Guillain Barre Syndrome

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Introduction

Guillain-Barré Syndrome

Guillain-Barré (pronounced ghee-yan bar-ray) syndrome is a very rare and serious condition that affects the nerves.

It mainly affects the feet, hands and limbs, causing problems such as numbness, weakness and pain.

It can be treated and most people will eventually make a full recovery, although it can occasionally be life-threatening and some people are left with long-term problems.

Guillain-Barré syndrome affects people of all ages, but your chances of getting it increase as you get older.

This page covers:

Symptoms

When to get medical help

Causes

Treatments

Recovery and complications

Symptoms of Guillain-Barré syndrome

Symptoms often start in your feet and hands before spreading to your arms and legs.

At first you may have:

  • numbness
  • pins and needles
  • muscle weakness
  • pain
  • problems with balance and co-ordination

These symptoms may continue to get worse over the next few days or weeks before they start to slowly improve. In severe cases, you may have difficulty moving, walking, breathing and/or swallowing.

Read more about the symptoms of Guillain-Barré syndrome

When to get medical help

See your GP if you notice any of the early symptoms of Guillain-Barré syndrome, such as numbness or weakness.

Call 999 for an ambulance or go to your nearest accident and emergency (A&E) department immediately if someone:

  • has difficulty breathing, swallowing or speaking
  • can't move their limbs or face
  • faints and doesn't regain consciousness within two minutes

This is a medical emergency and the person needs to be seen in hospital as soon as possible.

Read more about how Guillain-Barré syndrome is diagnosed.

Causes of Guillain-Barré syndrome

Guillain-Barré syndrome is thought to be caused by a problem with the immune system, the body's natural defence against illness and infection.

Normally the immune system attacks any germs that get into the body. But in people with Guillain-Barré syndrome, something goes wrong and it mistakenly attacks and damages the nerves.

It's not clear exactly why this happens, but it can be triggered by:

  • an infection, such as food poisoningflu or cytomegalovirus
  • a vaccination, such as the flu vaccine (but this is extremely rare and the benefits of vaccination outweigh any risk)
  • surgery, a medical procedure or an injury

Read more about causes of Guillain-Barré syndrome.

Treatments for Guillain-Barré syndrome

Most people with Guillain-Barré syndrome are treated in hospital.

The main treatments are:

  • intravenous immunoglobulin (IVIG) - a treatment made from donated blood that helps bring your immune system under control
  • plasma exchange (plasmapheresis) - an alternative to IVIG where a machine is used to filter your blood to remove the harmful substances that are attacking your nerves
  • treatments to reduce symptoms and support body functions, such as painkillers, a machine to help with breathing and/or a feeding tube

Most people need to stay in hospital for a few weeks to a few months.

Read more about how Guillain-Barré syndrome is treated.

Recovering from Guillain-Barré syndrome

Most people with Guillain-Barré syndrome make a full recovery, but this can take months or even years.

Some people won't make a full recovery and are left with long-term problems such as:

  • being unable to walk without assistance
  • weakness in your arms, legs or face
  • numbness, pain or a tingling or burning sensation
  • balance and co-ordination problems
  • extreme tiredness

Therapies such as physiotherapyoccupational therapy and speech and language therapy can help you recover and cope with any lasting difficulties.

Very occasionally, Guillain-Barré syndrome can cause life-threatening problems such as severe breathing difficulties or blood clots. Overall, around 1 in 20 cases is fatal.

Read more about recovering from Guillain-Barré syndrome.

Symptoms

Symptoms

Guillain-Barré syndrome usually affects the feet or hands first, before spreading to other parts of the body.

It often starts a few days or weeks after an infection, such as a stomach bug or flu.

Early symptoms

Symptoms of Guillain-Barré syndrome usually develop over hours or days and tend to start in your feet and hands before spreading to your arms and legs.

At first you may have:

  • numbness
  • pins and needles
  • muscle weakness
  • pain
  • problems with balance and co-ordination

These symptoms usually affect both sides of the body at the same time.

Later symptoms

The symptoms may continue to get worse over the next few days or weeks.

Some people are only mildly affected, but others may have:

  • difficulty walking without assistance
  • an inability to move the legs, arms and/or face (paralysis)
  • difficulty breathing
  • blurred or double vision
  • difficulty speaking 
  • problems swallowing or chewing
  • difficulty peeing, and constipation
  • persistent and/or severe pain

Guillain-Barré syndrome usually reaches its most severe point within four weeks. It may then remain stable for a few weeks or months before gradually improving.

Get medical help

See your GP if you notice any of the early symptoms of Guillain-Barré syndrome, such as numbness or weakness.

Call 999 for an ambulance or go to your nearest accident and emergency (A&E) department immediately if someone:

  • has difficulty breathing, swallowing or speaking
  • can't move their limbs or face
  • faints and doesn't regain consciousness within two minutes

This is a medical emergency and the person needs to be seen in hospital as soon as possible.

Read more about how Guillain-Barré syndrome is diagnosed and how Guillain-Barré syndrome is treated.

Causes

Causes

Guillain-Barré syndrome is thought to be caused by a problem with the immune system, the body's natural defence against illness and infection.

Normally the immune system attacks any germs that get into the body. But in people with Guillain-Barré syndrome, something goes wrong and it mistakenly attacks the nerves.

This damages the nerves and stops signals from the brain travelling along them properly, which can cause problems such as numbness, weakness and pain in the limbs.

It's not clear exactly why this happens. The condition isn't passed from person to person and isn't inherited.

