Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: Ruthann, 65-74 Female (Patient) Published: June 02

In October of 2012 I woke up in the middle of the night with feet and hands that were numb and hurt at the same time. I could not walk. Thinking that I may be having a stroke, we went to the emergency room. One of the first questions I was asked was if I had had a flu shot. My answer was yes. Within a few days and after several tests I was diagnosed with Guillain-Barre syndrome (GBS). By that time I could not talk, or swallow, or breathe on my own. I was in the ICU for 3 weeks, on a ventilator, and feeding tube. I slowly began to recover. The left side of my face also was paralyzed. I spent 3 months in the hospital. I needed to learn how to swallow again, and eventually how to walk. It has been 19 months since I first became ill, I am able to get around with a cane or walker, extreme fatigue is part of every day, and numb tingling painful feet are what I am still experiencing. I am grateful for the amount of recovery that I have had, because I was not expected to live.

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Comment from: stokkecity, 45-54 Male (Patient) Published: May 30

I am currently recovering from Guillain-Barre syndrome (GBS). I"m a very healthy cyclist and fitness enthusiast who was convinced to take a flu shot in February of 2014. My first symptoms were a slight tingling in my fingertips and toes on March 8th, and by the end of the month, I could no longer stand up and bear weight on my legs. I spent 2 weeks in the hospital receiving plasmapheresis, and left the hospital in early April feeling strong. After three weeks, I had a relapse which landed me back in the hospital for two nights and a schedule of 6 out-patient IVIG treatments. It"s now nearly June of 2014. My walking is good, but my hand and arm strength is weak. I haven"t been able to work out or cycle yet, and recovery is very slow. My GBS never ascended higher than my thighs, and for that I am grateful. Feet and hands are still tingly and stiff, however. This is a very odd and frustrating condition for an active 52 year old. But, I am resolved to recover 100%. Currently taking no prescription medication but, wish there was something to relieve the tingle and buzzing. Fight on!

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Comment from: mosaiclife, 25-34 Female (Patient) Published: May 19

My first symptoms of Guillain-Barre syndrome were tingling in my hands and feet, and a weird cold sensation in my mouth, like I"d been chewing mint gum. I went to my general practitioner, who had no clue what was wrong. A few days later I noticed weakness in my legs and fatigue (I was finding it difficult to climb stairs), so I went to the emergency room. They told me to see a neurologist, so I made an appointment. Two days before the appointment I went to another emergency room, and I was admitted to the hospital for high blood pressure (I believe it was 195/100). They did a lumbar puncture and found that there was excessive protein, so they did an MRI of my spine and brain. That"s when they diagnosed me with Guillain-Barre syndrome and began IVIG (that was 4/1/2014). By that point I could hardly walk on my own. I can walk on my own now, but I walk very slowly and struggle with balance. I still can"t climb stairs, and I can"t pick up my toddler son. However, I consider myself incredibly lucky that it was not worse.

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Comment from: worried, 45-54 Male (Caregiver) Published: May 01

My husband was hospitalized for 10 days in 2013 with sudden onset of acute pain to his legs, weakness leading to paralysis (legs), and within hours involving bladder and bowel dysfunction. He was treated with IV steroids as they initially thought he had transverse myelitis. They did not do a spinal tap unfortunately. He was diagnosed by a neurologist a few months later with Guillain-Barre. Now past the 1 year mark he still has significant impairment - severe neuropathic leg(s) pain, urinary/bowel dysfunction (managed with medications), constant (minute) muscle twitching of the arms and legs even when sleeping, impaired balance, depression, altered sense of taste, and memory problems. He is able to work (self-employed) and to walk independently but relies on an electric scooter for long distances, i.e. malls. He"s unable to do many things that he used to enjoy i.e. golf, travel, walking. He"s on Naproxen and the maximum dose of Lyrica. His Cymbalta was recently increased to the maximum as well. I"d be interested to know of any other pain treatment options.

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Comment from: Richard 10, 45-54 Male (Patient) Published: March 07

I must be in the 30% range of those who still have major problems from GBS (Guillain-Barre syndrome). I was diagnosed in February of 2013 and still today am disabled and home bound for the majority of the days. I still have chronic fatigue, tingling, muscle burning, and what I call electric shock. My motor skills are off just a little and my memory is off some as well. I am feeling a little better but still have sick all over feelings from time to time. I hope my story helps those in the 30% not recovering quickly range.

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