Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: Elena, 45-54 Female (Patient) Published: January 28

It was the day before New Year's Eve 2013, I noticed on my drive into work that I had severe pain in my knees, then by lunchtime I had numbness in my fingers and feet. I work in a medical office so I went for bloodwork that afternoon. The next morning when I went to get out of bed I could not walk. I called my boss crying and he said to call an ambulance immediately. By the time I got to the emergency room I could not walk at all and within a couple hours I could not swallow. I ended up intubated with a feeding tube, and in the ICU where I was given IVIG (intravenous immunoglobulin) treatment. I continued to decline and was then transferred to a bigger hospital out of town. I had severe back pain and was paralyzed from the neck down. When I got to the bigger hospital I was given a second treatment of IVIG. I was so out of it I was having severe, horrible hallucinations and could not speak to tell anyone what was going on. I remember hardly anything of my first month in the hospital but unfortunately I remember the hallucinations. I had to learn to swallow again; once I could swallow, I was allowed to eat real food. Shortly after that my tracheostomy was taken out. Slowly I began to regain use of my arms but still could not move my lower half. Once I got my mind back I requested to be sent back to my hometown for rehabilitation. Two days later I was there. I began walking with a rolling walker after a couple days there, then a couple days later I began walking with a regular walker. I was so excited to be on my feet! Don't get me wrong, I had to work hard at physiotherapy (PT) to get there! After 2 weeks I was released to do outpatient PT. So it was a total of 6 weeks in the hospital. They were not sure if I was going to live in the beginning but now I am back to my normal life. I do still have numbness in my feet and hands and lose my balance easily but I am glad to be where I am. Still not sure what caused my Guillain-Barre syndrome; I did have a flu shot 6 weeks prior to all this and I was not sick prior to the symptoms starting.

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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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