Hi, I am new to the site. My husband had GBS 4 1’2 years ago. It was a quick onset within 2 days and he was total paralized and on a ventalator. He is left in a wheelchair and has little use of his hands.Luckly he has very little pain and his health seems to be ok. I understand what your frustrations are all about. We never had much help along the way and have had to deal with the trama and all that goes with it by ourselves. But I have learned one thing that if you hang onto the angry,and anxiety(Yes I’m have had many panic attacks and deal with deppression)you will only make it worse. We have to move on and take one day at a time or else we would go crazy. The medical field doesn’t know how to deal with GBS so they try to ignore it! When we feel down we try to do something positive and not feel sorry for ourselves brcause it won’t change the past.
Hope to talk to you again.