I'm based in the UK. I just wondered what kind of attitude people had from their GPs concerning their CIDP. In my neck of the woods you rarely see the same GP twice and comments have varied from "you can't possible have tnose symptoms" to seeming disinterest, and the attitude that the condition didn't really exist. I've also seen a GP who was extremely supportive be admitted they didn't know anything about the condition. The reason I ask is that feeling supported and, well, cared for is very important. Just wanted to know what others had found.
It is very hard to get good treatment when you go from one doctor to another. I experienced that kind of treatment when my sons had to be seen in a clinic. Never had the same doctor twice and they were unfamiliar about their disease. I taught many a doctor about my sons condition and how to care for them. It also taught me how to get the best treatment available for myself.
I have the best neurologist a person can have. She has listened to me about changes in treatment that I wanted to try. I developed CIDP too late in life. My body has aged All but one change was made and that one I am still trying to get. That one happens to be a change in the amount of IVIG that I can have at one time. She insists that 20mg once a week for me is the maximum. . One of my theories is the IVIG potency depreciates and I have many things that my body is fighting and I require more IVIG to overcome them. Not much, just enough for one more good day Because on the sixth day, I can feel my nerves further up my legs changing.
There were other changes I would have liked to have but I think I know the reason that she did not make them and she had no control over it. Can't prove it. But I think (that is my opinion) insurance has a lot to do with it.