Guillain-Barré syndrome (GBS) is a rare medical condition that affects the nerves outside the brain and spinal cord. Although it can be frightening because it often causes people to have some type of paralysis, Guillain-Barré (pronounced: GHEE-yan bah-RAY) syndrome is very rare: It only affects 1 or 2 people in every 100,000. Most of the people who do get Guillain-Barré syndrome recover and return to their normal lives and activities.
What Is Guillain-Barré Syndrome?
Experts believe that GBS is an autoimmune disorder. These happen when the immune system, which usually protects us by attacking any invading organisms that may harm the body, mistakes the body’s own cells for foreign material and begins to attack them. Guillain-Barré can affect people of any age, but it becomes more common with increasing age.
The nerves outside the brain and spinal cord are called the peripheral nerves. They transmit signals from our brain to our muscles telling them to move. They also transmit sensory signals (such as touch, pressure, temperature and pain) from our body to our brain. When GBS causes these nerves to be temporarily damaged, the signals are interrupted. As a result, someone with GBS may have weakness or problems moving, or may feel numbness and tingling in the arms or legs.
GBS is rare, but can get serious: If the muscles in the chest are affected, for example, it may interfere with the ability to breathe and require the person to use a ventilator for a while. The good news is that the paralysis that goes with GBS is usually temporary.
What Causes It?
No one knows yet what causes GBS or why it affects some people and not others. GBS is called a syndrome because, like irritable bowel syndrome or other syndromes, doctors diagnose it based on a collection of symptoms.
Although no one knows what causes GBS, scientists do have some theories about the syndrome and why it surfaces in the body. For example, doctors report that more than half of all GBS cases seem to occur after a viral or bacterial infection like those that cause sore throats or diarrhea. Occasionally, minor surgery or something else might trigger the GBS symptoms.
There’s no reason to worry that a typical sore throat or a minor surgery is going to trigger an autoimmune response and lead to GBS, though. Colds, sore throats, and the occasional bout of diarrhea are fairly predictable parts of everyone’s lives; getting GBS, thankfully, is not.
Signs and Symptoms
When GBS does strike, it can progress quickly, with the most severe symptoms taking place as soon as 2 weeks after the first signs appear. The first symptoms, such as weakness or tingling in the legs, can show up within a day. These sensations can then spread to the arms and upper body, and the person may feel increasingly tired. Sometimes, someone with GBS also begins to lose his or her reflexes (for example, the person may not have the knee-jerk reaction that happens when a doctor tests reflexes).
In the most severe cases of Guillain-Barré syndrome, the symptoms continue to increase until certain muscles become completely paralyzed. At this stage, the paralysis can interfere with breathing or swallowing, so a person usually has to go to the hospital. It can be frightening, but even at this stage doctors expect most people to recover completely.
How Is GBS Diagnosed?
As with other medical conditions, doctors rely on a person’s medical history and a physical exam to diagnose GBS. If a doctor suspects GBS, he or she will ask some detailed questions, such as whether the symptoms appear on both sides of the body (which is typical with GBS), whether the symptoms happened quickly and got progressively worse, and whether the symptoms started in the feet and legs and spread to the upper body and arms.
Doctors may also do a few tests to confirm that a patient has GBS, including a spinal tap. Two other tests — an electromyogram (EMG) and a nerve conduction velocity (NCV) test — can figure out how well nerves are sending signals down to the arms and legs.
How Is It Treated?
People with GBS are usually hospitalized so doctors and nurses can monitor their body functions. Because the way GBS progresses can be unpredictable, some patients are cared for in an intensive care unit (ICU). This allows doctors and nurses to keep an eye on vital signs, such as blood pressure or heart rate, and to step in and keep the body functioning until the nervous system can take over again.
In the hospital, somebody with GBS might also receive treatment to help speed recovery. One treatment for GBS is plasmapheresis (pronounced: plaz-muh-fuh-REE-sus), where blood is drawn from the body and then processed so that the red and white blood cells are separated from the plasma, the liquid portion of the blood. Then these cells are returned to the body without the plasma. Scientists think that this process helps remove some of the harmful antibodies and seems to reduce the severity and length of GBS symptoms.
Another treatment for GBS is immunoglobulin therapy, which involves using healthy antibodies (immunoglobulins) from blood donors to help block the harmful antibodies in the body of the person with GBS.
How long someone with GBS has to stay in the hospital depends on how serious the condition is. Some hospital stays last only a few days; other people are hospitalized for several weeks.
Recovering From GBS
Even after coming home from the hospital, it may take a while before a person feels as good as new. Some people with GBS might need to be in a wheelchair or use a walker until they regain their strength. Many will need physical therapy to get their bodies moving properly again.
Recovering from GBS takes patience: People may feel some weakness as long as 3 years after having the condition. But the good news is most people do eventually recover from even the most severe cases of GBS.
Because GBS strikes so suddenly and without warning, it can be difficult to deal with and adjust to the recovery period. Doctors may recommend that a person see a counselor or therapist or join a support group as a way to talk through the many confusing feelings that can go with having the syndrome. People recovering from GBS usually have tons of questions, such as “Why me?” and “Will it come back?”
GBS can really impact a person’s lifestyle, and it may take a while before people are able to participate fully in their favorite sports or activities. This can feel particularly hard for teens who are usually very active.
For people who have gone through the ordeal of a slow recovery, it’s natural to worry that the GBS might come back. Only a very small number of the people who have GBS get it again, though. One reason people worry about the syndrome repeating itself is because people recovering from GBS often notice symptoms that are similar to those they reported when they first had GBS, such as tingling in the hands or feet. In most cases, though, these symptoms are not a sign that the GBS is recurring. They’re more likely associated with some lingering nerve trouble after the initial bout of GBS.
As with any medical condition, if you’ve had GBS and you notice some of the same symptoms coming back, talk to your doctor.
It may take a while before a person who has had GBS is ready to get back to sports and other physical activity, but there’s a lot that medical experts can do to help make the road to recovery smoother and faster.
Reviewed by: Elana Pearl Ben-Joseph, MD
Date reviewed: March 2013