Guillain-Barre syndrome

Información en español Title

Other Names:

Acute autoimmune peripheral neuropathy; GBS; Acute immune-mediated polyneuropathy; Acute autoimmune peripheral neuropathy; GBS; Acute immune-mediated polyneuropathy; Acute inflammatory demyelinating polyneuropathy; Acute inflammatory demyelinating polyradiculoneuropathy; Acute inflammatory neuropathy; Acute inflammatory polyneuropathy; Landry-Guillain-Barre-Strohl syndrome; Landry's ascending paralysis; Post-infective polyneuritis; Guillain-Barré syndrome; Guillain-Barré-Strohl syndrome See More

Categories:

Nervous System Diseases

Summary Summary

Guillain-Barré syndrome (GBS) is a rare syndrome in which the body’s immune system attacks part of the peripheral nervous system. The peripheral nervous system carries signals from the brain to the muscles. Symptoms of GBS include muscle weakness, numbness, and tingling sensations, which can increase in intensity until the muscles cannot be used at all (paralysis).^[1]

The exact cause of Guillain-Barré syndrome is unknown. In most cases, GBS occurs a few days or weeks after symptoms of a viral infection. In rare cases, GBS may run in families.^[2] A diagnosis of GBS is suspected when a person has symptoms suggestive of the syndrome. A variety of tests, including a spinal tap, may be completed to confirm the diagnosis. Treatment options may include plasma exchange (plasmapheresis) and immunoglobulin therapy.^[1]^[3]

Last updated: 12/14/2017

Symptoms Symptoms

Signs and symptoms of Guillain-Barré syndrome (GBS) include muscle weakness, muscle pain, numbness, and tingling sensations. GBS can affect people of any age. The first symptoms of GBS typically begin in the lower legs. The symptoms can then spread to the muscles of the upper body. Typically, the symptoms continue to worsen over the first 2-3 weeks after they first begin. In some cases, the symptoms of GBS can increase in intensity until the muscles cannot be used at all (paralysis).^[1]

Other symptoms of GBS can include difficulty with bladder control or bowel function, difficulty breathing, blood pressure, and heart rate. Some people with GBS have facial droop, double vision, difficulty speaking or swallowing, and changes in eye movements. As the disease progresses, the muscle weakness may worsen to affect the muscles that are important for breathing.^[3]^[4]

Last updated: 10/4/2018

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

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Medical Terms	Other Names	Learn More: HPO ID
Percent of people who have these symptoms is not available through HPO
Acute demyelinating polyneuropathy		0007131

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Do you have more information about symptoms of this disease? We want to hear from you.

Last updated: 10/1/2018

Do you have updated information on this disease? We want to hear from you.

Cause Cause

The exact cause of Guillain-Barré syndrome (GBS) is not well-understood in all cases of the syndrome. GBS can occur at any age, but it is especially common in people older than 50-years-old. GBS is considered to be an autoimmune disease, meaning that it occurs when the immune system mistakenly attacks tissues of its own body. Specifically, the immune system of people with GBS targets the nerves of the peripheral nervous system. The peripheral nervous system is the part of the nervous system that is outside of the brain and spinal cord. It is responsible for carrying signals from the brain to the muscles of the body. When the immune system attacks the peripheral nervous system, signals cannot be sent from the brain to the muscles as quickly as they should. This causes the signs and symptoms associated with GBS.^[1]

In some cases, people who develop GBS report that they were sick with a gastrointestinal or upper respiratory illness a few days or weeks before the symptoms of GBS began. These infections can be caused by viruses such as cytomegalovirus, Epstein-Barr virus, flu virus, or Zika virus or bacteria such as Campylobacter jejuni.^[3]^[5] However, only a small number of people who have these infections develop GBS.^[6]

On very rare occasions, people have developed GBS within a few days or weeks after receiving a vaccination. For example, in 1976, there were several cases in which people developed GBS after getting the swine flu vaccine. The link between GBS and the flu vaccine in other years is unclear. It is believed that the risk of developing GBS after seasonal flu vaccines is about one in a million. Studies suggest that a person is more likely to develop GBS after having the flu than after getting a vaccine.^[5]^[7]

There are also case reports that suggest a link between GBS and certain medications or surgical procedures. However, a definitive association between medications or surgery and GBS has not been established.^[3]

Last updated: 12/14/2017

Inheritance Inheritance

Changes (mutations) in a particular gene are not known to be associated with Guillain-Barré syndrome (GBS). In most cases, a person who has GBS is the only person that has been affected in the family. Therefore, it is not thought that GBS is passed directly from parent to child. In rare cases, instances of multiple people within the same family having GBS have been reported. It is thought that these cases may be caused by family members sharing normal variants in certain genes that may increase the risk to develop GBS.^[2]^[6]

Last updated: 12/14/2017

Diagnosis Diagnosis

A diagnosis of Guillain-Barré syndrome (GBS) is suspected when a person has signs and symptoms consistent with the syndrome. Doctors may identify symptoms such as muscle weakness on both sides of the body that starts from the lower leg muscles and spreads upwards. Doctors may also look for other signs of GBS such as relatively rapid progression of symptoms and loss of muscle reflexes.^[1]

