Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: paulina, 45-54 Female (Patient) Published: January 14

I contracted Guillain-Barre syndrome (GBS) about 6 years ago. It started with the most severe pain in the center of my back. I was rushed to the doctors daily. They were totally baffled. No pain medications worked. My blood pressure shot up to 175/135, I got Bells palsy on the right side of my face. Still they could not figure anything out. The pain intensified, my legs gave way and I went daily to emergency room and doctors with still no answers. Finally my legs went numb and blood pressure raised even higher. I was finally admitted to the hospital as they feared a severe heart attack was about to happen. I was put on pain medications which didn't work. After 2 weeks in hospital they did a spinal tap and found out it was GBS. It was a difficult road to recovery. I used a wheel chair, walker and cane but only came within a hair of being put on a respirator. I have been back at work full time for 3 years, life is difficult but doable. I am still very weak and tired and still have some back pain.

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Comment from: Denise, 35-44 Female (Patient) Published: December 16

My symptoms began in September 2004. I had a severe sore throat for 2 days, then a pins and needles feeling in my fingertips. Then I had weakness in my legs. I was misdiagnosed 3 times by a doctor in my town. He kept saying I had rheumatoid arthritis. I was finally seen by a neurologist who knew what I had. I was admitted into hospital right away. Lumbar puncture confirmed it. Within a week I was paralyzed from the neck down, I could only turn my head. Then after 2 weeks I crashed, I had a feeding tube and tracheostomy put in. I was on the ventilator for 7 months and was told I would never get off. I did after seven months. I am still paralyzed. I was in 4 different hospitals for a total of a year and a half, then did 6 months of therapy before I could walk again. It is very hard on my family. Not enough is known about this horrible disease! I still have weakness and exhaustion issues. You learn to live with a new kind of normal.

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

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