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How Common Is Guillain-Barré Syndrome, and How Do You Get It?

Sarah Pozniak, MDMandy Armitage, MD
Written by Sarah Pozniak, MD | Reviewed by Mandy Armitage, MD
Published on November 1, 2021

Key takeaways:

  • Guillain-Barré syndrome is a rare autoimmune condition that causes nerve damage.

  • Its exact cause is unknown, but it usually starts after infection with a bacteria or virus.

  • Guillain-Barré syndrome has been linked to the flu vaccine, but the risk of getting it after vaccination is extremely low.

01:27
Reviewed by Preeti Parikh, MD

Guillain-Barré syndrome (GBS) is an autoimmune disease that happens when the body’s immune system causes nerve damage. Only about 3,000-6,000 people get GBS each year in the U.S., making it very rare. It’s often triggered by infection with a bacteria or virus and can lead to pain, muscle weakness, and even paralysis. 

GBS can be life-threatening, but treatment is available. Most people will recover in weeks to months, but lasting nerve damage can occur. Keep reading to find out more about the symptoms of GBS, how it is treated, and its connection to vaccines.

What are the symptoms of Guillain-Barré syndrome? 

GBS affects the peripheral nervous system, or the nerves outside of the brain and spinal cord (central nervous system). The symptoms of GBS usually start with weakness in both legs. Over days to weeks, the weakness progresses to other parts of the body. Sometimes the symptoms will start in the arms or face rather than in the legs. Most symptoms will progress quickly over two weeks and reach their full progression after four weeks.

Weakness in the arms and legs makes it difficult to move and walk. How bad the weakness is can vary. GBS can make movement more difficult or, in more severe cases, can cause paralysis where movement is impossible. 

Other nervous system signs and symptoms seen in GBS include:

  • Paresthesias: A “pins-and-needles,” tingling, or burning sensation in the feet or hands caused by peripheral nerve damage. This symptom often comes with the weakness seen at the start of GBS. 

  • Decreased or absent reflexes: You won’t notice this yourself, but a healthcare provider may check your reflexes with a reflex hammer and find that they’re abnormal.

  • Sensory loss: Decreased ability to feel through the skin. This is often seen with weakness in GBS. You may notice it, and your healthcare provider can also test for it while examining you.

  • Pain: Can be muscular (in the low back, arms, legs) or in the joints. It can come from paresthesias or may radiate into the arms or legs from inflammation in the spine. About a third of people with GBS will still report pain 1 year after their symptoms started.

What body systems are affected by Guillain-Barré syndrome?

GBS mainly affects the nervous system. But because the nervous system controls most of the body’s functions, GBS can have many effects. Examples include: 

  • Respiratory: A serious complication of GBS is respiratory failure, or the inability to breathe on your own. This happens when the nerves that help us breathe are damaged. It can be life-threatening: People with this complication need to be hospitalized and treated with mechanical ventilation. About 20% of people with GBS will have respiratory failure. 

  • Cardiovascular: GBS can cause abnormal heart rhythms (arrhythmias), weakened heart muscle (cardiomyopathy), and changes in blood pressure and heart rate. These can be serious and need to be treated in the hospital.

  • Gastrointestinal: The nerves that control the gastrointestinal tract can be affected. Diarrhea, bowel incontinence, or ileus (when the intestines slow down) can happen in GBS.  

  • Urinary: GBS can cause urinary retention, which is when the bladder doesn’t empty properly because the nerves controlling it are damaged.

How is Guillain-Barré syndrome diagnosed?

There is not one test used to diagnose GBS. The diagnosis is usually made based on your symptoms and physical exam.

That said, testing may be done to rule out other causes. This can include imaging, such as an MRI of the brain or spine. It can also include blood work and testing of the cerebrospinal fluid (CSF), which is the fluid that surrounds the brain and spinal cord. People with GBS will often have elevated protein levels in their CSF. 

Electrodiagnostic studies like electromyography (EMG) and nerve conduction studies (NCS) can also be helpful. They measure your muscles’ electrical activity and how well signals travel through nerves. These tests can help determine the location of nerve damage.  

Diagnosing GBS can be challenging, because the symptoms do not always develop in everyone the same way. There are different variations of GBS with different symptoms that can overlap. Guidance from the National Institute of Neurological Disorders and Stroke (NINDS) can help healthcare providers make the diagnosis. The criteria have been updated over time as we’ve learned more about GBS. 

What are the most common ways people develop Guillain-Barré syndrome?

