Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: chaosowner, 35-44 Female (Patient) Published: November 02

I contracted GBS 11 years ago. My arm felt "numb" like it was asleep. By the next day it was in the other arm and I had weakness in my legs. Went to the ER they had no idea what was wrong and ordered me to a neurologist who luckily had seen this before. A spinal tap was done along with very painful nerve conduction tests. I was in the hospital for a week for observation. The numbness reached my torso and elbows. I still have trouble doing very fine motor skills with my hands. The nerves regenerating was very painful. I would not wish this on anyone.

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Comment from: Jane, 55-64 Female (Patient) Published: September 30

I had GB 16 years ago. A very frightening experience, started with tingling/numbness in legs and feet then the trunk. During the second week the left side of my face was paralyzed causing me to look as if I had had a stroke. It took at least 6 months to get back to normal but I still have a slight paralyses in the face and still have a numbness in the left leg. Don't think this will ever recover. Don't wish this condition on anyone.

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Comment from: dfin, 35-44 Female (Patient) Published: July 28

I was recently diagnosed with Guillain Barre. It started with feelings of pins/needles/numbing in my right foot then progressed up my leg and side of body to my trunk then chest, face, and head. I had a headache and stiff neck as well as flu like symptoms. This happened over the course of 3 weeks. I went to the dr 5 times and the emergency room 3 times only to be misdiagnosed and told nothing was wrong. I had a brain and cervical spine MRI, xrays, cat scans and blood work all during this time. All showed nothing. Was finally diagnosed by a neurologist who knew immediately what was wrong. Luckily I had what they considered a "mild" case. No paralysis, etc. Very scary disorder. My only advice is keep going to the dr until you figure out what is wrong. You know your body better than anyone and know when something is not right.

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Comment from: sunshine, 45-54 Female (Patient) Published: March 22

I had Guillain-Barre when I was 16. I am now 45. Mine started with feeling as if I had the flu. I had no appetite and felt really bad all day. The next day, I had no strength. I remember being on the floor changing my baby sister's diaper and couldn't get up. I had to use the couch behind me as leverage to push myself up on it. It took every bit of energy I had. I was taken to the doctor that day and was lucky that the doctor had seen this before. I also remember that while in physical therapy, someone came up to tickle my feet and I couldn't feel a thing. I was in the hospital for two months. I wasn't paralyzed. I could move, but I couldn't stand. I had to learn how to walk again.

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Comment from: why me, 45-54 Female (Patient) Published: February 17

With my Guillain-Barre syndrome, I experienced the feeling of pins and needles in my hands and feet for 24 hours, then paralysis in my whole body and weakened breathing. My vision was impaired for a short while and my face looked as if I had a stroke! It was the worst pain I ever experienced all over! I finished off with twitching muscles and made a full recovery within two months. Now it's back to work in nine months!

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Comment from: Roger, 55-64 Male (Patient) Published: June 12

I am still struggling with GBS since May 13,2012. I was totally paralyzed and on a vent for 3 months in icu, I had a collasped lung, blood clot in my chest, pneumonia twice during that period. I spent another 6 weeks in another hospital for physical rehab. When I left there with a feed tube and in a wheel chair to a nursing hone for another 6 weeks. I am little by little trying to get my life and health back. I will never be normal again.

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Comment from: anonymous, 45-54 Female (Patient) Published: February 01

I was fighting a urinary tract infection and a sinus infection in September. I woke up Monday am and got ready for work. I remember feeling so weak and out of energy it took me forever just to get into the shower. I got to work but could barely walk. I went home and went to bed. I couldn't get out of bed for 2 days. I became dehydrated and couldn't stand. I went to the ER in a small town and they couldn't figure out what was going on. I became paralyzed totally, on a ventilator and with a tracheostomy for about a week. I was transferred when I needed intensive care to a city hospital, who was able to diagnose me after a spinal tap. I was in the hospital/rehab care facility for 3 months. I am finally home and can walk with a walker and use a wheelchair for long distances. I still get painful tingling pains in both feet and my left hand. I hope this gets better. I can't work, and am waiting on social security to help us.

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