Patient Comments: Guillain-Barre Syndrome - Treatment

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

Comment from: Mary, 75 or over Female (Patient) Published: October 29

I received 5 IV immune plasma the first time for Guillain-Barre syndrome in April 2015 and when I had a relapse a month later I had 8 half IV of immune plasma. Since then I have had 7 weeks of life in rehabilitation, 10 weeks day training and now have physiotherapy three times a week. My motor skills are all in place again after not being able to move. I walk small distances alone, am able to do nearly all the housework but seeing double now and then, have the feet and finger tingling, and pain in spurts all over at night. The more tired I am the more pain I have but all in all life is good.

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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: 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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