Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: JoshBee, 19-24 Male (Patient) Published: September 10

I'm 23 years old. I was diagnosed with Guillain-Barre syndrome (GBS) about a year ago September 2014. Day 1 I felt numbness and tingling in my toes, day 2 I had numbness, pain, weakness and back pain, and day 3 I could barely walk. I kept on falling and couldn't get up. The general doctor suggested an MRI and blood work. All came back good. I went to a chiropractor thinking it might be a slipped disc. I was advised to see a neurologist who told me I probably have GBS (which I had no clue back then what that animal is). At my worst stage my hands and legs were weak that I couldn't use them. I had 2 weeks at the hospital, 5 treatments of IVIG and some physical therapy. Then I went to acute rehabilitation for a week. Today, a year later it is still hard to climb stairs, I can't run or jump, but thanks goodness I'm functioning. And to all of my brothers and sisters out there suffering, you will make it through! Stay strong!

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Comment from: DUTCHMAN, 55-64 Male (Patient) Published: August 31

On March 2, 2015 I went to the hospital as I thought I had a stroke (Bell's palsy, shakes, couldn't stand up, aspirating, etc.), and 4-5 days later found it to be Guillain-Barre syndrome (GBS). One week later I felt better but couldn't drive and had the shakes for about 1 or 2 months (5000 mg of B-12 helps daily). Then on July 4, 2015 I had an earache and started going deaf on the left ear, 2 months later it is getting worse.

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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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