Thank you for discussing this
I think Suzanne hit the nail on the head. The literature does give false promises about 6 months to 2 years for full recovery. I can see why they want to be optomistic, but it is not the truth. When Zinnia’s mom died this month, I wondered if the death certificate said Heart attack. Perhaps that is why the death rate is low for GBS – it doesn’t get recognized or it is not the final blow and therefor nor listed. I bet that the death rate is higher. Or there should be another percentile for those that are permanently damaged. Therein lies the truth.
As for PTSD, I had that the year before I got GBS! SInce it attacks our nervous system, I think it is why we are so emotional. I see flowers blooming and cry. My counselor who has stuck with me when every friend and relative left, says that it sounds like grief. I lost my mother the year before and this year I lost my body(GBS), my hair(had to cut it off since my arms couldn’t take care of it and it became knotted) and I lost my friends. I look in the mirror and do not recognize the person in there. I lost my Self.
The doctors have no idea about GBS. When I told my doctor in Tampa that I thought I was getting it again (20 years later), he didn’t even blink – just calmly said, “Oh, they have plasmapheresis now.” Hah. Iwish they could give it to every future doctor. Can you imagine the change in their attitude and treatment? Perhaps a change in the literature so that they are not taught that time fixes us all better.