Guillain-Barre syndrome

Guillain-Barre (gee-YAH-buh-RAY) syndrome is a condition in which the body's immune system attacks the nerves. It can cause weakness, numbness or paralysis.

Weakness and tingling in the hands and feet are usually the first symptoms. These sensations can quickly spread and may lead to paralysis. In its most serious form, Guillain-Barre syndrome is a medical emergency. Most people with the condition need treatment in a hospital.

Guillain-Barre syndrome is rare, and the exact cause is not known. But two-thirds of people have symptoms of an infection in the six weeks before Guillain-Barre symptoms begin. Infections can include a respiratory or a gastrointestinal infection, including COVID-19. Guillain-Barre also can be caused by the Zika virus.

There's no known cure for Guillain-Barre syndrome. Several treatment options can ease symptoms and help speed recovery. Most people recover completely from Guillain-Barre syndrome, but some serious illnesses can be fatal. While recovery may take up to several years, most people are able to walk again six months after symptoms first began. Some people may have lasting effects, such as weakness, numbness or fatigue.

Guillain-Barre syndrome often begins with tingling and weakness starting in the feet and legs and spreading to the upper body and arms. Some people notice the first symptoms in the arms or face. As Guillain-Barre syndrome progresses, muscle weakness can turn into paralysis.

Symptoms of Guillain-Barre syndrome may include:

• A pins and needles feeling in the fingers, toes, ankles or wrists.
• Weakness in the legs that spreads to the upper body.
• Unsteady walk or not being able to walk or climb stairs.
• Trouble with facial movements, including speaking, chewing or swallowing.
• Double vision or inability to move the eyes.
• Severe pain that may feel achy, shooting or cramplike and may be worse at night.
• Trouble with bladder control or bowel function.
• Rapid heart rate.
• Low or high blood pressure.
• Trouble breathing.

People with Guillain-Barre syndrome usually experience their most significant weakness within two weeks after symptoms begin.

Types

The symptoms of Guillain-Barre syndrome can vary based on the type. Guillain-Barre syndrome has 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 the body and spreads upward.
• Miller Fisher syndrome (MFS), in which paralysis starts in the eyes. MFS also is associated with an unsteady walk. 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 healthcare professional 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 serious symptoms:

• Tingling that started in your feet or toes and is now moving up your body.
• Tingling or weakness that's spreading quickly.
• Trouble 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 quickly. The sooner treatment is started, the better the chance of a complete recovery.

The exact cause of Guillain-Barre syndrome isn't known. It usually appears days or weeks after a respiratory or digestive tract infection. Rarely, recent surgery or vaccination can trigger Guillain-Barre syndrome.

In Guillain-Barre syndrome, your immune system — which usually attacks only invading organisms — begins attacking the nerves. In AIDP, the nerves' protective covering, known as the myelin sheath, is damaged. The damage prevents nerves from transmitting signals to your brain, causing weakness, numbness or paralysis.

Guillain-Barre syndrome may be triggered by:

• Most commonly, an infection with campylobacter, a type of bacteria often found in undercooked poultry.
• Influenza virus.
• Cytomegalovirus.
• Epstein-Barr virus.
• Zika virus.
• Hepatitis A, B, C and E.
• HIV, the virus that causes AIDS.
• Mycoplasma pneumonia.
• Surgery.
• Trauma.
• Hodgkin lymphoma.
• Rarely, influenza vaccinations or childhood vaccinations.
• COVID-19 virus.

Guillain-Barre syndrome can affect all age groups, but the risk increases as you age. It's also slightly more common in males than females.

Guillain-Barre syndrome affects your nerves. Because nerves control your movements and body functions, people with Guillain-Barre syndrome may experience:

• Trouble breathing. Weakness or paralysis can spread to the muscles that control your breathing. This can potentially be fatal. 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 are common side effects of Guillain-Barre syndrome.
• Pain. One-third of people with Guillain-Barre syndrome experience nerve pain, which may be eased with medicine.
• Trouble with bowel and bladder function. Sluggish bowel function and urine retention may result from Guillain-Barre syndrome.
• Blood clots. People who are not mobile due to Guillain-Barre syndrome are at risk of developing blood clots. Until you're able to walk independently, you may need to take blood thinners and wear support stockings to improve blood flow.
• Pressure sores. You may be at risk of developing bedsores, also known as pressure sores, if you're not able to move. Changing your position often may help avoid this problem.
• Relapse. A small percentage of people with Guillain-Barre syndrome have a relapse. A relapse can cause muscle weakness even years after symptoms ended.

