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.