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: Roger, 55-64 Male (Patient) Published: September 18

I was born in 1956, and got Guillain-Barre syndrome (GBS) in December of 1985. I got up one morning getting ready for work, made coffee, set down and had a couple of cups, then tried to get up from the chair, and I could not get up. My legs were very weak and finally I pushed myself off the table, and staggering to my car, I got in it and drove to work. I had about 15 minutes' drive, I got there and that was it. I could not get out of the car. My friend there called 911. In 30 minutes I lost all feelings in both legs, then the tingling started in the waist up to both arms; also felt painful and creeping. I was in a lot of pain, and the doctor gave Tylenol and aspirin. I was in ICU for 3 weeks, you know I felt whatever I had, just stop the tingling and creeping. Then it got to my neck and then my whole body was paralyzed for a period of 3 to 4 weeks. When finally I was able to get therapy, my body was curled, my knees were touching my elbows. I was bedridden for almost 3 to 5 years. I had spinal manipulation (SM) therapy, till I was put on wheel chair for another 6 years. I was taken to 2 rehabilitation centers and was told I will never walk again, but with a lot of therapy slowly stood up to walk. In 2011 I had my first back surgery, and then 8 months later I had major surgery on my back again.

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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: bigbird, 45-54 Female (Patient) Published: May 21

Looking back, when my symptoms started I just assumed I was cold - working on a loading dock in winter. I feel extremely fortunate to have been very athletic my whole life so my muscles had "memory" to rebound to. My main remaining issues are severe lower back pain (OTC relievers have not worked, so I stopped using them and do not want anything stronger) with some balance issues especially when exhausted. Oh, and the weight gain from the antidepressants I was prescribed. This is the heaviest I"ve ever been by far. I have an elevated workout bench so I don"t have to fight with the floor.

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