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Guillain-Barr Content Supplied by NHS Choices
Introduction

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's 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 two to four 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 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.

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="_blank"=""=""=""=""=""=""=""=""=""=""=""="" 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 with Guillain-Barré syndrome make a full recovery.

However, you may need to spend several weeks or months in hospital and it may take a year or more to fully recover.

Therapies such as counselling, physiotherapy, occupational therapy and speech and language therapy are available to help you recover.

Read more about recovering from Guillain-Barré syndrome.

Complications

Some people won't recover completely from Guillain-Barré syndrome and up to 20% of people still experience some muscle weakness after three years.

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 (dysaesthesia) - often felt as a burning or tingling sensation

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

In rare cases, complications can be life-threatening, particularly in the 'acute' phase when a person is most unwell.

Read more about the complications of Guillain-Barré syndrome.

Who is affected

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

It affects slightly more men than women and can occur at any age. However, it's most common in adults between the ages of 30-50 years.

Information about you

If you have Guillain-Barré syndrome, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

Find out more about the register.


Symptoms of Guillain-Barré syndrome

Symptoms of Guillain-Barré syndrome can develop quickly over a few hours. The muscle weakness often gets progressively worse within a few days or weeks.

The first symptoms usually develop two to four weeks after a minor infection, such as a cold, sore throat or gastroenteritis (an infection of the stomach and large intestine).

Symptoms often start in your feet and hands before spreading to your arms and 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 may get worse over a period of several days.

In mild cases of Guillain-Barré syndrome, your muscles may only be slightly weakened. However, in more severe cases, the muscle weakness can progress to:

  • temporary paralysis of the legs, arms and face
  • temporary paralysis of the respiratory muscles
  • blurred or double vision
  • difficulty speaking 
  • difficulty chewing or swallowing (dysphagia), resulting in the need to be fed through a tube
  • difficulty with digestion or bladder control
  • fluctuations in heart rate or blood pressure

Some people with Guillain-Barré syndrome don't experience any pain, while others have severe pain in their spine, arms and legs.

When to seek immediate medical assistance

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

However, seek immediate medical assistance if you experience:

  • difficulty breathing
  • difficulty swallowing
  • fainting (loss of consciousness)
  • temporary paralysis of the limbs or face

Causes of Guillain-Barré syndrome

Guillain-Barré syndrome is an autoimmune condition (where the immune system attacks healthy cells and tissue). It's not known what causes the immune system to do this.

Most people develop Guillain-Barré syndrome after having another illness. This is usually a viral infection, such as the common coldinfluenza, a throat infection, or sometimes a bacterial infection (see below).

It's thought the infection may trigger the immune system to attack nerve roots and peripheral nerves. The peripheral nervous system controls the body's senses and movements.

It's not possible for Guillain-Barré syndrome to be transmitted from one person to another and it's not inherited.

Immune response 

The immune system uses white blood cells to produce antibodies. Antibodies are infection-fighting proteins that attack the bacteria or virus causing the infection. However, in Guillain-Barré syndrome the antibodies react to the cells of the protective covering (myelin sheath) of the peripheral nerves.

This damages the nerves and slows down the nerve signals sent to your muscles. This causes the symptoms of Guillain-Barré syndrome, such as tingling, numbness, weakness and, in some cases, temporary muscle paralysis.

Possible triggers

Although the exact cause is unknown, most cases of Guillain-Barré syndrome occur after:

  • a virus - such as the cytomegalovirus (a member of the herpes group), the Epstein-Barr virus or HIV
  • a bacterial infection - such as infection from Campylobacter bacteria, a common cause of food poisoning

Vaccination

In the past, vaccinations (particularly the swine flu vaccination used during 1976-77) were thought to be a possible cause of Guillain-Barré syndrome. However, subsequent studies have shown there's virtually no risk of developing Guillain-Barré syndrome after being vaccinated.

During the 2009-10 swine flu pandemic, about 6 million doses of the vaccine Pandemrix were given in the UK. The Medicines and Healthcare products Regulatory Agency (MHRA), which monitors the safety of vaccines, received 15 suspected reports of Guillain-Barré syndrome during the pandemic. However, the diagnosis was not confirmed in any of these cases.


Diagnosing Guillain-Barré syndrome

Your GP may be able to diagnose Guillain-Barré syndrome from your symptoms and by carrying out an examination.

If you've been ill recently and have progressive muscle weakness or paralysis, you may have the condition.

Guillain-Barré syndrome can sometimes be difficult to diagnose as symptoms vary from person to person and can be similar to other brain and nervous system disorders.

In hospital, two specialist tests are usually done to rule out other conditions and confirm a problem in the nerves. These are:

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

Electromyography (EMG)

Electromyography (EMG) measures the health of your muscles and the nerves that control them.

To test the muscles, a needle electrode is inserted into the muscle to give an electrical recording of your muscle activity. This helps determine whether your muscles respond when certain nerves are stimulated. In Guillain-Barré syndrome, the muscles may not respond due to nerve damage.

To test the nerves, a surface electrode (a small, metal disc) is stuck to your skin to stimulate the nerves with a small electric shock. The response from your nerves (how quickly your nerves conduct electric signals) is measured. If you have Guillain-Barré syndrome, your nerve responses may be slower than normal, although the changes may be minor in the early stages.

Lumbar puncture

A lumbar puncture is a procedure carried out under local anaesthetic that involves inserting a needle into the lumbar spinal canal. This is the space in the lower spine (below the end of the spinal cord).

It's used to measure the protein levels (a measure of inflammation) and cell count in the cerebrospinal fluid, and to exclude other causes of nerve inflammation.

Read more about lumbar puncture.


