Reply To: New Member

June 24, 2008 at 5:09 pm


I am sorry you are having to go through this. It isn’t easy being a caretaker but you need to know the people in our GBS/CIDP community really treasure and admire devoted caretakers, such as yourself.

I wouldn’t be too worried about your doctors lack of confidence in his diagnosis. Neurologists diagnose CIDP by ruling damn near everything else out. Thats not the type of diagnostic procedure you should feel very confident about. His lack of confidence means that he is being [I]real[/I] and [I]honest[/I] with you. That is important. Would you rather have some arrogant Dr. God be 100% sure about the diagnosis and possibly overlook something?

As for your wife, no one knows what she is going to be like one, two, five or ten years from now. There is no crystal ball and a doctor who tells you what the future holds for her is being foolish. I know several people with CIDP who function at very high levels and you wouldn’t know they had anything wrong with them if they didn’t go to the local support group meetings. Lets hope and pray your wife is in that category.

For right now, not knowing much of anything is the worst place to be in. You will adjust to life with CIDP and you will define a new normal for you and your family. Once you develop the new normal, things will begin getting better.