Patient Comments: Guillain-Barr� Syndrome - Symptoms

What symptoms did you experience with Guillain-Barr� syndrome?

Comment from: tom, 45-54 Male (Patient) Published: March 23

I was diagnosed with Guillain-Barre syndrome (GBS) in 2015 after I couldn't breathe and had pins and needles pain in my legs and feet. I then started to go paralyzed waist down. I was admitted to the hospital for 5 weeks I too had IVGG, and since then I still fall trying to walk. My arms and face twitch, the pain in my spine is unbearable, and no amount of painkillers or gels help. I can't raise my leg to climb into the bath. Then 2 months ago I had another bout of GBS, this time in my face and arms which were paralyzed. I have trouble not knowing if I need to go to the toilet as there is numbness, and no feeling below. I live locked in my room in constant pain scared of falling. My partner told me I need some exercise and fresh air and I went so far outside I fell over after losing my balance. This GBS affects and has different meanings to people; some recover and some have long term problems like I have.

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Comment from: chainus, 19-24 Female (Patient) Published: November 10

I was diagnosed as a Guillain-Barre syndrome patient at the age of 19 on June 20, 2016. I was shocked when I experienced this kind of disorder. At first I was confined as a dengue patient but after I was discharged from hospital I felt numbness and tingling sensation, I couldn't feel my feet, and had hard breathing and chest pain weeks after I was discharged. Thank goodness that I survived it and now I have my second life given to me. I am 20 years old now and I can say by the support of my family and friends I overcame my illness.

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Comment from: Silverleaf Guy, 45-54 Male (Patient) Published: November 07

My symptoms with Guillain-Barre syndrome came on after an infection. My toes became numb as well as my chest and stomach area. One night I woke up and told my wife I could not breathe. After a battery of tests at the emergency room and conclusively determined by a lumbar puncture I was diagnosed with Guillain-Barre. I had 5 days of IVIG and within a week I was home. It is now 30 days and my back pain has passed but I still have finger and stomach numbness. What really helped me was forcing myself to walk up to 60 minutes a day. I am hoping within the next 30 days the numbness in my torso goes away.

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Comment from: evagay, 65-74 Female (Patient) Published: September 06

I had a stomach flu for a week. The day after I was feeling better, but I had pain around both ankles. That was on a Saturday night. On Sunday they still hurt bad enough that I went to Urgent Care where I was diagnosed with neuropathy. I was put on gabapentin. I woke up on Tuesday, got up and almost fell down. My legs, mainly my right one, felt like rubber. I told my husband we had to go to the hospital. The neurologist confirmed my worst fear; Guillain-Barre syndrome. I consider myself very fortunate. My feet, legs, arms and hands are involved. It could be worse. I had 5 treatments of IVGG (intravenous gamma globulin). I had 1 week in the hospital and 2 weeks in rehabilitation. I am on day 41. I still have nerve pain in my fingertips. But I can walk with a walker. I am taking physiotherapy. I tire easy, but I will make a full recovery, I am determined. So will you!

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Comment from: Loveless4756, 35-44 Female (Patient) Published: June 24

For my broken jaw they placed four screws in my gum line, two screws on the top, and two on the bottom. Afterwards they put rubber bands on the screws to help guide my bite and help it heal correctly.

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Comment from: DKL, 55-64 Female (Patient) Published: December 21

I had Guillain-Barre syndrome 40 years ago. I had it in the 1970s and am now having weakness.

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Comment from: Jane Doe, 45-54 Female (Patient) Published: May 06

I had a terrible flu that I caught from my husband. It took me about two weeks to get better. I had one day of feeling normal. The next day I woke up and there was a feeling of pins and needles in my finger tips and the tops of my feet. It spread up my fingers and feet during the day and I noticed it was harder to climb the stairs. I was very tired. I knew about Guillain-Barre syndrome (GBS) and googled the symptoms and disease. It scared me as I had all the symptoms. By the end of the day I was having trouble standing up. I called Accident and Emergency and was told it was probably flu residuals. I went to bed. The next day, I woke up and could not stand up or move my legs. I went to the hospital in an ambulance. I got really lucky and the first doctor to treat me diagnosed me with GBS. I found out later they had 3 other cases of GBS currently in the hospital. They started me on IVIG right away. It progressed up my arms and legs until I was fully paralyzed. I could not urinate or defecate. A catheter was inserted, and was not removed for about a 3.5 weeks. It hit my breathing and my autonomic nervous system. I had to be put on a ventilator. My blood pressure sky rocketed, and my heart began to fail. I experienced extreme hallucinations when I closed my eyes. My feet and lower legs felt like they were in a vice. After about 5 days of pure agony, I began to be able to move my feet again and my right arm. Slowly, movement came back. I was taken off the ventilator after 9 days on it. I was sent down to a ward, where strength slowly returned to my arms, hand, and legs. Eventually I was able to move myself around the bed with my arms, I could text on my cell phone. Then I got a urinary tract infection from the catheter. It was removed, and I was put on IV antibiotics. Either I had an allergic reaction to the antibiotics or my GBS flared up again, but my hands got weaker again. After a few horrifying days in which they thought my GBS was returning, it reversed again. I was eventually discharged to physiotherapy two days after I did my first wobbly tottering stroll with a Zimmer frame around the ward. In physiotherapy, I was able to walk with a cane, climb stairs, stand up from a chair, and on my last day there I walked 3 unassisted steps. On the three month anniversary of my GBS, I saw my neurologist. My reflexes have fully returned. I can walk normally, do squats, jump, and run. There is still some numbness in my ankles and shins, and intermittent numbness in my skin. I also fatigue easily.

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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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