Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms.
These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment.
The exact cause of Guillain-Barre syndrome is unknown. But two-thirds of patients report symptoms of an infection in the six weeks preceding. These include respiratory or a gastrointestinal infection or Zika virus.
There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Although most people recover from Guillain-Barre syndrome, the mortality rate is 4% to 7%. Between 60-80% of people are able to walk at six months. Patients may experience lingering effects from it, such as weakness, numbness or fatigue.
Guillain-Barre syndrome often begins with tingling and weakness starting in your feet and legs and spreading to your upper body and arms. In about 10% of people with the disorder, symptoms begin in the arms or face. As Guillain-Barre syndrome progresses, muscle weakness can evolve into paralysis.
Signs and symptoms of Guillain-Barre syndrome may include:
- Prickling, pins and needles sensations in your fingers, toes, ankles or wrists
- Weakness in your legs that spreads to your upper body
- Unsteady walking or inability to walk or climb stairs
- Difficulty with facial movements, including speaking, chewing or swallowing
- Double vision or inability to move eyes
- Severe pain that may feel achy, shooting or cramplike and may be worse at night
- Difficulty with bladder control or bowel function
- Rapid heart rate
- Low or high blood pressure
- Difficulty breathing
People with Guillain-Barre syndrome usually experience their most significant weakness within two weeks after symptoms begin.
Once thought to be a single disorder, Guillain-Barre syndrome is now known to occur in several forms. The main types are:
- Acute inflammatory demyelinating polyradiculoneuropathy (AIDP), the most common form in North America and Europe. The most common sign of AIDP is muscle weakness that starts in the lower part of your body and spreads upward.
- Miller Fisher syndrome (MFS), in which paralysis starts in the eyes. MFS is also associated with unsteady gait. MFS is less common in the U.S. but more common in Asia.
- Acute motor axonal neuropathy (AMAN) and acute motor-sensory axonal neuropathy (AMSAN) are less common in the U.S. But AMAN and AMSAN are more frequent in China, Japan and Mexico.
When to see a doctor
Call your doctor if you have mild tingling in your toes or fingers that doesn't seem to be spreading or getting worse. Seek emergency medical help if you have any of these severe signs or symptoms:
- Tingling that started in your feet or toes and is now moving up your body
- Tingling or weakness that's spreading rapidly
- Difficulty catching your breath or shortness of breath when lying flat
- Choking on saliva
Guillain-Barre syndrome is a serious condition that requires immediate hospitalization because it can worsen rapidly. The sooner appropriate treatment is started, the better the chance of a good outcome.
The exact cause of Guillain-Barre syndrome isn't known. The disorder usually appears days or weeks after a respiratory or digestive tract infection. Rarely, recent surgery or vaccination can trigger Guillain-Barre syndrome. Recently, there have been cases reported following infection with the Zika virus. Guillain-Barre syndrome may occur after infection with the COVID-19 virus. It's also a rare reaction in those who receive the Johnson & Johnson COVID-19 vaccine.
In Guillain-Barre syndrome, your immune system — which usually attacks only invading organisms — begins attacking the nerves. In AIDP, the most common form of Guillain-Barre syndrome in the U.S., the nerves' protective covering (myelin sheath) is damaged. The damage prevents nerves from transmitting signals to your brain, causing weakness, numbness or paralysis.
Guillain-Barre syndrome can affect all age groups. But your risk increases as you age. It's also more common in males than females.
Guillain-Barre syndrome may be triggered by:
- Most commonly, infection with campylobacter, a type of bacteria often found in undercooked poultry
- Influenza virus
- Epstein-Barr virus
- Zika virus
- Hepatitis A, B, C and E
- HIV, the virus that causes AIDS
- Mycoplasma pneumonia
- Hodgkin's lymphoma
- Rarely, influenza vaccinations or childhood vaccinations
- COVID-19 virus
- COVID-19 Johnson & Johnson vaccine
Guillain-Barre syndrome affects your nerves. Because nerves control your movements and body functions, people with Guillain-Barre may experience:
- Breathing difficulties. The weakness or paralysis can spread to the muscles that control your breathing, a potentially fatal complication. Up to 22% of people with Guillain-Barre syndrome need temporary help from a machine to breathe within the first week when they're hospitalized for treatment.
- Residual numbness or other sensations. Most people with Guillain-Barre syndrome recover completely or have only minor, residual weakness, numbness or tingling.
- Heart and blood pressure problems. Blood pressure fluctuations and irregular heart rhythms (cardiac arrhythmias) are common side effects of Guillain-Barre syndrome.
- Pain. One-third of people with Guillain-Barre syndrome experience severe nerve pain, which may be eased with medication.
- Bowel and bladder function problems. Sluggish bowel function and urine retention may result from Guillain-Barre syndrome.
- Blood clots. People who are immobile due to Guillain-Barre syndrome are at risk of developing blood clots. Until you're able to walk independently, taking blood thinners and wearing support stockings may be recommended.
- Pressure sores. Being immobile also puts you at risk of developing bedsores (pressure sores). Frequent repositioning may help avoid this problem.
- Relapse. From 2% to 5% of people with Guillain-Barre syndrome experience a relapse.
Severe, early symptoms of Guillain-Barre syndrome significantly increase the risk of serious long-term complications. Rarely, death may occur from complications such as respiratory distress syndrome and heart attacks.