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Guillain-Barre Syndrome is Rare, Devastating


As news circulates about Luci Baines Johnson, youngest daughter of former president Lyndon Johnson, being treated at the Mayo Clinic for suspected Guillain-Barre syndrome, one wishes her well and also wonders, what is Guillain-Barre syndrome? What do we know about this rare disease?

This autoimmune disorder affects about 1 person in 100,000, according to the National Institute of Neurological Disorders and Stroke. Guillain-Barre syndrome, which is also known as acute inflammatory demyelinating polyneuropathy, is an inflammatory disorder of the peripheral nerves, which are the nerves that transport sensory information (e.g., temperature, pain) from the body to the brain, and motor messages from the brain to the body.

Individuals who have Guillain-Barre syndrome experience weakness and numbness or tingling in their arms and legs, and may also lose the ability to move and/or feel their legs, arms, upper body, and face, and experience severe breathing problems that can require mechanical assistance. Guillain-Barre syndrome is the most common cause of rapidly acquired paralysis in the United States, according to the GBS/CIDP Foundation International.

One of the most distressing features of the syndrome is that symptoms appear suddenly and unexpectedly. In fact, most people reach their weakest point in the course of the disease within the first two weeks after symptoms first appear, and by the third week, 90 percent of patients are at their weakest point.

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Although patients can recover within a few weeks, some do not regain their strength and full sensation for several years. About 30 percent of people with Guillain-Barre still have some weakness three years after onset of the syndrome. About 3 percent of patients experience a relapse of muscle weakness and tingling sensations years after their first attack.

The good news is that the majority of patients recover from the syndrome, even those who experience the most severe symptoms, although minor weakness and loss of sensation may remain. In a small number of cases, individuals remain wheelchair-bound indefinitely. The mortality rate is 3 to 4 percent.

Guillain-Barre syndrome was in the news recently, associated with H1N1 vaccinations. Some people expressed concern that the vaccines may cause Guillain-Barre, as there was an outbreak of the syndrome back in 1974-75 among soldiers at Fort Dix, New Jersey, after they received the swine flu vaccinations.

Because progression of Guillain-Barre is unpredictable, most patients are hospitalized immediately and placed in intensive care to monitor their breathing and other body functions, according to GBS/CIDP Foundation International. Most patients need rehabilitation once they leave the hospital to help them regain use of their muscles as nerve supply returns.

The cause of Guillain-Barre is unknown. About 50 percent of cases occur after an individual has had a viral or bacterial infection. For more information about Guillain-Barre syndrome, the GBS/CIDP Foundation International is an excellent resource.

GBS/CIDP Foundation International
National Institute of Neurological Disorders and Stroke



