Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: Melony, 35-44 Female (Patient) Published: September 26

At 20 years of age I had a sinus infection, had weakness throughout my body, numbness, and tingling in my hands and feet. I went to the doctor only to find that I had no reflexes. He contacted a neurologist who told him I needed to get to the emergency room (ER) immediately. The night before I was taken by ambulance to the ER and after several tests I was told it was muscular, given 2 muscle relaxers, and sent home. When I was admitted to the hospital I stayed in ICU for 3 weeks, was paralyzed for that long, I was put on a ventilator and feeding tube for this amount of time. I had Guillain-Barre syndrome (GBS) again in 2009 only not as severe. In 2000 I was told the reason I have trouble breathing is because one of my vocal cords was paralyzed from the ventilator being in too long. I've had a total of 5 surgeries to widen my airway and now I still get winded and light headed while talking for long periods of time. I was told that my pulmonologist had my ventilator in too long and that I should've been given tracheostomy.

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Comment from: alabeaty, 45-54 Female (Patient) Published: September 05

I had flu/food poisoning to 3 weeks of nausea and upper abdomen pressure to stomach feeling fine and immediately numb/tingling feet, then calves, then knees then saddle region! Not cauda equina but it freaked me out. Brain and c-spine showed spinal lesions from post viral encephalomyelitis or multiple sclerosis. Neurologist is diagnosing Guillain-Barre syndrome due to recent viral incident coinciding with numbness but we are keeping an eye on it. Constant buzzing from waist down is annoying. I have weakness in legs and severe fatigue. I am taking gabapentin and GNC green vegetarian pack and extra vitamin D, 4600 UI a day now for a couple of weeks. My D level was 32.1. I am sleeping much better now which is very surprising. I think it is helping immune system and ongoing healing of nerves/spine. Left foot and leg are a little less numb. Legs in general are feeling a little stronger going up stairs. Buzzing continues.

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Comment from: Ruthann, 65-74 Female (Patient) Published: June 02

In October of 2012 I woke up in the middle of the night with feet and hands that were numb and hurt at the same time. I could not walk. Thinking that I may be having a stroke, we went to the emergency room. One of the first questions I was asked was if I had had a flu shot. My answer was yes. Within a few days and after several tests I was diagnosed with Guillain-Barre syndrome (GBS). By that time I could not talk, or swallow, or breathe on my own. I was in the ICU for 3 weeks, on a ventilator, and feeding tube. I slowly began to recover. The left side of my face also was paralyzed. I spent 3 months in the hospital. I needed to learn how to swallow again, and eventually how to walk. It has been 19 months since I first became ill, I am able to get around with a cane or walker, extreme fatigue is part of every day, and numb tingling painful feet are what I am still experiencing. I am grateful for the amount of recovery that I have had, because I was not expected to live.

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Comment from: stokkecity, 45-54 Male (Patient) Published: May 30

I am currently recovering from Guillain-Barre syndrome (GBS). I"m a very healthy cyclist and fitness enthusiast who was convinced to take a flu shot in February of 2014. My first symptoms were a slight tingling in my fingertips and toes on March 8th, and by the end of the month, I could no longer stand up and bear weight on my legs. I spent 2 weeks in the hospital receiving plasmapheresis, and left the hospital in early April feeling strong. After three weeks, I had a relapse which landed me back in the hospital for two nights and a schedule of 6 out-patient IVIG treatments. It"s now nearly June of 2014. My walking is good, but my hand and arm strength is weak. I haven"t been able to work out or cycle yet, and recovery is very slow. My GBS never ascended higher than my thighs, and for that I am grateful. Feet and hands are still tingly and stiff, however. This is a very odd and frustrating condition for an active 52 year old. But, I am resolved to recover 100%. Currently taking no prescription medication but, wish there was something to relieve the tingle and buzzing. Fight on!

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Comment from: mosaiclife, 25-34 Female (Patient) Published: May 19

My first symptoms of Guillain-Barre syndrome were tingling in my hands and feet, and a weird cold sensation in my mouth, like I"d been chewing mint gum. I went to my general practitioner, who had no clue what was wrong. A few days later I noticed weakness in my legs and fatigue (I was finding it difficult to climb stairs), so I went to the emergency room. They told me to see a neurologist, so I made an appointment. Two days before the appointment I went to another emergency room, and I was admitted to the hospital for high blood pressure (I believe it was 195/100). They did a lumbar puncture and found that there was excessive protein, so they did an MRI of my spine and brain. That"s when they diagnosed me with Guillain-Barre syndrome and began IVIG (that was 4/1/2014). By that point I could hardly walk on my own. I can walk on my own now, but I walk very slowly and struggle with balance. I still can"t climb stairs, and I can"t pick up my toddler son. However, I consider myself incredibly lucky that it was not worse.

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