Patient Comments: Guillain-Barré syndrome - Symptoms

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

Comment from: Invincible Mom, 55-64 Female (Patient) Published: January 22

Before being diagnosed with Guillain-Barre syndrome (GBS) by a neurologist, I had been experiencing numbness in my feet and calves since about a year after knee surgery. I had received a flu shot when all of a sudden the symptoms became excruciating. I had been told by my orthopedic surgeon that the injections they had given me indicated I had an allergy to egg protein. When my general physician suggested I have a flu shot, I told her about my allergy and her response was 'well, flu shots no longer have egg protein'. I later found out this is incorrect! I sought out the help of a neurologist who after spending an hour prodding, poking and testing, informed me I had a mild chronic case of GBS. That if it became worse, to call him. In the meantime, he prescribed gabapentin to help with the electrical current shocks that were rapid and frequent. After about 3 to 6 months, the shocks have resided and I have returned to my prior state. I continually get numbness in my feet, am tired a lot, chilled a lot, and in general ok. In the meantime, the neurologist would like me to remain on gabapentin to lessen the numbness. The medicines do help alleviate the majority of the pain. For your information, the doctors all state that my condition is not related to my surgery and the neurologist is convinced it is in fact GBS, however he does not want to put me through the pain of a tap. I have been told that if the condition worsens or returns, to seek emergency care as it may be a sign of intensified symptoms and risk.

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Comment from: Krishna, 55-64 (Caregiver) Published: December 30

My father was diagnosed with Guillain-Barre Syndrome on Nov 24 2014. He had diarrhea a week before, when he just came back from a trip. His upper and lower limbs are affected, we were worried that it would spread to the respiratory tract, but luckily it did not. He was given IVIG for 5 days and was in ICU for that duration. He was moved to general room and was monitored for 2 weeks. During these 3 weeks (1 week in the ICU and 2 weeks in the general room), his muscle power started to decrease for first week and showed very minor improvement from then. It's now 5 weeks from the day he was diagnosed and the upper and lower limbs have very minimal power, i.e., he can only move them (slightly) in non-gravity but has zero movement against gravity. Doctors say he should have started recovery from 3rd week which is not the case. He is still doing 3 to 4 hours of physiotherapy daily.

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Comment from: Lolakoi, 65-74 Female (Patient) Published: October 16

I had Guillain-Barre syndrome (GBS) in 1970, when I was 22 (I'm about to turn 67), after a brief respiratory infection. I was trying to move to a new apartment and noticed that the boxes seemed unusually heavy, until finally I couldn't lift an empty cardboard box! The next morning I could barely walk, and it went downhill from there. Within a few days I was on a respirator, totally paralyzed, where I remained for six long weeks. In 1970 GBS was treated with massive doses of prednisone; there was no plasmapheresis or IVIG treatment yet. I was in the hospital for 3 months and a rehabilitation center for another month learning to walk again, and then it took at least two years before I felt close to normal. I lost 50 pounds while ill, until my weight loss was actually more life-threatening than the GBS. Eventually I had a miraculous full recovery and have been very active ever since. However, in the last few years I've had increasing weakness and twitching in my left calf, especially at night. It can feel like a string of ladyfinger firecrackers going off nonstop in my calf. I had nerve conduction tests and there is residual demyelination and some axon damage in the left calf. Sometimes low-dose gabapentin helps, or I just take a Flexeril. I'm still an avid hiker! Overall I'm very grateful that it isn't worse.

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