When early symptoms are worse, the risk of serious long-term complications goes up. Rarely, death may occur from complications such as respiratory distress syndrome and heart attacks.

Guillain-Barre syndrome can be hard to diagnose in its earliest stages. Its symptoms are similar to those of other conditions and may vary from person to person.

Your healthcare professional starts with a medical history and thorough physical exam.

Your healthcare professional may then recommend:

• Spinal tap, also known as a lumbar puncture. A small amount of fluid is withdrawn from the spinal canal in your lower back. The fluid is tested for a type of change that commonly occurs in people who have Guillain-Barre syndrome.
• Electromyography. Thin-needle electrodes are inserted into the muscles to measure nerve activity.
• Nerve conduction studies. Electrodes are taped to the skin above your nerves. A small shock is passed through the nerve to measure the speed of nerve signals.

There's no cure for Guillain-Barre syndrome. But two types of treatments can speed recovery and reduce symptoms:

• Plasma exchange, also known as plasmapheresis. Plasma is the liquid portion of part of your blood. In a plasma exchange, plasma is removed and separated from your blood cells. The blood cells are then put back into your body, which makes more plasma to replace what was removed. Plasmapheresis may work by ridding plasma of certain antibodies that contribute to the immune system's attack on the peripheral nerves.
• Immunoglobulin therapy. Immunoglobulin containing healthy antibodies from blood donors is given through a vein. High doses of immunoglobulin can block the damaging antibodies that may contribute to Guillain-Barre syndrome.

These treatments are equally effective. Mixing them or using one after the other is no more effective than using either method alone.

You are also likely to be given medicine to:

• Relieve pain, which can be severe.
• Prevent blood clots, which can develop if you're not mobile.

People with Guillain-Barre syndrome need physical help and therapy before and during recovery. Your care may include:

• Movement of your arms and legs by caregivers before recovery, to help keep your muscles flexible and strong.
• Physical therapy during recovery to help you cope with fatigue and regain strength and proper movement.
• Training with adaptive devices, such as a wheelchair or braces, to give you mobility and self-care skills.

Recovery

Recovery can take months and even years. But most people with Guillain-Barre syndrome experience this general timeline:

• After the first symptoms, the condition tends to worsen for about two weeks.
• Symptoms reach a plateau within four weeks.
• Recovery begins, usually lasting 6 to 12 months. For some people, recovery can take as long as three years.

Among adults recovering from Guillain-Barre syndrome:

• About 80% can walk independently six months after diagnosis.
• About 60% fully recover motor strength one year after diagnosis.
• About 5% to 10% have very delayed and incomplete recovery.

Children rarely develop Guillain-Barre syndrome. When they do, they generally recover more completely than adults.

A diagnosis of Guillain-Barre syndrome can be emotionally hard. Although most people eventually recover fully, the condition is generally painful and requires hospitalization and months of rehabilitation. People with Guillain-Barre syndrome must adjust to limited mobility and fatigue.

To manage the stress of recovery from Guillain-Barre syndrome, consider these suggestions:

• Maintain a strong support system of friends and family.
• Contact a support group, for yourself or for family members.
• Discuss your feelings and concerns with a counselor.

You may be referred to a doctor who specializes in disorders of the brain and nervous system, known as a neurologist.

What you can do

• Write down your symptoms, including any that may seem unrelated to the reason why you scheduled the appointment.
• Make a list of all your medicines, vitamins and supplements.
• Write down your key medical information, including other conditions.
• Write down key personal information, including any recent changes or stressors in your life.
• Write down questions to ask your healthcare team.
• Ask a relative or friend to accompany you, to help you remember what your healthcare professional says.

Questions to ask your doctor

• What's the most likely cause of my symptoms?
• What kinds of tests do I need?
• What kind of treatments do I need?
• How soon do you expect my symptoms to improve with treatment?
• How fully do you expect I'll recover?
• How long will recovery take?
• Am I at risk of long-term complications?

In addition to the questions that you've prepared, don't hesitate to ask other questions during your appointment.

What to expect from your doctor

You're likely to be asked several questions. Being ready to answer them may leave time to go over points you want to spend more time on. You may be asked:

• What are your symptoms, and what parts of your body are affected?
• When did you first begin experiencing symptoms? Did they start suddenly or gradually?
• Do your symptoms seem to be spreading or getting worse?
• If you are experiencing weakness, does it affect one or both sides of your body?
• Have you had trouble with bladder or bowel control?
• Have you had any trouble with vision, breathing, chewing or swallowing?
• Have you recently had an infectious illness?
• Have you recently spent time in a forested area or traveled abroad?
• Have you recently had any medical procedures, including vaccinations?