My Experience with Guillain Barre Syndrome

Hey everyone. This’ll be a long one, hoping to find people who can relate to this rare confusing condition. In 2021, 2 weeks after a vaccine I developed extreme leg pain and extemetity weakness. It got so bad at night I couldn’t sleep. I eventually went to the ER because of the pain and I couldn’t run/jump barely get out of bed. They ran a ton of blood tests and discharged me. I had a lot of positive inflammatory tests (ANA, sed rate, etc.) I’ve seen rheumatologists with no diagnosis but then saw a neurologist who ran an EMG which came back very abnormal in my motor nerves. It was clinical weird because I am fully active now except I will get flare ups of leg pain and body weakness but nothing how it was at the ER. I have GD1a antibodies which are linked to GBS. I declined the spinal tap because I am honestly reluctant to get it since I am clinically better. He believes I had a guillain barre type of reaction to the vaccine. I deal with mild leg pain most days. It feels like painful strings going down my legs. My balance and strength isn’t what it used to be but I try to workout and do yoga as much as I can since that helps me physically and mentally. I’m extremely active so this can be depressing to me but I am thankful it didn’t harm my body more. Would love to hear any input from others who have experiences guillain barre syndrome.