Living with Polyneuropathy CIDP, GBS, & CMT

Curious how everyone contracted GBS.....I contracted GBS after a stomach virus. How did you contract GBS?


Cleaned out a corn crib full of pigeon poop. Next week, Monday had double vision, side by side. By Friday in a wheel chair with slurred speech. On Friday, neurologist in ER diagnosed Miller Fisher GBS and started plasmapheresis same day. Almost full recover in three months. That was at age 48. Resumed running and ran first and only marathon at age 57, lots of 10K races and a few half marathons. But now at age 66 legs are giving me a hard time (numbness and weakness in thighs) and I’m fatigued a lot. Swimming and biking still work but running is hard.


My husband got GBS last January from the stomach flu as well.


I don’t have a clue how I got GBS. I think I might have been bitten by a Zika mosquito. I actually saw the mosquito and slapped it on my arm. About 6 weeks after I went down, literally to the floor. This occurred during July 2016. People think I’m crazy when I say mosquito as the cause so I go with no idea. Who knows because there is so little research into the cause of GBS. I have read that new cases of GBS are tested for the Zika Virus but when I ask my doctors they just chuckle.
Good luck everyone with your journey. You are all a wonderful group of human beings on our similar path on this earth. I always amazed by our world wide connections.
God Bless and have a great day.


My mom’s was from a flu shot


They believed mine was from mononucleosis in November 2014; hospitalized in December 2014 for GBS. Later diagnosed w/ CIDP - still take IVIG and plenty of other meds so not sure if it “was the mono” or not. I wonder if it is environmental - I moved down South to a small town 5-6 years ago and have met/spoke with many who suffer. I had lived in New York City for 30 years beforehand and never encountered anybody w/ this condition.


Had been traveling a lot for work mostly flying, got home from a trip, had caught a cold and diarrhea in late Dec.Was 32 and went to an available doc that saw me immediately on a Thursday…Gave me a couple shots, one being a flu shot which weren’t being given much in those days. '87. Within a week I was in intensive care being treated for GBS. Was in the hospital 2 1/2 months. After 6 more mos of intense outpatient physical and occupational therapy, I was back to work.


I started with sensory foot symptoms of pain and sensitivity and boom muscle weakness and diagnosis of GBS…no precipitating illness. Though I got the flu shot 4 weeks into my foot symptoms and 3-4 wk before my gas diagnosis


I got sick from a bad salad. Dr said that’s what caused it. The virus laid dormant in my body for close to 4 months then attacked. GBS came extremely quickly within a day.