Patient Comments: Guillain-Barre Syndrome - Treatment

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

Comment from: kevin, 45-54 Male (Patient) Published: May 14

I started getting tingly hands and feet March 2014 and then I developed right side facial muscle droop. I was admitted to hospital, and it was found after lumbar jab that it was Guillain-Barre syndrome with a Miller Fisher variant causing facial droop. I received 5 days of blood immunoglobulins, now in May 2015 I still have chronic fatigue, stiff hands and sensitive feet; also no nerve reflexes which is strange. I am from New Zealand.

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Comment from: Dkb44, 55-64 Female (Patient) Published: March 16

I had a TDAP shot and within 2 weeks, I came down with Guillain-Barre syndrome (GBS). Total nightmare. After six months of GBS, the neurologist finally started IVIG treatment. I don't know if it is helping since he waited so long. I have a new neurologist and she is continuing IVIG treatment.

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Comment from: LarryD, 35-44 Male (Patient) Published: January 20

I had five day course of IVIG for Guillain-Barre syndrome. I was paralyzed from head to toes. My paralysis went from my head down which is opposite of the norm. I also spent 30 days in a rehab just to be able to walk again. My doctors all said that the IVIG treatment was easier and had better results than when they take the plasma out of your body and put it back in.

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

After what I thought was a terrible bout with food-poisoning I continued to have constant pressure in my upper abdomen and severe nausea for 3 weeks. After losing 15 lb. and fearing other gastro issues it suddenly went away and just as quickly my feet and calves became numb with tingling, and then the saddle region within a week! End of the week I was in the emergency room (ER) due to googling cauda equina syndrome which I did not have, thank goodness. Neurologist ordered brain and c-spine MRIs with contrast and radiologist findings were post viral encephalomyelitis or multiple sclerosis. Very strange! Neurologist is diagnosing Guillain-Barre syndrome due to recent viral incident coinciding with numbness but we are keeping an eye on it. Feet, legs from knee down are still numb and it is more painful at night. Constant buzzing from waist down which is more intense after walking/exercise. I am on gabapentin which helps and taking 4600 IU of vitamin D when I found out my level was 32.1! I believe the vitamin D is helping me sleep which is helping with healing process because left foot/leg feels slightly less numb then before.

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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: Wendy C, 45-54 Male (Caregiver) Published: November 07

My brother was diagnosed with Guillain-Barre syndrome (GBS) in February 2012. He had experienced tingling in his legs and had just received the flu shot for a job in a hospital. They started IVIG treatment and physical therapy. He was in the hospital for 3 weeks and then discharged, only to return 3 months later with breathing problems. He fought very hard, however he lost the battle with GBS only 5 months after he was diagnosed. I truly hope more research is being done to help us have more survivors and less deaths to this horrible problem. Thank you and my wishes are with everyone affected from GBS.

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