Tests can be completed to confirm a diagnosis of GBS and rule out other diseases that can cause muscle weakness. These tests may include nerve conduction velocity tests to measure how quickly signals are being sent through the peripheral nervous system. An electromyogram (EMG) may be ordered to determine if the muscles are responding to signals correctly. A lumbar puncture (spinal tap) may also be ordered, as people with GBS have high levels of protein in the cerebral spinal fluid (CSF) that surrounds the spine.^[3]

Last updated: 12/14/2017

Treatment Treatment

Unfortunately, there is no cure for Guillain-Barré syndrome (GBS). However, symptoms of the syndrome can be improved with treatments including plasma exchange therapy and immunoglobulin therapy. Both of these therapies can help prevent the immune system from continuing to attack the peripheral nervous system.^[1]^[3] In some cases, corticosteroids have been used to try to alleviate symptoms of GBS. However, it has not been proven that steroids can help speed recovery.^[3]

People who have GBS may be admitted to the hospital for treatment and to reduce the risk of complications. In some cases, other treatments may be necessary to prevent complications of GBS including pain medications and heparin to reduce the risk of blood clots. Some people with GBS may require help breathing with a ventilator.^[3] Physical, occupational, and speech therapy may be recommended to help people fully recover from GBS.^[3]

Last updated: 12/14/2017

Prognosis Prognosis

Most people who have Guillain-Barré syndrome (GBS) regain muscle strength within a few months after diagnosis and treatment. However, for some, severe muscle weakness may continue even after treatment. Some people may have a slower recovery from the symptoms of GBS, and they may be in the hospital or on a ventilator for a longer time. For these people, recovery may take a few years. About 30% of people who had GBS continue to have muscle weakness years after the first symptoms of GBS.^[3]^[8]^[9]

In rare cases, people have passed away from complications of GBS. Causes of death may include acute respiratory distress syndrome, sepsis, pulmonary emboli, and unexplained cardiac arrest.^[8] Some people with GBS may relapse after an original improvement of symptoms.^[10] The risk of relapse appears to be higher in people who have had a later onset of treatment, a longer-lasting disease, and other medical problems occurring at the same time.^[3]

For many with GBS, suddenly relying on family members and medical professionals to help with tasks required for daily living can be devastating. In some cases, people with GBS may suffer from anxiety or depression.^[3] It is important for people with GBS and their family members to tell their doctor about signs and symptoms of depression, especially if the depression is long-lasting and does not improve as the physical symptoms of GBS improve.

Last updated: 12/14/2017

Find a Specialist Find a Specialist

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

GBS/CIDP Foundation International has a Directory of Clinical Centers of Excellence that specialize in the diagnosis and treatment of Guillain-Barré syndrome and CIDP.
To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are related to Guillain-Barre syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

GBS/CIDP Foundation International
375 East Elm Street, Suite 101
Conshohocken, PA 19428
Toll-free: 866-224-3301
Telephone: 610-667-0131
Fax: 610-667-7036
E-mail: info@gbs-cidp.org
Website: http://www.gbs-cidp.org
Guillain Barré Syndrome Support Group NZ Trust
30 Higgs Road
PO Box 21
Mapua 7005
Nelson, New Zealand
Telephone: (03) 540 3217
E-mail: tonypearson@xtra.co.nz
Website: http://www.gbsnz.org.nz/

Social Networking Websites

Guillain-Barré Syndrome Survivors
Website: https://www.facebook.com/GBS.Awareness/

Organizations Providing General Support

American Autoimmune Related Diseases Association (AARDA)
22100 Gratiot Avenue
Eastpointe, MI 48021
Toll-free: 800-598-4668
Telephone: 586-776-3900
Fax: 586-776-3903
E-mail: aarda@aarda.org
Website: https://www.aarda.org/
Christopher and Dana Reeve Foundation
636 Morris Turnpike
Suite 3A
Short Hills, NJ 07078
Toll-free: 800-225-0292
Telephone: 973-379-2690
Fax: 973-912-9433
E-mail: InfoSpecialist@ChristopherReeve.org
Website: http://www.christopherreeve.org

Do you know of an organization? We want to hear from you.

Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Community Resources

The Job Accommodation Network (JAN) has information on workplace accommodations and disability employment issues related to this condition. JAN is a service of the Office of Disability Employment Policy in the U.S. Department of Labor.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

You can obtain information on this topic from the Centers for Disease Control and Prevention (CDC). The CDC is recognized as the lead federal agency for developing and applying disease prevention and control, environmental health, and health promotion and education activities designed to improve the health of the people of the United States.
Genetics Home Reference (GHR) contains information on Guillain-Barre syndrome. This website is maintained by the National Library of Medicine.
MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The Merck Manuals Online Medical Library provides information on this condition for patients and caregivers.
The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss Guillain-Barre syndrome. Click on the link to view a sample search on this topic.

News & Events News & Events

News

NCATS Rare Diseases Are Not Rare! Challenge
October 9, 2018
The NIH Undiagnosed Diseases Network Expands
September 26, 2018

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

I had Guillain-Barré in 2006 and initially recovered well in the first 4 years. Then the muscle weakness and pain suddenly got worse again over the following years to the point of me being practically housebound now. Doctors have no idea why this is happening. Is there any explanation? See answer
I have just recovered from Guillian-Barre syndrome. I want to know if it will affect me again? See answer
My mother was diagnosed with Guillain-Barre syndrome after having a flu shot in 2001. Does this make me more at risk of developing Guillain-Barre syndrome if I have a flu shot? See answer

Have a question? Contact a GARD Information Specialist.