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5 Things You Should Know About Guillain-Barre Syndrome

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Guillain-Barré syndrome (GBS) is a disorder that causes a person’s immune system to mistakenly attack nerve cells in the body’s peripheral nervous system, the network outside the brain and spinal cord. GBS can cause weakness that ranges from mild to paralysis that can impede the ability to breathe. According to the National Institute of Health, most patients can make a full recovery in even the most severe cases. However, many recovered individuals will continue to deal with some degree of weakness.

The autoimmune disorder is rare, with only 1 in 100,000 people affected each year. Experts say the syndrome seems to affect both sexes equally, but it is more common in adults and older people.

Our contributor, Ashley Walker, shared her experience going through and recovering from GBS. She said, “It was a long nine days of feeling completely helpless and locked up. I didn’t have a window in my room, and they kept telling me I had to stay longer. […] Once I was released, the real work began. I received in-home physical and occupational therapy three days a week until I was strong enough to start outpatient therapy. I was incredibly blessed with all of the therapists and assistants that worked with me.”

Here are five things you should know about Guillain-Barre syndrome:

1. The onset of Guillain-Barre syndrome can be sudden.

The symptoms of GBS can slowly develop over several days or weeks but in some cases, the onset is sudden. According to Johns Hopkins University, when symptoms come on unexpectedly, immediate hospitalization may be needed to stabilize the patient. This is especially true when breathing is compromised. Typical symptoms of the syndrome include:

  • Weakness or tingling in the legs that can spread to arms or upper body
  • Eye muscle or vision issues
  • Pain, especially at night
  • Loss of deep tendon reflexes
  • In serious cases the inability to use muscles at all
  • Heart function and blood pressure may be affected in addition to breathing difficulties

2. The cause of GBS unclear, though doctors believe there are triggers.

Researchers have not identified a single cause for GBS but certain infections seem to be a contributing factor. According to the Centers for Disease Control (CDC), two-thirds of people with GBS had diarrhea or a respiratory illness in the weeks preceding onset of symptoms. They believe being infected with Campylobacter jejuni, a bacteria that causes diarrhea, can be one of the biggest risk factors. Other viruses and bacteria associated with GBS are the flu, cytomegalovirus, Epstein-Barr virus, and Zika virus.

3. GBS is hard to diagnosis right away.

Diagnosing GBS in its early stages can be difficult because symptoms look like many other conditions. To reach a diagnosis, your doctor will take a thorough medical history, including your recent symptoms, and do a clinician exam. Doctors will usually use a spinal tap procedure to measure the amount of pressure in the brain and the spinal canal. A spinal tap, or lumbar puncture, can also be used to take a sample of fluid which can be used to check for infection or other problems.

4. Treatment for GBS focuses relieving symptoms.

Reducing the effects of the disorder is often achieved by the use of plasma exchanges as well as high-dose immunoglobulin therapy. In addition to acute care when symptoms are strongest, treatment also includes supportive care to manage breathing issues and prevent complications such as pneumonia as your body’s nerves repair themselves. About 1 in 3 patients will end up in the intensive unit due to breathing difficulties.

5. Effects of GBS can linger in some cases.

Most people with GBS will make a full recovery with 70% making a recovery without long-term effects. However, the NIH reported about 30% of Guillain-Barré syndrome patients still have lingering weakness two years after the onset of symptoms. They say 15% may require the use of a walker, wheelchair or ankle support.

Header image via monkeybusinessimages/Getty Images

Originally published: September 25, 2020
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