Patient Comments: Guillain-Barré syndrome - Symptoms

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

Comment from: Nina, 55-64 Female (Patient) Published: November 11

I was 24 when I woke up one morning and had pins and needles feeling in the opposite arm and leg. I thought it was a pinched nerve at first but as the day went on both arms and legs were feeling the same. The next morning I could just about get out of bed. I went to the emergency room (ER) and they did x-rays and blood work. Nothing showed and I was discharged. I tried to get out of the wheelchair and fell to the ground, went back into the ER and they called a neurologist who wanted to do a spinal tap to rule out multiple sclerosis. They came back and said it was Guillain-Barre syndrome (GBS). I was paralyzed from the neck down, had to have a tracheotomy and plasma fluoresces. It took at least a full year to recover which included physical and occupational to learn to walk and function. I am now 55 years old.

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Comment from: Rezi, 25-34 Male (Patient) Published: May 05

I am 34 years old. This is my second time suffering from Guillain-Barre syndrome (GBS). Now I live in a fear every day and every night. First attack was in 2002. After 13 years it came back to me in 2015 again. Now it has been nearly a year. I am improving very slowly and strength and muscles are gaining very slowly. I had treatment of 5 IVIG (6 days) both times, which is very expensive here in my country Bangladesh. I paid for IVIG only, USD 18,000 plus hospital cost about USD 5,500 this time. But first time was a bit cheaper. First time I spent about total USD 10,000 in the year 2002. And all pains are bonus! I feel it is better to die rather than face a 3rd attack. This is my GBS life.

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Comment from: lizrecovering, 55-64 Female (Patient) Published: October 06

On Monday July 13, 2015 I came home from work and all of a sudden had a horrible cough and flu like symptoms. I nursed myself thinking it was a summer cold or flu. On Thursday July 16 I got in to the doctor and she told me it may be a virus but prescribed me amoxicillin for my sinusitis, ear fluid and lungs. By Monday July 20 I thought I was feeling better when exactly at the same time after work driving home, I started losing feeling in my legs. I thought it was restless leg syndrome. It hurt so badly. I went back to doctor on Tuesday July 21, told blood tests were fine, just a virus that has to get through me. Legs hurt so bad I went to the emergency room (ER) that night. Still no diagnosis as all tests were normal. They gave me pain pills and sent me home. Thursday went back to doctor for follow up. My legs were better but I was starting to lose vision, and still no one could figure out the problem. Friday morning July 24, 2015, I was working at home and all of a sudden my left eye started pulling, my vision got worse, arms and hands tingling and I couldn't walk; I thought I was having a stroke. I went to the ER and thank goodness that doctor realized it was neurological. I found a neurologist who clinically diagnosed me with Guillain-Barre syndrome (GBS) with the Miller Fisher variation. My spinal fluid came back clear which is really weird. My paralysis continued through my body. I was in hospital for 5 days with IVIG treatment and transferred to rehabilitation facility for 3 weeks. I had to learn to walk, and re-use my arms and hands, etc. My swallowing and speech came back quickly. It is now October 2, I still have tingling in my toes and feet and legs but can walk without my walker. My arms are still weak but right arm is improving faster than left side. I still cannot raise arms higher than my waist, and still have double vision. My nerve pain is incredible though I am on gabapentin. At night it is worse and it feels like someone has poured cement on my spine and arms when I lie down. It is hard to sleep but I take medication for that unfortunately. I didn't have it in rehabilitation. I hope it is a sign of healing but it is very weird. My diagnosis is to get back to 100 percent as I was a healthy, strong working woman and plan to be again. I hope this information helps others.

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Comment from: JoshBee, 19-24 Male (Patient) Published: September 10

I'm 23 years old. I was diagnosed with Guillain-Barre syndrome (GBS) about a year ago September 2014. Day 1 I felt numbness and tingling in my toes, day 2 I had numbness, pain, weakness and back pain, and day 3 I could barely walk. I kept on falling and couldn't get up. The general doctor suggested an MRI and blood work. All came back good. I went to a chiropractor thinking it might be a slipped disc. I was advised to see a neurologist who told me I probably have GBS (which I had no clue back then what that animal is). At my worst stage my hands and legs were weak that I couldn't use them. I had 2 weeks at the hospital, 5 treatments of IVIG and some physical therapy. Then I went to acute rehabilitation for a week. Today, a year later it is still hard to climb stairs, I can't run or jump, but thanks goodness I'm functioning. And to all of my brothers and sisters out there suffering, you will make it through! Stay strong!

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Comment from: DUTCHMAN, 55-64 Male (Patient) Published: August 31

On March 2, 2015 I went to the hospital as I thought I had a stroke (Bell's palsy, shakes, couldn't stand up, aspirating, etc.), and 4-5 days later found it to be Guillain-Barre syndrome (GBS). One week later I felt better but couldn't drive and had the shakes for about 1 or 2 months (5000 mg of B-12 helps daily). Then on July 4, 2015 I had an earache and started going deaf on the left ear, 2 months later it is getting worse.

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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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