I had GBS 20 years ago. I was lucky to be diagnosed within 2 days and had plasmapherisis for 2 weeks. I was unable to walk and had difficulty using my hands and arms but was never on a ventilator. I was in a wheelchair for about 4 months and then on crutches for about a year while I learnt to walk again. I still have bad residual weakness in my legs and dropped feet which makes me 'walk funny'. I know many people recover 100% from GBS and I wanted to know if anyone has any suggestions at all for improving the strength and mobility in my legs. I am very active despite this, I cycle, horse ride, swim etc and I can't understand why I haven't made a full recovery.
Hi I am two and half year out of this crazy ride and still I have not fully recovered. Just patiantly waiting mynuro dDr. Say I will recover. As of now still not fully recovered a little worried not may be having set back I refuse to go back to my first nuro Dr. Fell she just doesn’t understand g.b.s. well good luck to you
I am 40plus years out. I was 18 months. One area hospital told my mom to get her fitted for a wheelchair because there is nothing we can do(this was 1971). My mom then picked me up took me to the other hospital ( only like 5 miles away) thank goodness in the small city we lived in they had 2 pretty large hospitals. The pediatrician stayed up night after night with me and my parents trying to find a diagnosis, and he did but he also said that if I had to go on a vent I probably would die (it was from neck down) so me crying was the best at the time. He became like one of the family. He was the reason I chose to be a nurse as early as I can remember. I have cared for patients in the past with GBS and was able to be a comfort to them, especially a young man. His wife has just had their first baby and they were terrified. I felt good I could be there for them, especially the other nurses on the floor were not as familiar with it as I. I have stayed home with the kids since 2003. My oldest developed ITP. A PLATELET disorder. Which became pretty serious. He has been in remission for 6 years thank goodness!! It’s strange how it repeated with my son we both has autoimmune type illness at a young age. I’m glad I found this site, I truly believe there needs to be research done post “recovery” over time thanks for letting me vent!!
It looks like you have the carbon fibre AFOs. I don't know about the USA (I'm assuming that is where you are from) but in SA they are hugely expensive. I started out with the plastic Swedish ones but the left one kept breaking so I had one custom made for the left leg (still cheaper than carbon fibre). The Swedish ones are very comfortable and don't intefere with driving but the new one is bulkier and taking a bit of getting used to. They help a lot with my balance too which I hadn't expected. Good to know that I am not the only one who has trouble so many years later, thanks for chatting.
mdolich said:
20-20150630_154446_resized.jpg (688 KB)I still have a lot of residual neuropathy and weakness in my feet and hands, but then again, I was re-diagnosed CIDP in 2006 after having relapses.
I also have drop foot/feet, and wear AFO's for balance. They work very good in helping me keep my balance while walking. They can be a pain in the butt while driving, LOL.
Thanks for sharing and good luck to you!
kel said:
Hi I am two and half year out of this crazy ride and still I have not fully recovered. Just patiantly waiting mynuro dDr. Say I will recover. As of now still not fully recovered a little worried not may be having set back I refuse to go back to my first nuro Dr. Fell she just doesn't understand g.b.s. well good luck to you
Thanks for sharing your story. Good luck with your son. It is inspiring how you have helped others.
Susanne said:
I am 40plus years out. I was 18 months. One area hospital told my mom to get her fitted for a wheelchair because there is nothing we can do(this was 1971). My mom then picked me up took me to the other hospital ( only like 5 miles away) thank goodness in the small city we lived in they had 2 pretty large hospitals. The pediatrician stayed up night after night with me and my parents trying to find a diagnosis, and he did but he also said that if I had to go on a vent I probably would die (it was from neck down) so me crying was the best at the time. He became like one of the family. He was the reason I chose to be a nurse as early as I can remember. I have cared for patients in the past with GBS and was able to be a comfort to them, especially a young man. His wife has just had their first baby and they were terrified. I felt good I could be there for them, especially the other nurses on the floor were not as familiar with it as I. I have stayed home with the kids since 2003. My oldest developed ITP. A PLATELET disorder. Which became pretty serious. He has been in remission for 6 years thank goodness!! It's strange how it repeated with my son we both has autoimmune type illness at a young age. I'm glad I found this site, I truly believe there needs to be research done post "recovery" over time thanks for letting me vent!!