Guillain-Barré syndrome 

Introduction 

You may need to stay in hospital for several weeks or months if you have Guillain-Barré syndrome 

Who is affected by Guillain-Barré syndrome?

Guillain-Barré syndrome is rare, affecting about 1,200 people in the UK every year.

The condition affects slightly more men than women and can occur at any age, including during childhood. However, it is most common in adults who are 30-50 years of age.

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Guillain-Barré (pronounced ghee-lan bar-ray) syndrome is a rare and serious condition of the peripheral nervous system. It occurs when the body's immune system attacks part of the nervous system.

The exact cause of Guillain-Barré syndrome is unknown. However, most people (around 60%) develop the condition shortly after having a viral or bacterial infection. It is thought infection may trigger the immune system to attack nerve roots and peripheral nerves.

Read more about causes of Guillain-Barré syndrome.

The symptoms of Guillain-Barré syndrome usually develop one to three weeks after a minor infection, such as a cold, sore throat or gastroenteritis (an infection of the stomach and bowel).

Symptoms often start in your feet and hands before spreading to your arms and then your legs. Initially, you may have:

  • pain, tingling and numbness
  • progressive muscle weakness
  • co-ordination problems and unsteadiness (you may be unable to walk unaided)

The weakness usually affects both sides of your body, and it may get worse over several days.

Read more about the symptoms of Guillain-Barré syndrome

The peripheral nervous system

The peripheral nervous system is the network of nerves that lie outside the central nervous system, including the motor nerves, which the brain uses to control the muscles.

In Guillain-Barré syndrome, the immune system (the body's natural defence against infection and illness) attacks these nerves, causing them to become inflamed and stop working.

Inflammation of the peripheral nerves causes a tingly, numbing sensation in the arms and legs. This may lead to impaired feeling and limb weakness. Sometimes, respiratory muscles are also involved.

Diagnosing Guillain-Barré syndrome

It can sometimes be difficult to distinguish the symptoms of Guillain-Barré syndrome from other brain and nervous system disorders. Therefore, two tests are usually used to confirm the diagnosis. They are:

  • nerve conduction studies and electromyography (EMG)  tests that measure nerve and muscle function
  • lumbar puncture  where a small needle is used to remove a small amount of fluid from the spinal canal for analysis

You may also have blood tests to rule out other possible causes.

Read more about how Guillain-Barré syndrome is diagnosed.

Treating Guillain-Barré syndrome

Guillain-Barré syndrome is treated in hospital in a general ward, a neurology ward or an intensive care unit (ICU), depending on the severity of the condition.

There are two main treatments:

  • intravenous immunoglobulin
  • plasma exchange (plasmapheresis)

These treatments target the antibodies (infection-fighting proteins) produced by your immune system to prevent them further damaging your peripheral nerves.

Intravenous immunoglobulin is slightly safer and easier to give than plasma exchange. However, both treatments are equally effective.

Read more about how Guillain-Barré syndrome is treated.

Recovery

Most people (about 80%) with Guillain-Barré syndrome make a full recovery. However, you may need to spend several weeks in hospital and it may take a year or more to fully recover.

Read more about recovering from Guillain-Barré syndrome.

Complications

About one or two people in every 10 will not recover completely from Guillain-Barré syndrome. Possible long-term complications include:

  • not being able to walk unaided  for example, needing a wheelchair
  • loss of sensation (sensory ataxia) that may cause a lack of co-ordination
  • loss of balance
  • muscle weakness in your arms or legs
  • problems with your sense of touch known as dysaesthesia  often felt as a burning or tingling sensation

Some people with Guillain-Barré syndrome also experience persistent fatigue (extreme tiredness).

Read more about the complications of Guillain-Barré syndrome.

Page last reviewed: 09/10/2012

Next review due: 09/10/2014

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Comments

The 9 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Kerry345 said on 17 June 2014

Hi my 2 year old boy was diagnosed with Gbs on the 19 may 2014 I notice at the weekend that he was walking funny and falling over a lot so on the Monday I taken him to the doctor but he just told me to go home and if it doesn't get better in a week bring him back.I wasn't happy with that so I went to the hospital they did X-ray but didn't find anything so they sent me to the children ward they did blood test but they didn't show anything by Tuesday he couldn't walk at all and it move into his arm so they decide to do a MRI scan and lumbar puncher the MRI scan show nothing but the lumbar puncher shown high protein in the fluid so by Thursday they started treatment Immunoglobulin he had treatment for 3 day after the third treatment they let me go home and by Sunday he started to get his strength back and started crawling and by Monday he started to walk he still having physio and has to go back to hospital every other week but he is getting there

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Janeken said on 23 April 2014

I am a 70 year old female and have had GBS twice, the first time in May 2006 and the second time in April 2010.

