What is Guillain-Barre Syndrome?
Guillain-Barre syndrome (GBS) explained: early symptoms, when to get urgent help, causes, diagnosis, IVIG and plasma exchange treatment, recovery and outlook.
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FAQ
- Guillain-Barre Syndrome Symptoms: Early Signs and When to Get Help
- How Is Guillain-Barre Syndrome Diagnosed? Tests and What to Expect
- Guillain-Barre Syndrome in Children: Signs, Treatment and Recovery
- What Causes Guillain-Barre Syndrome? Infections, Vaccines and Other Triggers
All 10 articles
- Did Franklin D Roosevelt have Guillain-Barre Syndrome?
- Is Guillain-Barre Syndrome Contagious?
- Is Guillain-Barre Syndrome Genetic or Hereditary?
- Zika Virus and Guillain-Barre Syndrome: What Is the Link?
- Can Guillain-Barre Syndrome Come Back? Recurrence and CIDP
- Is Guillain-Barre Syndrome Permanent? Can It Be Cured?
About Guillain-Barre Syndrome
Guillain-Barre syndrome (GBS, pronounced "ghee-yan bar-ray") is a rare but serious condition in which the body's immune system mistakenly attacks part of the peripheral nervous system: the nerves that connect the brain and spinal cord to the muscles and skin. It is an autoimmune disease. It usually causes tingling and weakness that start in the feet and hands and spread, and it can lead to paralysis and breathing problems.
GBS needs urgent hospital treatment. Most people recover, many of them fully, but recovery can take months, and some people are left with long-term problems.
When to get help
Get an urgent GP appointment or call NHS 111 (or your local medical helpline) if you think you might have GBS, for example if you have tingling or weakness in your feet and hands that is spreading, especially within a few weeks of an infection.
Call 999 or go to A&E (or your local emergency number) if you have:
- difficulty breathing
- drooping on one side of the face, or trouble swallowing
- slurred speech or other trouble speaking
- weakness that means you cannot lift one or both arms
Some of these can also be signs of a stroke, so do not wait to see if they pass. If you go to A&E, do not drive yourself.
Symptoms
The first symptoms are usually:
- tingling, numbness or pins and needles, usually starting in the feet and hands
- muscle weakness and difficulty moving, usually affecting both sides of the body
- sharp, shooting nerve pain or deep aching, often in the legs or back
Weakness usually starts in the legs and spreads upwards to the arms and face. Other symptoms can include:
- problems with the face, such as drooping muscles or trouble speaking or swallowing
- eye problems, such as double vision or difficulty moving the eyes
- breathing problems, because the chest muscles become weak
- in severe cases, being unable to move the legs, arms or face (paralysis)
GBS can also affect the automatic nerves that control the heart, blood pressure, digestion and bladder, which can cause an irregular heartbeat or unstable blood pressure. These problems occur in about two in every three cases, with varying severity.
Symptoms usually get worse over the first 2 to 4 weeks. Most people are at their weakest within two weeks of the first symptoms, and about 90% are at their weakest by the third week. Read more about GBS symptoms and early signs.
Children can get GBS too, although it is less common than in adults. See Guillain-Barre syndrome in children.
What causes GBS?
The exact cause is not known. GBS often starts days or weeks after a respiratory infection or a stomach bug, as if the immune system's response to the infection turns on the nerves. About 70% of people have had an infection beforehand, with symptoms typically starting about 10 days later.
Triggers linked to GBS include:
- Campylobacter jejuni, a common cause of food poisoning and the most common infection seen before GBS
- flu and other respiratory infections
- cytomegalovirus, Epstein-Barr virus, Zika virus and COVID-19, which some countries have reported more cases after
- surgery, occasionally
- very rarely, certain vaccinations
In some types of GBS the mechanism is well established: parts of the germ look similar to parts of the nerves ("molecular mimicry"), so antibodies made against the infection also attack the nerves. Read more about what causes GBS, the flu shot and GBS and Zika virus and GBS.
