I joined this group when my husband was diagnosed with Guillain Barre. He was suddenly paralyzed from the waist down and after extensive testing, the Dr concluded he had Guillain Barre. He then had extensive treatment for Guillain Barre and we even sought out a well known specialist in Guillain Barre for a second opinion. They were all convinced this was what he had and that he would fully recover within 6 mths. After 9 mths with very little improvement, we sought yet another opinion from Drs who reviewed his entire medical history and all the files related to his attack. After a year of waiting for the recovery, turns out he had a spinal infarct and never had Guillain Barre. Or a spinal stroke (as it is also referred to) and he has permanent spinal cord injury.
During a full year of treatment for Guillain Barre (about 350k worth) I did consistently question things about his condition that didn't quite fit Guillain Barre and I was always told "there can be a lot of variation in Guillain Barre". Now in hindsight, they say that the Guillain Barre diagnosis was treatable and there was hope for recovery so they went with that. But, it would have been better to know upfront what the other possibillities were and to get the therapy for a permanent injury from the beginning. They maybe thought it was eaiser to go with a more hopeful diagnosis but it would have been better to know the paralysis was permanent when the support and therapy were available to help him adjust.
Just posting for anyone that keeps saying "but these symptoms don't quite fit Guillain Barre" The Drs just kept saying "Guillain Barre can be very different in different patients" If your diagnosis doesn't seem to be right - keep searching for the right one.