Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: 35-44 Female (Patient) Published: May 14

I was diagnosed with GBS in March. It started with severe back pain, then went to my face producing stroke symptoms (3 out of 5), and then went to weakness of the legs and worked up to arms and hands. I went to several hospitals, even being sent to a psych ward. I had CT scans, MRIs, ECGs, lots of blood work, and a lumbar puncture. No one could figure it out. I was even tested for GBS and it was ruled out. Finally, after 2 months in the hospital I had a doctor who did an EMG and was diagnosed. I had IV immunoglobin given, with a single "booster dose" a week later. I finally am walking with a walker, though not very far. I still have weak muscles in the face, and legs. I have very limited use of hands as they are still numb and tingly ( along with my feet). I am unsure of recovery outlook since I had a severe case that went undiagnosed for 3 months but am grateful to be alive.

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Comment from: Pepe, 45-54 Male (Patient) Published: February 13

I was struck with GBS in December of 2010. Seems like its first symptom was a minor respiratory disorder (cough) I had. About 2 weeks later I woke up with double vision. As the day progressed so did the symptoms as my arms and legs eventually weakened. On the 3rd day I could not get up from bed. That was then the time that family members decided to bring me to a hospital where a neurologist, after conducting MRI on me, diagnosed the disease. I was treated for 5 straight days with expensive human immuno globulins while in intensive care. On the 6th day my vital signs improved. I was discharged on the 9th day. I had PT and OT sessions and became fully recovered after 3 months and went back to work. I encourage all GBS patients not to lose hope for it is reversible, and much of your recovery depends on your attitude. So cheer up!

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Comment from: vip, 45-54 Female (Patient) Published: December 21

I got GBS in Sept. It started with numb fingers a couple days later the numbing went to my feet. I had horrible back pain in the middle of my back, my tongue went numb. Went to Doctor about 5 times in two weeks. Went to emergency they didn't find anything wrong with me sent me home three days later lost all control of my body I couldn't lift myself. Went back to hospital they did lots of test finally nerve conduction test proved GBS. Was in hospital a week. It's been a long slow recovery. Three and half months into it and I still can't do a lot of things get tired very quick. I am still walking with cane my feet and hands are very numb. I do PT, OT and Acupuncture every week. But I do feel like I am getting stronger every week.

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Comment from: Molly, 65-74 Female (Patient) Published: December 19

I developed GBS 6 years ago about 5 weeks after a flu shot. I experienced severe weakness starting in my legs and eventually affecting my arms and hands. Other symptoms included extremely blurred vision, choking when attempting to swallow, severe headache and pain which progressed to an unbearable state in my back, legs and arms. I live in an area where there was no treatment available and only one MD out of the 7 who saw me in the local hosp. diagnosed the problem. As a result I have been left to my own devices regarding recovery and exercises. It has been a trial and error process. I still suffer from pain and weakness in my legs, arms and hands which has not improved in quite some time. My life has been devastated as far as being able to physically do just about any activity I formerly enjoyed. I realize having GBS is a rare occurrence, but I would admonish the professionals who know and deal with this terrible syndrome to push the education of the medical people in the field so they can better treat and diagnose those who contract it.

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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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