Treating Guillain-Barré syndrome

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

You'll be treated in hospital, where your condition and breathing will be closely monitored. Depending on how severe your condition is, you may be admitted to:

  • a general ward
  • a neurology ward - a ward that specialises in treating neurological conditions
  • an intensive care unit (ICU) - a special ward providing intensive care for people who are critically ill or in an unstable condition
  • a high-dependency unit (HDU) - one step down from an ICU, more intense treatment is given here than in a general ward

If you're having difficulty breathing, you may be put on a ventilator (a machine that assists with breathing). Around a quarter of people with Guillain-Barré syndrome need to use a ventilator.

Two main treatments are used in cases of Guillain-Barré syndrome:

  • intravenous immunoglobulin
  • plasma exchange (plasmapheresis)

These treatments target=""=""="" the antibodies (infection-fighting proteins) in your blood that are reacting to your peripheral nerves and damaging them.

Intravenous immunoglobulin is slightly safer and easier to give than plasma exchange. However, both treatments are equally effective. They both need to be given during the first few weeks of your symptoms.

Intravenous immunoglobulin (IVIg)

Immunoglobulin is another name for antibodies. Antibodies are proteins produced by the immune system to destroy harmful bacteria and viruses. The immune system is the body's natural defence against illness and infection.

During IVIg, healthy immunoglobulin is taken from blood donors and given to you intravenously (directly into a vein). The healthy antibodies block and destroy the harmful antibodies attacking your nerves. You will usually receive a dose of IVIg every day for around five days.

Plasma exchange (plasmapheresis)

Plasma is the fluid found in blood that transports blood cells and platelets around the body. It contains a number of substances, including proteins.

During plasma exchange, you'll be connected to a machine that removes some of your blood. The plasma is separated from the blood cells and removed. The blood cells are returned to your body without the harmful plasma cells that attack the nerves. Your blood cells will produce healthy plasma to replace the harmful plasma that was removed.

Depending on the severity of your condition, you may need several sessions of plasma exchange.

Read more about plasma exchange.

Monitoring your condition

While being treated for Guillain-Barré syndrome, you may need to spend several weeks or months in hospital. This is so you can be closely monitored and your breathing, heart rate and blood pressure can be regularly checked.

You may be given painkillers if you're in pain. If you develop a problem with your heart rate or blood pressure you may need further medication.

Once you start to recover, you may be moved to a general hospital ward or a rehabilitation ward before being discharged. You should continue receiving treatment to help your recovery.

Read more about recovering from Guillain-Barré syndrome.

Corticosteroids

Corticosteroids aren't recommended for the treatment of Guillain-Barré syndrome.

Although corticosteroids are often used to reduce inflammation, there's no evidence to suggest they offer a significant benefit in treating this condition.

Support group

To speak to someone about Guillain-Barré syndrome, you can contact the GAIN charity. Their free helpline number is 0800 374 803.


Recovering from Guillain-Barré syndrome

Most people with Guillain-Barré syndrome make a full recovery within a year.

Some people only take a few weeks to recover. Others experience delayed recovery and may need to spend up to a few months in hospital or a neurological rehabilitation unit.

You may not be able to walk unaided, have numbness or weakness in your arms or legs, and you may have persistent fatigue (extreme tiredness).

Read more about the complications of Guillain-Barré syndrome.

The following therapies may be used to help your recovery.

Counselling

Counselling is a talking therapy you may find useful if you have Guillain-Barré syndrome, or while you are recovering from it. During counselling you'll be able to:

  • discuss your problems honestly and openly
  • address any issues that are preventing you from achieving your goals and objectives
  • achieve a more positive outlook on life

Guillain-Barré & Associated Inflammatory Neuropathies (GAIN) is a UK-based charity offering advice and support to those affected by the syndrome.

Physiotherapy

Physiotherapy can help restore movement and function to a person's full potential.

A range of techniques are used to help relieve any pain, discomfort and muscle stiffness. These include:

  • movement and exercise - taking into account a person's current level of health and specific requirements
  • manual therapy - where the physiotherapist uses their hands to relieve pain and stiffness
  • aquatic therapy - a form of physiotherapy carried out in water
  • other techniques - such as heat, cold and acupuncture to ease pain

Occupational therapy

An occupational therapist will be able to identify any problems that Guillain-Barré syndrome causes in your everyday life, and help you work out practical solutions.

This may involve:

  • practising the activity in manageable stages
  • learning a different way to complete the activity
  • trying devices that make activities easier

For example, if you find it difficult to get in and out of the bath, grab rails could be fitted in the bathroom to make this easier.

Read more about occupational therapy.

Speech and language therapy

A speech and language therapist will be able to help people who experience:

  • difficulty speaking (dysarthria)
  • difficulty swallowing (dysphagia)
  • weakness of any associated muscles

This may involve a tailored programme of exercises to improve speech or swallowing. If necessary, communication aids may be recommended.


Complications of Guillain-Barré syndrome

Some people won't recover completely from Guillain-Barré syndrome and experience long-term complications.

Possible 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, which may be felt as a burning or tingling sensation

It's estimated around 20% of people with Guillain-Barré syndrome still experience some muscle weakness after three years.

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

A small number of people may experience a relapse of symptoms such as muscle weakness and tingling years later.

Life-threatening complications

There's a small chance (about one in 20) of dying from Guillain-Barré syndrome. This is usually the result of complications developing during the first few weeks of the condition. For example:

  • respiratory failure - where your lungs are unable to provide enough oxygen for the rest of your body
  • infections - particularly respiratory infections in people who are on a ventilator (a machine that assists with breathing)
  • heart rhythm disorders - including cardiac arrest
  • bowel obstruction

The risk is increased in elderly people and people with certain underlying conditions, such as chronic obstructive pulmonary disease (COPD).


 
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