Patient Comments: Guillain-Barré syndrome - Symptoms

What symptoms did you experience with Guillain-Barré syndrome syndrome?

Comment from: Miro, 35-44 Male (Patient) Published: December 05

I am 43 and just experienced GBS (Guillain-Barre syndrome) on 1/12/2013. It started in my toes and raced all over my body except the right side of my face. After 6 visits to my general physician telling me to toughen up, it's only a pinched nerve in my back, my wife raced me to hospital emergency room. I was admitted instantly and was looked after. I had all the tests and a lumber puncture and then had an Intragram blood infusion for five days. After 4 days more in hospital I went home. I am having physiotherapy at home at the moment and my strength is getting better day by day. I plan go back to work as soon as I can walk a good distance without getting tired. I still have numbness in my legs, feet, arms, back, mouth and hands.

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Comment from: #Khoasen, 55-64 Male (Patient) Published: November 14

I was diagnosed with GBS (Guillain-Barre syndrome) in April 2012 which was very severe. It started with severe diarrhea, running stomach continuously for three days. I was feeling very weak in my body and was hospitalized for stroke and transferred to a private hospital where a very efficient specialist detected that my nervous system was breaking down due to GBS. He immediately took out a spinal test and took me into the ICU for emergency treatment. My whole body was paralyzed and I could not move. I was hospitalized nearly for two months doing some physiotherapy.

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Comment from: stuart, 65-74 Male (Patient) Published: October 18

I'm certain my GBS (Guillain-Barre syndrome) was triggered by the flu vaccine. I'm rarely ill and was in fine health when I decided to go for my first ever flu vaccine in October 2012. Within a few weeks I was experiencing back pain and tingling down legs and it was getting harder to put one foot in front of the other, I kept falling down as MY legs couldn't seem to hold my weight. I visited the general physician and Accident & Emergency repeatedly but kept getting sent home with the offer of physiotherapy. I eventually went to the hospital in January 2013 and was there till end of March. I lost use of my legs totally and couldn't grip anything with my hands and fingers. I had a lumbar puncture which confirmed what it was. It is a horrible thing to go through, you feel so helpless and frustrated. I had physiotherapy daily and hydrotherapy weekly which helped immensely. I am walking with a stick now but there is still not much feeling in my hands or feet. I keep walking out of my slippers without knowing I've done it. The other half keeps finding them separated in different rooms of house you've got to laugh sometimes.

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Comment from: Patty, 55-64 Female (Caregiver) Published: April 15

My husband had Guillain-Barre syndrome (GBS) 2 times, once in 1995 and then in 1997. He has recovered, with the residual fatigue, tingly legs, and no strength in hands and feet. I have noticed memory issues in the past year or so, possibly related to GBS.

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Comment from: freakie01, 65-74 Female (Patient) Published: July 18

I have had Guillain-Barre syndrome (GBS) since 2011, a very severe case. I am walking with a walker. My face is still frozen from my mouth up. I've lost all of my upper teeth due to nerve damage. This is a devastating disease. When will they research the causes and treatment! I was pretty much on my own, there is no solid course of action as there is with other diseases. More needs to be done!

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Comment from: LisaB, 45-54 Female (Patient) Published: June 02

I had Guillain-Barre syndrome (GBS) when very young, around age 3 or 4, so my memories of it are sort of vague. I"m writing because I"ve had neck pain and headaches for a couple of months, and now a tingly numb hand a few weeks. Tonight my feet and other hand are having pins and needles and I"m wondering about a relapse after all these years; I"m 54! I did have an MRI on brain and neck yesterday, so waiting for those results.

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Comment from: DAVID, 45-54 Male (Patient) Published: January 29

I am a 51 year old male. My body is tired constantly, pain relief does not work but other drugs can take the edge off trembling shaking and tingling. I was hit in the back with the worst pain I have ever experienced. I can't walk or stand for long, it feels like I have been trapped inside my home for the last 15 months. I'll be having more tests for Guillain-Barre syndrome soon.

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Guillain-Barre Syndrome - Treatment Question: What kinds of treatment did you or a relative receive for Guillain-Barre syndrome?
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