Is GBS contagious or hereditary?
No. You cannot catch GBS from someone else, although you can catch the infections that sometimes trigger it. GBS is not inherited. See is GBS contagious? and is GBS genetic or hereditary?
How common is GBS?
GBS is rare. Around 1 to 2 people in every 100,000 develop it each year worldwide. It is less common in children. Anyone can get it at any age, but it is more common in adults, especially over 50, and men are affected about one and a half times as often as women.
Types of GBS
GBS is a group of related conditions rather than a single disease. The main types are:
- Acute inflammatory demyelinating polyradiculoneuropathy (AIDP): the most common type. The immune system damages the myelin sheath, the protective coating around the nerves, which slows nerve signals.
- Acute motor axonal neuropathy (AMAN): the immune system damages the nerve fibres (axons) themselves.
- Miller Fisher syndrome: mainly affects the nerves of the head, causing weakness of the eye muscles, poor balance and coordination, and lost reflexes.
How is GBS diagnosed?
There is no single test. A GP will check reflexes, numbness and muscle strength and refer anyone with suspected GBS to a neurologist, usually in hospital. Tests can include:
- a lumbar puncture, to test the fluid around the spinal cord: in GBS it often has raised protein but few immune cells
- nerve conduction studies, an electrical test that shows whether nerve signals are slowed
- breathing tests (spirometry), to check the breathing muscles
- blood tests and sometimes an MRI scan, to rule out other causes
Read more about how GBS is diagnosed.
Treatment
People with GBS are admitted to hospital straight away. The stay usually lasts several weeks, and some people need several months.
There is no cure, but two treatments stop the immune system attacking the nerves and can shorten recovery:
- Intravenous immunoglobulin (IVIG), given into a vein
- Plasma exchange
Both are equally effective when started within two weeks of the first symptoms. Steroids have been tried, but trials show they do not help.
Supportive care is just as important. It can include:
- a ventilator in intensive care if the breathing muscles become too weak
- medicines and compression stockings to prevent blood clots while the person cannot walk
- pain relief for nerve pain
- monitoring of heart rate and blood pressure
Read more about treatment for GBS.
Recovery
Most people start to recover two to three weeks after symptoms begin, once the illness stops getting worse. Recovery can take a few weeks to a few years:
- most people can walk again within 6 months and recover within a year
- after treatment, about 77% of people can walk on their own at 6 months and 81% at 12 months
- more than half of people recover fully within a year, and some keep improving after that
Physiotherapy helps with stiffness, strength and movement, and occupational therapy helps with everyday tasks and returning to work.
Some people are left with long-term problems, such as tingling in the hands and feet, nerve pain, fatigue, muscle weakness, needing help to walk, and anxiety or depression. Cleveland Clinic says about 30% of adults, and more children, still have some muscle weakness three years after diagnosis.
Can you die from GBS?
GBS can be life-threatening while the illness is active, mainly because it can weaken the breathing muscles and affect the heart and blood pressure. Up to 30% of people develop breathing failure. With modern intensive care, most people survive, even those who need a ventilator.
Published death rates vary: one review gives 3% to 7% overall and about 20% for people who need a ventilator, while Cleveland Clinic says fewer than 2% die in the acute phase. The risk is higher in older people and those with severe symptoms. Read more about GBS life expectancy and survival.
Can GBS come back?
Recurrence is uncommon, affecting fewer than 5% of people. Because relapse can happen, people are usually checked every few months after recovery and then once a year. Contact a specialist straight away if symptoms return or long-term symptoms get worse. See can GBS come back?
Living with GBS
Being suddenly paralysed and in hospital for weeks can be frightening, and anxiety and depression can follow. Talking therapies can help, and the UK charity Inflammatory Neuropathies UK supports people with GBS and their families.
You can also read about whether Franklin D. Roosevelt had Guillain-Barre syndrome.