Patient Comments: Guillain-Barré syndrome - Symptoms

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

Comment from: Mohamad Abbas, 45-54 Male (Patient) Published: August 27

Sense of Guillain-Barre syndrome began on August 30, 1997. It was a Wednesday and suddenly I felt weak in the legs and on Sunday I was starting to feel numbness in hands. I entered the hospital on Monday and stayed a week. I arrived to the point of paralysis and after I came out of the hospital began to improve. Today I went to the doctor and had examination of my nerves. I am still feeling the weakness in my left leg and my colleagues are noticing that laming is more than before. Thankfully no pain, but I have weakness.

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Comment from: Fern, 55-64 Male (Caregiver) Published: July 13

I woke up one morning with one leg feeling slightly tingly. As time went on my leg got heavier, and then progressed to my other leg and then up to my abdomen. It took 1 week to get to that point. My both legs felt very heavy with not much control. I needed a cane to walk. I have seen a neurologist and after 3 MRIs and another specialist I was never diagnosed. I was 47 years old at the time and now at 64 I found out about Guillain-Barre syndrome. My neighbor contacted the syndrome and was diagnosed in 2 days. It was no doubt very similar symptoms to what I had. My ordeal lasted 4 months with little symptoms left. I was very lucky.

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Comment from: Sgt2Dog, 55-64 Male (Patient) Published: June 04

I woke up paralyzed, unable to talk or move. I spent a little over 2 weeks in ICU. One year later I'm extremely tired, both hands and feet hurt, and I'm just learning to walk again, but fell 4 times in the last 3 months, breaking ribs and tearing my arms up. I'm 63 now, and very scared that I will have a relapse of the Guillain-Barre syndrome. I take gabapentin (you and your doctor will need to work together to determine the best dose for your needs) for the pain in my legs and hands, it does not take it a 100 percent away, but I can manage it most of the time.

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Comment from: Bondo, 55-64 Male (Patient) Published: April 28

I awoke on my birthday with a very sore neck, and I made an appointment to see a chiropractor. By the time I got there, I was suffering from severe shoulder pain, weakness in arm, tingling in 4th and 5th fingers, and loss of grip. Doctor thought I was having a heart attack (I didn't think this). I spent 3 days in hospital, cleared of any heart issue. The hospital sent me home in excruciating pain. I made an appointment with and orthopedic doctor. He ordered an EMG test. The neurologist did not tell me what was going on, he wanted me to check back in with the orthopedic doctor, said I probably have cervical radiculopathy. Three weeks later, spine doctor said I have thoracic outlet syndrome. I had enough of the guessing and in extreme pain went to another clinic and the doctors there admitted me to the hospital immediately. Within 20 hours I was diagnosed with Guillain-Barre syndrome (GBS). I was put on 5 treatments of IVIG, and on the day after treatment the nerve pain started to subside. Now 1 month later I am still weak in the arms and fatigue easily. I exercise regularly. I can't understand why the neurologist's warning flag didn't appear, my EMG test was so bad he should have had me admitted to the hospital immediately. A lot of damage was caused over 2 1/2 months of misdiagnoses.

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Comment from: Elena, 45-54 Female (Patient) Published: January 28

It was the day before New Year's Eve 2013, I noticed on my drive into work that I had severe pain in my knees, then by lunchtime I had numbness in my fingers and feet. I work in a medical office so I went for bloodwork that afternoon. The next morning when I went to get out of bed I could not walk. I called my boss crying and he said to call an ambulance immediately. By the time I got to the emergency room I could not walk at all and within a couple hours I could not swallow. I ended up intubated with a feeding tube, and in the ICU where I was given IVIG (intravenous immunoglobulin) treatment. I continued to decline and was then transferred to a bigger hospital out of town. I had severe back pain and was paralyzed from the neck down. When I got to the bigger hospital I was given a second treatment of IVIG. I was so out of it I was having severe, horrible hallucinations and could not speak to tell anyone what was going on. I remember hardly anything of my first month in the hospital but unfortunately I remember the hallucinations. I had to learn to swallow again; once I could swallow, I was allowed to eat real food. Shortly after that my tracheostomy was taken out. Slowly I began to regain use of my arms but still could not move my lower half. Once I got my mind back I requested to be sent back to my hometown for rehabilitation. Two days later I was there. I began walking with a rolling walker after a couple days there, then a couple days later I began walking with a regular walker. I was so excited to be on my feet! Don't get me wrong, I had to work hard at physiotherapy (PT) to get there! After 2 weeks I was released to do outpatient PT. So it was a total of 6 weeks in the hospital. They were not sure if I was going to live in the beginning but now I am back to my normal life. I do still have numbness in my feet and hands and lose my balance easily but I am glad to be where I am. Still not sure what caused my Guillain-Barre syndrome; I did have a flu shot 6 weeks prior to all this and I was not sick prior to the symptoms starting.

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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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