Guillain-Barré syndrome is a rare but serious autoimmune disorder in which the immune system attacks healthy nerve cells in your peripheral nervous system. This leads to weakness, numbness, and tingling. It can eventually cause paralysis. The cause of this condition is unknown, but it’s typically triggered by an infectious illness, such as the stomach flu or a lung infection.
Guillain-Barré is rare, affecting only about 1 in 100,000 Americans, according to the National Institute of Neurological Disorders and Stroke. There’s no cure for the syndrome, but treatment can reduce the severity of your symptoms and shorten the duration of the illness.
There are multiple types of Guillain-Barré, but the most common form is acute inflammatory demyelinating polyradiculoneuropathy (AIDP). It results in damage to myelin. Other types include Miller Fisher syndrome, which affects the cranial nerves.
The precise cause of Guillain-Barré is unknown. According to the Centers for Disease Control and Prevention (CDC), about two-thirds of people with Guillain-Barré develop it soon after they’ve been sick with diarrhea or a respiratory infection. This suggests that the disorder may be triggered by an improper immune response to the previous illness. Learn more about autoimmune disease.
Campylobacter jejuni infection has been associated with Guillain-Barré. Campylobacter is one of the most common bacterial causes of diarrhea in the United States. It’s also the most common risk factor for Guillain-Barré. Campylobacter is often found in undercooked food, especially poultry.
The following infections have also been associated with Guillain-Barré:
- cytomegalovirus, which is a strain of the herpes virus
- Epstein-Barr virus infection, or mononucleosis
- mycoplasma pneumonia, which is an atypical pneumonia caused by bacteria-like organisms
- HIV or AIDS
Anyone can get Guillain-Barré, but older adults and men are most likely to contract it.
In extremely rare cases, people can develop the disorder days or weeks after receiving a vaccination. The CDC and the U.S. Food and Drug Administration (FDA) have systems in place to monitor the safety of vaccines, detect early warning signs of side effects, and record any cases of Guillain-Barré that develop following a vaccination.
In Guillain-Barré syndrome, your immune system attacks your peripheral nervous system. The nerves in your peripheral nervous system connect your brain to the rest of your body and transmit signals to your muscles. The muscles won’t be able to respond to signals they receive from your brain if these nerves are damaged.
The first symptom is usually a tingling sensation in your toes, feet, and legs. The tingling spreads upward to your arms and fingers. The symptoms can progress very rapidly. In some people, the disease can become serious in just a few hours.
The symptoms of Guillain-Barré include:
- tingling or prickly sensations in your fingers and toes
- muscle weakness in your legs that travels to your upper body and gets worse over time
- difficulty walking steadily
- difficulty moving your eyes or face, talking, chewing, or swallowing
- severe lower back pain
- loss of bladder control
- fast heart rate
- difficulty breathing
Guillain-Barré is difficult to diagnose at first. This is because the symptoms are very similar to those of other neurological disorders or conditions that affect the nervous system, such as botulism, meningitis, or heavy metal poisoning. Heavy metal poisoning may be caused by substances such as lead, mercury, and arsenic.
Your doctor will ask questions about specific symptoms and your medical history. Be sure to tell your doctor about any unusual symptoms you’re experiencing and if you’ve had any recent or past illnesses or infections.
The following tests are used to help confirm a diagnosis:
A spinal tap involves taking a small amount of fluid from your spine in your lower back. This fluid is called cerebrospinal fluid. Your cerebrospinal fluid is then tested to detect protein levels. People with Guillain-Barré typically have higher-than-normal levels of protein in their cerebrospinal fluid. This test is also referred to as a lumbar puncture.
An electromyography is a nerve function test. It reads electrical activity from the muscles to help your doctor learn if your muscle weakness is caused by nerve damage or muscle damage.
Nerve conduction tests
Nerve conduction studies may be used to test how well your nerves and muscles respond to small electrical pulses.
Anyone with Guillain-Barré should be admitted to a hospital for close observation. The symptoms can quickly get worse and can be fatal if they aren’t treated. In severe cases, people with Guillain-Barré can develop full-body paralysis. Guillain-Barré can be life-threatening if paralysis affects the diaphragm or chest muscles, preventing proper breathing.
Guillain-Barré is an autoimmune inflammatory process that is self-limiting —that is, it will resolve on its own. The goal of treatment is to lessen the severity of the immune attack and support your body functions (for example, lung function) while your nervous system recovers. Treatment may include:
Plasmapheresis (plasma exchange)
The immune system produces proteins called antibodies that normally attack harmful foreign substances, such as bacteria and viruses. Guillain-Barré occurs when your immune system mistakenly makes antibodies that attack the healthy nerves of your nervous system.
Plasmapheresis is intended to remove the antibodies attacking the nerves from your blood. During this procedure, blood is removed from your body by a machine. This machine removes the antibodies from your blood and then returns the blood to your body.
High doses of immunoglobulin can also help to block the antibodies causing Guillain-Barré. Immunoglobulin contains normal, healthy antibodies from donors.
Plasmapheresis and intravenous immunoglobulin are equally effective. It’s up to you and your doctor to decide which treatment is best for you.
You may be given medication to relieve pain and prevent blood clots while you’re immobile.
You likely will receive physical therapy. During the acute phase of the illness, caregivers will manually move your arms and legs to keep them flexible. Once you begin to recover, physical therapists will work with you on muscle strengthening and a range of activities of daily living (ADLs). This can include personal care activities, like getting dressed.
Guillain-Barré affects your nerves. The weakness and paralysis that occurs can affect multiple parts of your body. Complications may include difficulty breathing when the paralysis or weakness spreads to muscles that control breathing. You may need a machine called a respirator to help you breathe if this occurs.
Complications can also include:
The recovery period for Guillain-Barré can be long, but most people recover fully.
In general, symptoms will get worse for two to four weeks before they stabilize. Recovery can then take anywhere from a few weeks to a few years. People with Guillain-Barré usually recover in 6 to 12 months.
About 80 percent of people affected by Guillain-Barré can walk independently at six months, and 60 percent recover their regular muscle strength. For some, though, recovery takes longer. Around 30 percent still experience some weakness after three years. About 3 percent of people affected by Guillain-Barré will experience a relapse of their symptoms, like weakness and tingling, even years after the original event.
In rare cases, the condition can be life-threatening, especially if you don’t get treatment. Factors that may lead to a worse outcome include:
- old age
- severe or rapidly progressing illness
- delay of treatment, which can result in more nerve damage
- prolonged use of a respirator, which can predispose you to pneumonia
Blood clots and bedsores that result from being immobilized can be reduced. Blood thinners and compression stockings may minimize clotting. Frequent repositioning of your body relieves prolonged body pressure that leads to tissue breakdown, or bedsores.
In addition to your physical symptoms, you may experience emotional difficulties as well. It can be challenging to adjust to limited mobility and an increased dependence on others. You may find it helpful to talk to a therapist.