Reply To: I don't understand -Help

February 5, 2012 at 7:05 am

Hi all,
I’ve just found the gbs-cidp site and am relieved to find both it and the forum as the past month has been a huge learning curve for myself and my family. On New Year’s Day, my mom said her legs felt rubbery and her fingers couldn’t sense feeling like usual. After hours in ER and lots of tests, the neurologist on call determined that while my mom’s symptoms didn’t completely fit GBS, all the tests had ruled out any other possibility. She spent a week and a half in the hospital receiving IVIG treatment and being closely monitored – thankfully, her breathing was never in danger. Then she was sent to a skilled nursing facility and immediately began daily PT & OT. After being there for just over a week, my mom was seen by her neurologist for a follow-up visit and it was determined that there wasn’t enough improvement so she was readmitted to the hospital for another week and a second IVIG treatment, after which she returned to the skilled nursing facility. Thirty days after her initial diagnosis, a second neurologist administered nerve conduction tests and determined that the nerve damage was extensive and ongoing. In their opinion, she will not improve.

As all of you can imagine all too easily, this is terrible news. On the one hand, I’m grateful that the neurologists appear to be following my mom’s progress closely, despite the depressing prognosis. On the other hand, in reading forum postings and other information on GBS, I keep wondering whether they’re making a long-term prognosis too early. I’m not looking for medical advice since that’s available from a number of people near me, but having access to this forum will hopefully be a resource. Sometimes it all feels pretty overwhelming.