Patient Handout – GBS

What is Guillain-Barre Syndrome?

By Thais Langer, PhD

Guillain-Barre Syndrome (GBS) is a rare autoimmune disease affecting one to two in every 100,000 people every year.

GBS occurs when the immune system mistakenly attacks the peripheral nervous system – the network of nerves connecting the brain and spinal cord to the rest of the body – causing inflammation and unexplained sensations.

GBS is more common in men. Although it can occur at any stage of life, chances increase with age. It can have mild to serious symptoms affecting the person´s ability to walk or breathe.

What are the risk factors for Guillain-Barre Syndrome?

The risk factors for GBS are not fully understood. Most people with GBS describe symptoms of infection at least six weeks before the disease is diagnosed, indicating it may be triggered by infection.

Increases in GBS cases have been observed during outbreaks of infectious diseases, such as the Zika epidemic during 2015/16 and the COVID-19 pandemic in 2020/21.

Limited studies also suggest that trauma and injury (post-surgery, heatstroke and intracranial bleeding) may also prompt the disease.

What are the signs and symptoms of Guillain-Barre Syndrome?

Symptoms usually appear within days to a maximum of four weeks of GBS onset. GBS has many variants but the most common form often starts with:

  • Tingling and burning sensation in the extremities
  • Weakness staring in the legs and progressing to the arms

Followed by:

  • Difficulties swallowing or speaking
  • Abnormal heartbeat
  • Constipation and loss of bladder control
  • Lack of coordination
  • Low reflex and muscle control upon stimuli
  • Muscular and back pain, especially at night

These symptoms are similar in children and they may refuse to walk.

The Miller-Fisher syndrome (MFS) is one of the main variants of GBS and is characterized by:

  • Loss of muscle coordination
  • Loss of balance, clumsiness
  • Paralyses of the muscles in the eye (causing blurry vision and difficulty moving the eyes)

Distinct and isolated symptoms may appear due to other GBS variants, such as:  

  • Weakness without sensory loss (such as weakness with no blurry vision)
  • Weakness limited to the cranial area, causing facial paralyses on both sides
  • Weakness limited only  to arms or legs, separately
  • Weakness on only one side of the body

GBS progresses fast and symptoms may reach their peak within two weeks. The most serious complications occur during the acute and recovery phase. It is important to be aware of:

  • Difficulties in breathing
  • Inability to walk without help
  • Severe swallowing control
  • Blood pressure and heart arrhythmia

If you notice progressive weakness of legs and arms without any other obvious cause, consider talking to your physician about testing for GBS. If these symptoms follow an infectious disease, trauma or injury, consult a specialist immediately.

How is Guillain-Barre Syndrome diagnosed?

To date, there is no specific test to diagnose GBS. The diagnosis is mostly based on the individual characteristics and known clinical signs and symptoms of typical and atypical forms.

Some laboratory tests are used to support diagnoses, such as cerebral spinal fluid (CSF) analyses and electrodiagnostic tests.  

Analysis of cerebral spinal fluid (CSF) is used to rule out other diseases. Elevated protein levels and normal cell count in CSF might indicate GBS, but the absence of high protein levels does not rule it out either.

Electrodiagnostic tests are not required but recommended by a consensus statement from worldwide specialists published in 2019. An electrodiagnostic test can identify different variants of GBS. If the test shows normal measurements during early onset (1 week), it is recommended to repeat it in 2 – 3 weeks.

Often, a recent viral infection followed by diarrhoea is also used for diagnosis. The absence of an infectious illness, however, does not exclude GBS since many infections may occur unnoticed.

How is Guillain-Barre Syndrome treated?

There is no specific medication that is effective to treat GBS. The most effective treatment options showing equal efficiency are plasma exchange (PE) and immunoglobulin therapy (IVIg). Since IVIg is easier to administer, requires less monitoring and causes less discomfort, it is usually the first therapy choice.

Antibiotics might also be used in case of ongoing infection. However, the onset of GBS commonly occurs after an infection has been cleared.

There are no contraindications against either PE or IVIg therapies for children and pregnant women. Because PE requires additional monitoring, IVIg might be preferred in this case as well.

Around 80% of people recover extensively within the first year of disease onset.

What is the plan if you have Guillain-Barre Syndrome?

Although there is no cure for GBS, around 80% of people regain the ability to walk independently within six months and show extensive recovery within one year following treatment.  

If you have GBS, you will need to monitor your respiratory function, muscle strength (neck, arms and legs), swallowing and coughing abilities, heart rate, blood pressure, bowel and bladder control. The frequency of monitoring will depend on the phase and severity of each case and is determined for each individual person. It is important to keep constant monitoring during the recovery phase.

The most common long-term residual symptoms are usually muscle pain, fatigue and weakness of arms and legs. Rehabilitation programmes with physiotherapists are highly recommended and may speed recovery. These symptoms usually go away within five years from disease onset.

GBS that comes back is rare but may occur in 2 – 5% of patients, so constant awareness is crucial.

Where to get help and more information

Consult your physician or specialist if you notice any symptoms, or if you have the disease and symptoms are reoccurring. You can find more help and information at the below resources: