Reply To: 6 Years Post GBS

January 25, 2020 at 11:10 pm

I am starting my 3rd year with AMAN. In 2019 I had 7 IVIG infusions but I don’t think they helped at all. My history is as follows: while traveling in Spain in 2017(70 years old)I woke up one morning with a heaviness in my legs. That evening I fell down and couldn’t get up. ( no pain at all) my legs didn’t work. I was taken to a hospital in Spain and a neurologist on duty gave me a quick exam and started me on IVIG that evening. I didn’t know what GBS was! By the next day I lost the use of my arms and hands but my breathing remained stable. I spent two weeks in the Spanish hospital not understanding what was wrong with me. I assume I would wake up one morning and walkout. I had all my sensory nerves working, no pain at all. After two weeks they advise me to go back to the states, California. I went straight to a local hospital,(on a stretcher) where they did more tests and concluded that I had GBS as the Spanish doctored had noted. I spent three days in the hospital and then I was moved to a rehab clinic. Here they said I was hopeless and sent me home after 20 days. No PT. My insurance company, Kaiser, said they couldn’t do anything for me. Being on Medicare I changed insurance at the beginning of 2018 and begin getting in-home PT. Finally some hope and movement. As of January 2020 I can walk with lower leg braces and a cane, cannot do stairs and my hands are a mess. My question is this as good as it gets? My doctor keeps telling me to be patient. I’m 73 and running out of patience. I want to walk and use my hands like a normal person. Will my nerves ever regenerate? I’ve tried to stay positive these past 27 months but I am running out of gas!