 pm

      I will tell you as the caregiver that no matter what always keep in mind that you can always get a second opinion and even a third. I was told this so many times and tried to make my husband do it but he had alot of confidence in his neuro.
      But he never got better with prednisone and imuran; never got better with ivig;and never got better with plasma phersis. If that happen and your doc is not responding or listening to you RUN RUN RUN DO NOT WALK RUN OUT THE DOOR AND GET THAT SECOND OPINION. Even if the opinion is the same it does not hurt to do it to make sure. Ours misdiagnosed which I know it sounds like cidp but attitudes of doctors should always be in your best interest and our neuro was not. I have never felt so dumbfounded at his attitude. His ego was bigger than him. We never got a say so for anything, never gave us any paperwork on tests and it was always “trust me”. We are now going to Mayo and it is about 18 hours for us but I am sure it will be worth it. Clevelant Clinic diagnosed him correctly so we are now going to one of the top hospitals for Familial Amyloidosis.

      Please keep this in your notes to remind you that if you are not satisfied do not wait.