Patient Comments: Guillain-Barré syndrome - Symptoms

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

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