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.

I have acute CIDP. I know very well what caused my illness because of the timing. I received the pneumonia 23 vaccine on Dec 7, 2017. By next day, I had acute allergic reaction to the vaccine, with heavy arm swelling, rash, hives all over top half of body–not just on the arm. Before the end of the year (next 3 weeks), I had heavy buzzing, profuse numbness, extreme itching and burning all over both feet. This was the start of CIDP. It then took 11 months and 10 specialists to secure a diagnosis and my first IVIG infusion which was the only thing to halt the symptoms since onset. Mine is a vaccine injury.

I had severe dysentery, quit probably campylobacter. One morning I couple of days after dysentery symptoms were gone, I fell down trying to put my leg into my pants. My wife, an internist (Internal medicine doc) did two reflex tests and rushed me to the emergency room in Costa Rica. I saw a physician in one hour, and in about half an hour more a neurologist examined me and immediately diagnosed me with GB syndrome. I was treated in about 40 hours after developing symptoms I was getting a Gamma globulin drip. Had I been in the US, it probably would have been a nightmare of fighting with insurance companies hospital bureaucracy and hardly any Neurologists in many areas. Most people I talk to in the US who have had GB, have had to wait several days to several weeks for a proper diagnosis. Both private and government hospitals here are pretty good with real emergencies, though you can wait just like the US for voluntary surgery. Since my prognosis was worse because of my age (then 67) and the campylobacter, I have not fully recovered, though I consider myself lucky in that I can again hike(with stick), and do activities such as driving and walking around town(without stick). I am left with weak mussels in my feet, and an intention tremor in my hands. I do get cramps quite frequently, which are normally, though not always stopped with a dose of magnesium pills (200-600 mg). For those that list flue vaccine please tell how long after vaccine dose symptoms started, that would be helpful. Sorry for running on so long, but living in Costa Rica mostly where my wife and I are residents required a little extra explanation.

I contracted GBS after a flu shot and a subsequent bad cold in 2005. I was lucky in that my respiratory system was not involved but now, 14 years later, I was left with pain in both feet from my arches to the tips of my toes and occasional pain in my hands. So I
am being told that I have have CIDP, that my GBS just slid into CIDP. The ONLY treatment I have ever received is Gabapentin and Tramadol, nothing else. I am in pain most of the time with my feet which prohibits me from doing some things I wanted to do. Nothing is helping my paid and I will not take opioids.