Patient Comments: Guillain-Barre Syndrome - Treatment

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

Comment from: Aloha27, 55-64 Male (Patient) Published: November 20

I was hit with GBS (Guillain-Barre syndrome) in late March 2013. The first symptom I noticed was a sensitivity to sunlight, which I incorrectly attributed to be a side effect of doxycycline, prescribed for a minor upper respiratory infection. Tingling in the toes and legs rapidly progressed to my trunk and I developed severe ataxia in my legs to the point I could not walk or stand. Breathing became more difficult and I could not take a deep breath without difficulty. Paramedics were called and the attending medic radioed ahead to the hospital to give them a heads-up that we were inbound and GBS was suspected. IVIG (intravenous immunoglobulin) was administered within 3 hours of being admitted and I spent two weeks in ICU (intensive care unit) before transfer to the ward. An odd effect of the syndrome is that my sense of taste was pretty much destroyed. Nothing, but noting tasted as it should have. After three weeks in hospital I was transferred to a RCU (recovery care unit) facility where I remained for about 4 weeks. Physiotherapy was begun, my upper body strength and coordination recovered very rapidly and I learned to walk with a walker although I was still dependent on a wheelchair to get around. As my spouse is a paramedic and her sister a nurse, the doctor at the RCU allowed me to be sprung on May 17th. I used the wheelchair until the middle of July, as I had lost over 35 pounds of muscle due to atrophy, mostly in the legs. I'm still using a cane for walks of over 100 meters but my balance has improved. There is still tingling in the toes of both feet. A pronounced foot drop of the left leg appears to be the last symptom I'll have to deal with.

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Comment from: skeet, 35-44 Male (Patient) Published: August 12

The year was 1988. I was 10 years old when I was diagnosed with GBS. I had the flu two weeks prior to being diagnosed with GBS. Everything was fine until I awoke with no leg movement. I didn't feel any tingling or pain anywhere, it just happened. My mother took me to the hospital. That's where I started to lose muscle strength in my hands and arms. It was like my body had shut down. Hours had gone by when all of a sudden I stopped breathing on my own. I was placed in the ICU for two months and later put on the regular floor in the hospital where I started PT and OT therapy. I was in a wheelchair for three and a half years. The hospital gave me steroids as treatment while I was in the hospital and did a plasma exchange. I have about 70% of my muscle strength back. I have back, leg, and hand pain. I walk with a gait. I used to be left-handed, and now I write with my right hand. It's been a long road. I am taking it one day at time. All can say is keep moving.

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Comment from: 1993 GBS, 45-54 Female (Patient) Published: April 14

It started with extreme cold in my feet in July 1993. I had a two year old and a two month old (nursing) baby, I was 25. I had an awful few days of the flu, the middle of June. The next day I struggled to get out of bed. My legs were weak and just didn't feel right. I saw my medical doctor that day who referred me to the neurologist the following day. That morning I couldn't lift myself out of the tub. The neurologist diagnosed me with Guillain Barre syndrome, right away. I had four attempts at a spinal tap by the neurologist in my hospital room, which left me with continued lower back pain. I was admitted to the hospital with IV, for 5 days of 5 bottles each of immunoglobulin. I was nursing my daughter and tried to keep pumping, until the doctor saw how much it was taking out of me to do so, I had to stop. I was unable to walk and went through therapy to gain strength back. Stairs were very hard and getting up off the floor. I was even unable to flick a cotton ball across a table. I did not experience any respiratory trouble. I was hospitalized for two weeks. To this day I still have numbness and tingling in my fingertips, left leg is weaker and when I get tired after activity my left foot still drops. I have trouble balancing back on my heels and steps still bother. Buttons and finding something at the bottom of my purse is hard. To this day I have not or will not get a flu shot.

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Comment from: 35-44 Female (Patient) Published: October 31

I was diagnosed with GBS (Guillain-Barre syndrome) in Nov 2012. It started with tingling and numbness in my feet and progressed to weakness in my legs within 2 days. I went to the doctor when I was unable to climb the stairs in my house. Luckily the doctor knew immediately what was going on and sent me to the emergency room. I spent 2 months in hospitals and another 2 months in outpatient physical and occupational therapy. I have returned to work and most of my normal activities but still have tingling in my hands, pain in my legs and some overall weakness.

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Comment from: Soldier, 45-54 Male (Patient) Published: July 17

In late winter 1991 I had a cold that would not leave. Being on active duty with the Army I continued to work. In early spring 1991 I noticed numbness in both feet & hands. Was placed in Madigan Army Med Ctr for tests & observation. After 10 days I was released even though I had transit pain in back and the numbness was creeping up limbs and arms. Was told maybe I had eaten the wrong type mushrooms. Pain increased until I went to the ER at Madigan (MAMC) & was admitted. A nightmare continued there until finally an outside MD was brought in & pronounced what I had, The treatment I received at MAMC was horrible & the care was almost none. Several MDs said I had the following: Cancer (would die soon), big time drug use that had caught up with me, crazy, PMR, and just faking it to get out of work. Had almost 30 yrs in Army then & was A Sergeant Major (E9) so that really set me off. Finally released in the fall of 1991 with really no follow-up on MAMC's part. Retired in 1992 & continued to be bothered by post Guillian-Barre after effects. Very depressed when & while in hospital. Would wish this on no one and feel Madigan's care & treatment of this severe disorder was criminal.

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