I had GBS in February of 2008. I was paralyzed from the waist down and spent the next six months learning to walk again. i am now 76 years old. Lungs just started giving me problems, but I don't know if this is a continuation of GBS or not.
I had GBS over the Christmas/New Year of 1989/90. I was fortunate to only be hospitalised for 1 week, but it was the scariest week of my life. Doctors were pricking the soles of my feet and drawing blood. I know I was lucky and I wouldn't want anyone to suffer, but the profile of this illness needs to be raised.
I so agree. I came down with GBS July 19, 2016. spent one week in the hospital. blood tests, pin pricks, lumbar puncture, IVIG infusion for 5 days.. then 2 weeks in rehab.. Not much information. What I learned about GBS i learned on my on. I knew somebody who had it years ago, so thought that was what I had when I came into the hospital. Learned more about it on Google while in rehab. Too sick and could not use my hands or arms while in the hospital.. Wish I could find a support group in the Portland Or. area.. very frustrating feeling like you are going thru this alone.. Legs are still weak, balance is still not good. I tire very easy.. I know I am complaining. I am sorry.. This has been a hard week for me.. Yes there needs to be more awareness about this. . when I tell people what is wrong with me, they say, "what is that?" .....
This is indeed a terrible disease. I came down with it on May 13th 2009 and was completely paralyzed except for the blinking of my eyes within two days. However, I retained full sensation of pain and sensitivity. Recovery has been slow but it is still progress. It is a terrible feeling to be trapped within your own body and cannot express anything. Since then, I have had to relearn how to eat, swallow, talk, breathe and now regain strength in every muscle. I still do not have fine motor skills in my hands, my toes are still not moving and I not yet able to stand but it will return. I wish to tell everyone to not give up and be patient. I know how hard it is and how long of a road lies before me.
It sounds like my son. Its been two years he did notwalk fora year and a half and he can not write yet. Fine motor is hard...Please give me details. The doctors here in Houston said it was not Guillian Barre...
Prayers and hopes that you have recovered fully. My father was hospitalized for nearly a year in 1974-75, back when they didn't know much about this disease. He was only able to blink his eyes and move 1 big toe. I was a child of 5, at the time but we used a board with his favorite sayings, and the alphabet on it, to communicate with him. He would blink his eyes or ring a small brass bell attached to his big toe, to communicate!! Sadly, he choked on the respirator when they were weening him off. He died at the age of 52! I often wonder how our lives would have been different if he would have recovered. I missed out on really knowing him! Keep fighting for your loved ones, as well as yourself! You may not be the same as you were but you now know what a fighter you are! Wishing you many blessings and happiness:)
GBS struck me down last March (2009), apparently triggered by jabs for tetanus, typhoid and hep A. I lost feeling and strength, and then fell, so got whisked into casualty with a suspected broken leg - which I couldn't feel! To cut a long story short. I spent three months recovering in hospital, then six more months in rehab at home. It truly is a terrible condition, so hard to describe the tingling and other extreme sensations. From being unable to move. I can now wobble around, with just a stick for support, and although I now have some feeling in my hands and feet, I still have llittle sense of where my limbs are, so I fall out of bed, and cannot use escalators or lifts without supervision. But I am so pleased to have some control over my body again. Just to be able to sit up in bed, or to wiggle my toes, or reach up to comb my hair - these seem such small things, but each time I do them I am so proud of myself. It truly is a scary thing to be trapped inside your body, but it is remarkable that the body can heal and restore itself. It may take a while, and may not be full recovery, but it seems that the overwhelming majority of sufferers make good progress.
My dad got the syndrome over two weeks ago, after the first week he improved by getting his breathing tube out, and slowly everyday being able to move a little more. But, last Friday he finally started his first day of rehab and right before he was about to start his workout he stopped breathing again. The doctors say it happened because he had a urinary track infection which caused it, but since that happened he's not only back to the start with the breathing tube and being completely paralyzed, but his condition is worse than before and its affecting his cranium now. There were about 20 people who rushed into the room and told my family they had never expected that to happen. Has anyone who thas experienced this syndrome or know of anyone who has had a relapse like his? This time instead of slowly getting better he's getting worse everyday and I never hear of stories when it happens twice to people and how long it was to recover for them. PLEASE let me know, I am stuck at school 3 hours from home and really concerned about my father.
My daughter started hurting in her back very quickly. We took her to the emergency room. Left there being told it was from a urinary tract infection. within a few hours the pain was so severe in her back that she could not move or walk. they admitted her to the local hospital where she lost use in her legs, feet, arms and neck. they diagnosed her with GBS. When her breathing became difficult, we call the family in for lots and lots of prayer. She had lost her vision by then also. They transported her to Vanderbilt Hospital at that time. Once we were here that did not think it was GBS because her reflexes were good and her back pain was to severe. They still cant find any medical reason for all this. She is slowly recovering. Her vision has come back and the use of her neck and arms. we start physical therapy today. She is only 18 and very athletic. So we are hoping for a quick and short recovery. This has been the scariest thing we have ever been through. Does anyone have any advise?
hello, my name is conner and i am 16 years old and i am doing a research report on guillain barre syndrom for my honors english class. i stumbled across this website and saw your comment about your daughter and i too was diagnosed with GBS a few days before my seventh birthday. in fact i was in childrens hospital unable to move the lower half of my body on my actual birthday. i know your post was about a year ago but i hope your daughter has done very well and is back to doing the things she loves.
My husband was misdiagnosed for a month it will be three years July 30th when he first got sick. My husband woke up with memory loss and slurring his speech I took him to the er thinking it was a stroke, it did not. They claimed he had Aspasia I didn't believe I felt strongly in my heart it was something else I just didn't know what. My in law's friend did some research and came up with GBS. The second trip to the er he couldn't walk and was paralyze waist down still suffered the memory loss and slurring speech, he know what he wanted to say but couldn't say it. They sent him home with a wheel chair and walker saying it's all in my husband head. We meet with a neurologist and asked him to check for GBS. That neurologist said it was all in my husband's head, I told the neurologist nope it isn't in his freaking head. I was getting mad about it, I was watching my husband dying right in front of me. August 30, 2012 my husband meet with one more neurologist. This one I didn't mention about GBS, he just looked over the paper work that I had, and looked over my husband and told us he needs to be in the hospital now, he was diagnosed with GBS. My husband's bladder took a hit he had the supra pubic cathered placed it. He started recovering slowly, my still suffer long and short term memory. My husband can walk short distance everything else in the wheel chair for long distance. The memory problem is still there. They are saying it's in my husband's head but it doesn't make no sense and I don't think he does. I am doing research to see who else has suffered memory loss long or short term or both with GBS. We have a new neurologist now he has done a lot of mri on my husband. They did the nerve testing on his legs and feet. They had him go see about dementia or any other thing. Which that woman called my husband a liar, cause when he filled out his paper work he copied it from his driver liences, is where we think she thinks he was lying cause she asked him about his birthday and address. He couldn't remember it cause he didn't know. I know it's not in my husband's head this one doctor told us which is physic doctor that he has some sort of demention going on. I am his wife and it has been tough the last three years, it's hard when sometimes he doesn't know who I am please if any of you has had GBS/ with memory loss short or long or both please let me know
I have had memory loss.. One time i went to write my last name and could not spell it.. I have been married for 52 years. I know how to spell my name !!! My friend was there and had to spell it for me.. There have been other times I have forgotten things as well., I have been researching memory loss with GBS. I have found there are others who have experienced this as well.. Now it isnt permanent. I can spell my last name, It just comes and goes at times.. I hope this helps you.. I do hope your husband has gotten better... I have only been down with this for six months and I am so ready to be done with it !!!!
I am 22 years old. I was diagnosed with GBS when I was 20 years old. I have now been experiencing both short and long term memory loss. I am unable to remember basic things like my phone number and passwords at times. I am unable to take instructions long term. I am worried.