Patient Comments: Guillain-Barre Syndrome - Treatment

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

Comment from: Beagie, 45-54 Female (Patient) Published: August 10

I was diagnosed with Guillain-Barre syndrome (GBS) on 6/10/17. I went into the emergency room because I could not walk. I had an hour long MRI of my spine, 1/2 hour MRI of my brain, spinal tap, bone marrow, and countless blood work. I had 6 immunoglobulin IVIG treatments, was in the hospital for 12 days, and went home on steroids. Recovery is slow, I am in physiotherapy. I cannot walk upstairs, and cannot drive (knees and thighs still numb). I lose my balance, hands cramp up, just washing dishes or writing. Happy I can walk without a walker now, but am unsteady at times.

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Comment from: kerri17, 55-64 Female (Patient) Published: January 19

I would love to connect with persons who have had Guillain-Barre syndrome (GBS) in the 1970s. I had it in 1974 when I was 12 years old. I am having a difficult time with my knees and the only treatment I had was physical and occupational therapy for 8 years. I have poor and weak calf and ankle muscles, and walk with gait and limp. I am needing cane more and falling a lot!

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Comment from: vickie324, 55-64 Female (Patient) Published: September 30

It is interesting to read how so many people are originally misdiagnosed before getting the correct diagnosis of Guillain-Barre syndrome (GBS). I entered the hospital on May 30, 2016 for what I thought was Levaquin toxicity. I had tingling in my hands and feet, was feeling very unsteady and could not walk unaided. I had extreme pain in my legs. They gave me steroids and pain medications and sent me home (with a walker) after a week, saying I should start getting better. I guess they decided my idea of the Levaquin toxicity was correct; they didn't do a spinal tap. After two days at home I was so weak I could not stand without help. I was using a walker, but even that got to be too difficult. I went by ambulance to another hospital 5 days after I left the first hospital. By now I could not walk or stand, could not move my legs at all. Pain was extreme, and there was a band of pain and pressure around my diaphragm that nothing could help (felt like a tight belt). I am lucky that they finally diagnosed GBS and I was given IVIG (5 treatments) and I did not get to the point that I needed a respirator. I was in the hospital over a month, which included about 10 days of rehabilitation. I left in a wheelchair, but after 2 months of outpatient rehab, I can now walk normally. I still have pain in abdomen so continue to take gabapentin. I was glad to read that others have fatigue; I thought it was just me (I think I got GBS either from a sinus surgery in April, or from the continuous sinus infections I had for months). Never knew anything like this could happen. Good luck to everyone out there! We will recover!

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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: RMED, 75 or over Female (Patient) Published: June 22

It has been 3 months since I was diagnosed with Miller Fisher syndrome, a variant of Guillain-Barre syndrome. I am fortunate in that all symptoms are gone. I am now on several new medications since my hospitalization. One is Synthroid. I itch everywhere! Sometime, my back actually hurts. I am wondering if it is the thyroid medicine or a neuropathy from the Miller Fisher.

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