Possible triggers

Sometimes Guillain-Barré syndrome appears to have a particular trigger. Some of the main triggers associated with it are outlined below.

Infections

In about two in every three cases, Guillain-Barré syndrome occurs a few days or weeks after an infection.

Infections that have been known to trigger the condition include:

Vaccinations

In the past, vaccinations (particularly the flu vaccine used in the US during a swine flu outbreak in 1976) were linked to an increased risk of Guillain-Barré syndrome.

But research has since found the chances of developing the condition after having a vaccination are extremely small.

For example, a study into the vaccine used during the 2009 swine flu outbreak found that for every million people who had the vaccination, there were less than two extra cases of Guillain-Barré syndrome.

The benefits of vaccination are likely to outweigh any potential risk, as infections such as flu are more common triggers of the condition.

Other triggers

Other possible triggers for Guillain-Barré syndrome include:

Diagnosis

Diagnosis

Guillain-Barré syndrome can be difficult to diagnose because several other conditions can cause similar symptoms.

Your GP will refer you to a hospital specialist if they think you might have it or they aren't sure what's causing your symptoms.

Some of the main checks and tests you may need are outlined below.

Examination

Your GP or specialist may:

  • ask about your symptoms, such as how long they've lasted and whether they're getting worse - muscle weakness that's getting worse over time is a common sign of Guillain-Barré syndrome
  • examine your hands, feet or limbs to check for symptoms such as numbness
  • ask if you've recently been ill - Guillain-Barré syndrome often follows an infection such as food poisoning or flu
  • check your reflexes, such as whether your leg twitches when your knee is tapped in a particular place - people with Guillain-Barré syndrome usually have no or reduced reflexes

Nerve tests

In hospital, two tests may be carried out to see how well your nerves are working.

These are:

  • electromyography (EMG) - tiny needles are inserted into your muscles and electrical recordings are taken to see how they react when nearby nerves are activated
  • nerve conduction studies - small discs (electrodes) are stuck on your skin and minor electric shocks are used to activate the nerves and measure how quickly these signals travel along them

In people with Guillain-Barré syndrome, these tests will usually show that signals aren't travelling along the nerves properly.

Lumbar puncture

A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine) using a needle inserted into the lower part of the spine.

The sample of fluid will be checked for signs of problems that can cause similar symptoms to Guillain-Barré syndrome, such as an infection.

Read more about what happens during a lumbar puncture.

Treatment

Treatment

Treatment for Guillain-Barré syndrome can help reduce the symptoms and speed up recovery.

Most people are treated in hospital and usually need to stay in hospital for a few weeks to a few months.

The main treatments are outlined below.

Intravenous immunoglobulin (IVIG)

The most commonly used treatment for Guillain-Barré syndrome is intravenous immunoglobulin (IVIG).

When you have Guillain-Barré syndrome, the immune system (the body's natural defences) produces harmful antibodies that attack the nerves.

IVIG is a treatment made from donated blood that contains healthy antibodies. These are given to help stop the harmful antibodies damaging your nerves.

IVIG is given directly into a vein. Most people need treatment once a day for around five days.

Plasma exchange (plasmapheresis)

A plasma exchange, also called plasmapheresis, is sometimes used instead of IVIG.

This involves being attached to a machine that removes blood from a vein and filters out the harmful antibodies that are attacking your nerves before returning the blood to your body.

Most people need treatment every other day for a week or two.

Read more about the plasma exchange procedure.

Other treatments

While in hospital, you'll be closely monitored to check for any problems with your lungs, heart or other body functions.

You'll also be given treatment to relieve your symptoms and reduce the risk of further problems. This may include:

  • a breathing machine (ventilator) if you're having difficulty breathing
  • a feeding tube if you have swallowing problems
  • painkillers if you're in pain
  • being gently moved around on a regular basis to avoid bed sores and keep your joints healthy
  • a thin tube called a catheter in your urethra (the tube that carries urine out of the body) if you have difficulty peeing
  • laxatives if you have constipation
  • medication and/or special leg stockings to prevent blood clots

Once you start to improve, you may also need extra support to aid your recovery. Read more about recovering from Guillain-Barré syndrome.

Recovery

Recovery

Most people eventually make a full recovery from Guillain-Barré syndrome, but this can take a long time and some people have long-term problems.

The time it takes to recover can vary from a few weeks to a few months, or sometimes several years.

The vast majority of people recover within a year.

A few people may have symptoms again years later but this is rare.

Possible long-term problems

These can include:

  • being unable to walk without assistance - some people need to use a wheelchair
  • weakness in your arms, legs or face
  • numbness, pain or a tingling or burning sensation
  • balance and co-ordination problems
  • extreme tiredness

Support and rehabilitation

Specialised services are available to help you recover and adapt to any long-term problems.

This may involve support from:

  • physiotherapist - who can help with movement problems
  • an occupational therapist - who can identify problem areas in the person's everyday life and work out practical solutions
  • a speech and language therapist - who can help with communication and swallowing problems
  • counsellor - who you can discuss your problems with and who can help you find ways to cope emotionally

Your health and care needs will be assessed and an individual care plan drawn up to meet those needs. This should involve a discussion with you and anyone likely to be involved in your care.

See the care and support section for information and advice about caring for someone, including sections that may be useful if you're new to caring.

Support groups

If you have Guillain-Barré syndrome, or you're caring for someone who has, you may find it useful to get in touch with a support group.

The main UK-based support group is GAIN (Guillain-Barré & Associated Inflammatory Neuropathies). You can visit their website for information or contact their helpline on 0800 374803.

You can also ask the healthcare professionals caring for you about support groups in your area.