Patient Comments: Guillain-Barre Syndrome - Treatment

Question:

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

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.

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!

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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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