Guillain-Barré syndrome: what it is, symptoms, causes, treatment and recovery

The NHS describes GBS as a rare condition that affects the nerves, and says it is serious and needs urgent treatment in hospital. It affects your senses, your movement and things such as breathing and your heartbeat.

The NHS explains that when you get an infection, the immune system normally attacks and kills the bacteria or virus. In GBS the immune system starts to attack your nerves.

Patient.info's professional reference describes it as an acute inflammatory polyneuropathy, with weakness, abnormal sensation and reduced reflexes. It says about 95% of cases are the form called AIDP, and that Miller Fisher syndrome is a closely related variant mainly affecting the eye muscles.

Patient.info gives the crude incidence of typical GBS in North America and Europe as 0.8 to 1.9 per 100,000 person-years. The NHS says it can affect anyone but is more common in adults and males.

The NHS says it usually affects your arms and legs first before you get symptoms in other parts of the body. Symptoms usually get worse over the first 2 to 4 weeks. You might feel tingling, numbness or pins and needles in your feet and hands first, usually followed by muscle weakness and difficulty moving your joints.

Other symptoms can include:

• Sharp, shooting pain (nerve pain), often in the legs or back.

• Problems breathing.

• Problems with the face, such as drooping face muscles or trouble swallowing or speaking.

• Problems with the eyes, such as double vision.

• In some people symptoms become so severe that they cannot move their legs, arms and face (paralysis).

The NHS says to ask for an urgent GP appointment or get help from NHS 111 if you think you have Guillain-Barré syndrome. It stresses that some of the symptoms are common and may be caused by another condition, but it is important to get medical help so your symptoms can be checked.

It says to call 999 or go to A&E if you have problems with your face muscles such as one side of your face drooping, or trouble swallowing, if you cannot lift one or both arms, or if you have trouble speaking such as slurring your words, because these could be signs of a stroke. Do not drive yourself to A&E.

If you have already recovered and your symptoms come back, or you have long-term symptoms that are getting worse, the NHS says to contact your specialist straight away.

The NHS says it is not known what causes GBS, but it is thought to be caused by problems with the immune system. It usually starts within a few weeks of an infection such as flu or a stomach bug. There have also been very rare cases in older adults who have had the RSV vaccine.

Patient.info says about 75% of patients have a history of a preceding viral or bacterial infection, usually of the respiratory or gastrointestinal tract. It lists Campylobacter jejuni, Epstein-Barr virus, hepatitis E virus, influenza, cytomegalovirus, mycoplasma, HIV and Zika virus among infections linked to GBS.

It says antibodies to the infecting organism may also attack nerve tissue, through molecular mimicry. It says that although case reports of GBS following COVID-19 vaccination exist, a causal link has not been established.

The sources describe an immune reaction that follows an infection. They do not describe GBS itself as passing from one person to another.

The NHS says your GP will check your reflexes and check for numbness or weakness in your muscles. If GBS is suspected, they will refer you to a neurologist for tests and treatment.

Tests may include an electrical test of the nerves and muscles, a breathing test (spirometry), blood tests and a lumbar puncture, where a sample of fluid is taken from the spine.

Patient.info says most patients have raised cerebrospinal fluid protein with no rise in cell counts, though the rise may not be seen until 1 to 2 weeks after the onset of weakness.

The NHS says that if you are diagnosed, you will be treated in hospital straight away. You will usually be in hospital for several weeks, and some people for several months.

Your main treatment will be immunotherapy to stop your immune system attacking your nerves: either intravenous immunoglobulin (IVIG) or plasma exchange.

Patient.info says a Cochrane review found that, in severe disease, IVIG started within two weeks of onset hastens recovery as much as plasma exchange, and that corticosteroids given alone do not significantly hasten recovery.

The NHS says most people will be able to walk within 6 months and will recover within a year. Some people continue to have longer-term problems:

• Tingling in the hands and feet.

• Sharp, shooting pain (nerve pain).

• Feeling exhausted (fatigue).

• Muscle pain and muscle weakness.

• Being unable to walk without help.

• Anxiety and depression.

The NHS says GBS can be life-threatening and cannot always be cured. The chance of dying is higher in older people or people who have had severe symptoms. Patient.info says the outcome for most patients, even those who needed mechanical ventilation at the peak, is generally good, and that poor prognosis is linked to rapid progression, advanced age and prolonged ventilation.

The NHS says your doctor will check you every few months after you recover, then once a year, because some people can become unwell again and need more treatment.

Having GBS can affect your mental health. The NHS says NHS talking therapies are free, and points to charities such as Inflammatory Neuropathies UK.

GBS is treated as an emergency, in NHS hospitals, often with neurology and intensive care involvement. Because treatment cannot wait, the pathway starts with urgent assessment rather than a planned referral.

Private neurology opinions and rehabilitation may be used during recovery. Keep your NHS neurologist informed so that follow-up checks and results stay together.