The first episode of GBS was when I was on holiday in Florida. It came on very quickly, I was swimming happily in the pool, went inside and couldn't get off the chair without help. My legs felt tingly but I wasn't in any pain at all, just very frustrated that I couldn't get up without help, I just had no strength at all. It was very hot and we thought it might be heat exhaustion so I sat with my feet in iced water and drank a lot of cold drinks. After about 36 hours I wasn't improving so my husband took me to a walk-in medical centre. We thought they would just give me some medication and I would get better. The young male doctor I saw was, fantastic, he explained that there was a possibility that it might be GBS so arranged for me to attend the Emergency Room of the nearest hospital as a precaution. We knew the area so my husband drove me there. I was given a bed in the observation room where they gave me a few tests, including a lumbar puncture. All the doctors and nurses were fantastic and explained everything they were doing was to eliminate everything else as GBS is difficult to diagnose.

I was then given my own room which was like a hotel room and over the next 7 days I had numerous tests, including nerve conduction test and scans of the brain. They took blood at regular intervals to do tests and my arms were very bruised. Along the way they found I had a hyperactive thyroid so I was given medication for this. They finally explained that all the tests eliminated other possibilities so they concluded I had GBS. They said that they could treat this with a transfusion of Immunoglobulin which was often very effective. So they began to give me four lots of this. Apart from making me very nauseous I can only describe it as miraculous as the strength in my legs and arms began to improve.

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Sue38 said on 18 February 2014

Hi, I was diagnosed with GBS 2 days after I got married in July 2013. Like BigBirdXX docs originally thought I had stress! I spent a total of 7 weeks in hospital and 6 months off work. I have recently returned to work, on a phased return and light duties, but I am still sore/tingly and get very tired easily.

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BigBirdxx said on 31 December 2013

I was diagnosed with GBS in May 2012. After a week of feeling tired and achey, I thought something wasn't right. I had slight pins and needles in my hands and feet and found it painful in my muscles to walk or sit down.
I went to the doctors and they thought it was stress, they told me to get counselling, no tests were done so I just carried on. I still felt bad at the weekend so went to A&E, they thought it could be a really bad migraine and sent me away will some tablets. The next week I couldn't go to work, I was getting worse. The pins and needles had spread and one side of my face had dropped like I was having a stroke. We called the doctor up who did a few tests taping my arms etc, again I was told it could be something to do with a migraine and suggested I got blood tests the following day. I was even worse by the evening so my grandad took me to A&E again. Again nothing was done and by this point I could only shuffle my legs had become so painful. So the next day I went to the doctors to get blood tests. My grandma had to dress me as I was in so much pain. After the blood tests my grandma insisted we saw a doctor, we were told they were on lunch. By this point we were so frustrated that no one was helping me, couldn't they see what I was going through. So I went back home and my grandma called an ambulance.
By this time I had been ill nearly two weeks. I spent 5 hours in A&E in Bath, where they tried to work out what was wrong with me. I had three different doctors surrounding me, asking if I had flu and saying they thought I had a nerve trapped in my brain. So finally I was put on a ward and then was given a MRI scan on my brain 6 hours later! Obviously nothing showed up.
They then moved me to the nero ward where I was greeted in the morning by a consultant and lots of other doctors and students. They tapped my bones and nothing happened. She concluded that I had GBS...

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Donna HT said on 27 August 2013

Hi,I was diagnosed with Guillain Barre a year ago,and am now fully on the road to recovery. I am a member of the GBS UK support group, and a facebook support group. I will post the links to these groups below. I am happy to answer any questions, or to offer support if anybody needs it. I found both these pages to be of huge help to me.
https://www.facebook.com/groups/7829609636/
http://www.gbs.org.uk/

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laura44 said on 10 August 2013

Hi my brother has just been diagnosed with gbs its a worring time just wonderd how long others took to start walking again

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Paul_M said on 19 May 2013

Diagnosed a few weeks back, would be interested in speaking to some one who knows a bit more about it.

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jkt488 said on 29 November 2012

Hi anyone need help with dealing with GBS give me a shout. Cared for someone with this and more than happy to help :)

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gbsjon said on 14 May 2012

where are the results?
i have gbs and i am very interested.

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