Hi Jam, going through the same… my dad was diagnosed with GBS this Aug.
Hi Jam. Your story sounds so much like what my father is going through. He is 73. I have just found this web site, it is very interesting to read what other folks are going through. Dad did not open his eyes for 6 weeks, even though we new he could hear us. He seems to be getting better, still on the vent and is slowing moving his neck and wiggles his body. I would love to talk with you more. If you have time will you email me at [email]firstname.lastname@example.org[/email]? We have never heard of GBS until now. Just looking for answers.
[QUOTE=jammamma]Thank you all for your encouraging words. I know that one of you said that doing plasmapheresis too early would offset the IVIg but they have already started it. I have to say, it is very interesting to watch. Anyway, they slowly reduced his Propofol (sedative) today and he became quite alert. He was definitely cognitive and did not seem to have too much discomfort. However, when asked if he wanted them to turn it back on- he was practically yelling with his eyes. I know he can hear us and I think that all the chatting around him was making him upset. His fever spiked tonight to about 102 but they say that it is just par for the course. They were talking about doing the trach within the next few days.
A question for those who had GBS and for those with the Miller Fisher varient (which they have discussed regarding my dad): Did your recovery go in the same order as the symptoms appeared, was it opposite, or did it happen sort-of randomly? For instance, since my dad’s was descending, will he start to feel more movement in his feet or will it be in his upper extremities?
Thanks again for all your insight. -Jam[/QUOTE]