Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

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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Comment from: blessed, 55-64 Female (Patient) Published: February 28

I am a patient who is being treated for Guillain-Barre syndrome. My first symptoms were tingling hands and feet and weakness in my legs. I went to the emergency room and they sent me home saying I was having a drug reaction to a medicine that my doctor had given me. The next morning I could not walk. I went back to the ER at a different hospital and was immediately told they thought I had Guillain-Barre and began treatment for this. They said Guillain does not necessarily show up in the first testing but will show up in the second. I was treated by taking out spinal fluid and given plasma over a course of 5 days. I had severe back pain with this illness, loss of leg function, and numbness below my arms. My arms were affected by limited movement. Also numbness in my face and mouth as if I had been given a Novacaine shot from the dentist. Luckily I began recovery rather quickly, full movement of my arms began about 3 days after treatment. I am 5 weeks into my diagnosis and I can walk without a walker. I have tingling in my fingers and feet still but feel like I am on a great road to recovery thanks to my doctors and my therapists. I do get tired quickly after workouts but feel that after more time this will improve.

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Comment from: 55-64 Female (Patient) Published: February 07

I was diagnosed with GBS (Guillain-Barre syndrome) in April 2013 after having a sinus infection. I had had tingling in my feet for several weeks but ignored it. My symptoms began with a slower gait and a feeling of tiredness. The following morning I awoke with tingling over my entire body and loss of muscle control. I was paralyzed over my entire body. I was in ICU for 27 days and rehabilitation for 15 days, plus an additional 8 weeks of outpatient rehab. I received 7 immunoglobulin treatments, osteotherapy and physiotherapy. I had a tracheostomy and a feeding tube. I still experience tingling in my hands and feet and deal with fatigue daily. I am learning to be more patient!

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Comment from: RMForbes, 55-64 Male (Patient) Published: January 31

I have minor double vision, tingling in the feet and hands most noticeable at the toes and tips of the fingers. I also have problems walking because I can't balance myself. I got out of the Veteran Affairs hospital just two days ago. I was diagnosed with the Miller-Fisher variant of Guillain-Barre syndrome.

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Comment from: Steve, 75 or over Male (Patient) Published: January 27

I am a retired gynecologist. A number of weeks after a flu vaccine I awoke at 2 AM with severe low mid back pain. By 6:00 AM I called 911 thinking that I had a posterior wall infarct. Cardiac workup was normal so I was discharged home with nurses for three days then I had rehabilitation and assisted living for three months. I also had numbness and tingling of the hands and feet as well as progressive leg and arm weakness and paralysis. Misdiagnosed for 7 weeks with no help from pain medicine, I needed a wheelchair. My family was told that I had dementia and arthritis (no previous history of either). Finally I saw a neurologist who made the diagnosis of Guillain-Barre syndrome. Of course I was finally getting better by then. (Nov 2011 - Feb 2012). I should mention that Medicare did not cover anything since I was only in the hospital for 2 days under "observation" Now two years later, I have had a three week history of unilateral, unexplained arm and leg muscle weakness and pain which I suspect is secondary to the statin, Lipitor.

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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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