Most people with GBS had some type of infection in the 4 to 6 weeks before their symptoms started. The infection triggers the immune system, leading to the attack on the peripheral nerves. It’s not clear exactly why this happens, and not everyone that gets these infections will get GBS. Viruses and bacteria that can cause infection and lead to GBS include:

Upper respiratory tract infections (involving the nose, sinuses, throat) and diarrhea are the most common illnesses seen before GBS, affecting about 66% of people. Campylobacter jejuni infection causes diarrhea and is a common trigger. Other, less common, triggers for GBS include surgery, injuries, bone marrow transplant, and certain medications targeting the immune system. 

Who’s at risk?

GBS can affect anyone during their lifetime. It’s possible to get GBS at any age, but it’s more common in older adults over age 50 and more common in men than women.

How is Guillain-Barré syndrome related to vaccines?

GBS was first linked to the flu vaccine in the 1970s when increased cases were seen in vaccinated people. Since that time, more research has been done, and a clear connection has not been found between GBS and the flu vaccine. Some studies have shown increased cases after flu vaccination, while others have not. In the case of other vaccines (such as MMR, HPV, quadrivalent meningococcal), GBS has not been strongly linked.

How likely are you to get Guillain-Barré syndrome from a vaccination?

Not very likely. In the case of the flu vaccine, there are an additional one to two cases of GBS per million shots of vaccine given each year. This is a very small risk, considering that your chance of getting GBS from an influenza infection is actually higher. One estimate is that there are about 17 cases of GBS per 1 million people hospitalized with the flu. This means the flu shot can actually protect you from getting GBS by preventing infection with the influenza virus.

How do you treat Guillain-Barré syndrome?

GBS can be a serious disease, but the good news is there is treatment for it. If you have GBS, you will most likely be treated in a hospital. While you’re there, your breathing, blood pressure, heart rate, and neurological symptoms will be closely monitored. This is because GBS can get worse after the symptoms first start. Serious complications, like breathing problems and heart problems, need to be treated in the intensive care unit (ICU). 

Most people with GBS have symptoms that get worse over 2 to 4 weeks before they start to improve. Treatment can lead to a quicker and better recovery. There are two treatments used for GBS that target the immune system:

  • Intravenous immune globulin (IVIG): IVIG is given as an infusion (into the vein) each day for about 5 days. It contains antibodies from healthy, human plasma donors and is used to treat many illnesses, including GBS. The healthy antibodies in the IVIG counteract your immune system's attack on the peripheral nerves, helping you recover faster.

  • Plasma exchange: To do plasma exchange, large IVs are inserted into your veins and plasma is removed from your blood and replaced with new plasma. Doing this removes unhealthy antibodies from your body that are causing the nerve damage. Multiple treatments are usually given over a few days. Plasma exchange can lower the level of disease-causing antibodies by up to 75%

Both IVIG and plasma exchange are equally effective in treating GBS. The treatment you receive will depend on what is available at your hospital and any other health issues or complications you have. It’s important to know that these treatments don’t stop GBS from progressing or heal the nerve damage, but they do help people recover more completely.

What’s the prognosis like for someone with Guillain-Barré syndrome?

GBS can be a serious, life-threatening disease. It’s more likely to be fatal in older people with severe disease that affects the heart or lungs. That said, it’s important to remember that GBS is rare. Of the few thousand people who get it each year in the U.S., most people will do well and recover in the first year. 

Immune system treatments, like IVIG and plasma exchange, can speed up the recovery process. There are some people who may not respond to these treatments right away or who may respond at first and then have their symptoms get worse again.

Some people may have ongoing symptoms of pain, weakness, and fatigue for a number of years. Anxiety and depression can also be issues for people living with the long-term effects of GBS. Help and support are available through organizations, such as the GBS/CIDP Foundation International. You can find a local chapter here.

Can Guillain-Barré syndrome be cured?

No single cure for GBS exists, but there are treatments to manage and improve the symptoms. People with GBS may live with long-term symptoms of the disease, but getting GBS again after you have already had it is rare.

The bottom line

GBS is a rare but serious autoimmune disease that affects the nervous system. Research does not support vaccines as a cause of GBS. In fact, most cases of GBS are triggered by infections with bacteria or viruses – some of which can be prevented through vaccination.

References

American Academy of Allergy, Asthma, & Immunology. (2020). Preparing for intravenous immunoglobulin (IVIG) infusion therapy.

American Heart Association. (2016). About arrhythmia.

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