Patient Comments: Guillain-Barr� Syndrome - Symptoms

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

Comment from: bc, 13-18 Male (Caregiver) Published: July 11

I had just been given contrast dye for an angiogram, gone through the tunnel and immediately felt like I was going to vomit, hot, couldn't breathe, very ill, and confused; it was so quick. Straight away everyone was there putting things in my cannula, steroids, antihistamines, and something else but I was getting worse; just could not breathe and my blood pressure was sky high it was so scary. I was taken into a side room where I was monitored and given more oxygen, and I also heard them mention incubation. It was just awful, I felt like a lorry was on my chest, felt sick and just thought I was going to maybe die. I had had contrast dye many times but this reaction took hours to get me stable and took hours for me to breathe properly again; and they told me it could come back again later. It was a severe allergic reaction to the dye. This episode of anaphylaxis was a few months ago. A few days ago I had a bad reaction to amoxcillin where my stomach bloated out. I felt ill and tight in the chest. I got paramedics to come and he said it was a bad reaction as my blood pressure was so high and said I needed antihistamines which he gave me. At the hospital I had tests and was feeling a bit better, but was kept in accident and emergency to keep an eye on me. They changed my antibiotics and sent me home but next day I had trouble breathing but managed to get through it. I wonder why I had these after taking the stuff many times before. I am still feeling a bit rough but that's the antibiotics.

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