Guillain-Barré syndrome

Guillain-Barré syndrome (GBS) is a rare neurological disease that occurs when the body's immune system attacks part of its own nervous system. It usually develops quickly, resulting in symptoms of intense pain, numbness, and tingling in the arms and legs.    

GBS should be considered a medical emergency. Immediate medical attention can help prevent paralysis and other more serious symptoms. Penn Medicine doctors provide expert care to diagnosis and treat GBS for the best possible outcome.

GBS affects each person differently. Some people have mild symptoms with temporary weakness, while others develop severe, life-changing symptoms resulting in paralysis and inability to breathe on their own.   

The most common symptoms of GBS are:   

• Intense pain   
• Numbness and tingling in the arms and legs   
• General weakness   
• Difficulty breathing   

Symptoms of GBS in children include difficulty walking and refusing to walk. These symptoms may disappear before major, longer-term symptoms develop. If left unchecked, Guillain-Barré syndrome symptoms can progress within hours, days, and even weeks.  

Fortunately, even the most severe cases aren’t necessarily permanent. Most people recover in time, though some may still experience a degree of muscle weakness or nerve damage.

The causes of Guillain-Barré syndrome are unknown, but it generally occurs in adults more often than children. It is not contagious nor inherited.    

While there are many things that can trigger your body’s immune system to attack itself, GBS often starts after a lung infection or stomach virus. About 50 percent of cases occur soon after something as common as the flu, food poisoning, or surgery. 

Diagnosing a neuromuscular illness like Guillain-Barré syndrome can be a complex process. A broad range of diseases can affect nerves and muscles, and often produce similar symptoms, such as weakness and numbness.    

To rule out other more common diseases with similar symptoms, blood tests are generally performed to look for a low level of potassium. Additionally, an abnormally low level of sodium is often found in patients with GBS, due to a hormone secretion that causes water retention.    

Additional tests for GBS include:   

• Biochemical and genetic testing 
• Computerized tomography (CT) scan 
• Magnetic resonance imaging (MRI)
• Nerve and muscle biopsy   

Tests that confirm Guillain-Barré syndrome are: 

• Lumbar puncture (spinal tap) 
• Electrical nerve and muscle function/conduction studies   

When you are being evaluated for GBS, your doctor will review your complete medical history and perform a comprehensive neuromuscular exam. At Penn Medicine, our neuromuscular specialists are experts at diagnosing and treating neurological diseases—including rare diseases, like GBS.

Recovery from Guillain-Barré syndrome symptoms often takes 6 to 12 months though it can take years to fully recover from any nerve damage caused by the disease. As your body recovers and damaged nerves start to heal, you'll receive supportive care from your Penn Medicine team of neurologists, board-certified neuromuscular specialists, and psychiatrists.

Your doctor may recommend some of these therapies to help with your recovery:

• Physical therapy to help maintain your range of movement and keep your muscles flexible
• Medication to help keep blood clots from forming
• Special exercises to help return weaker muscles to their original ability
• Occupational and vocational therapy to help you adapt to any lasting effects of the disease, particularly with new equipment or technology

Guillain-Barré syndrome research has focused on whether people who’ve received one advanced infusion treatment might benefit from a second infusion.     

Some medicines in development, including a targeted antibody called eculizumab, have also shown promise in laboratory research. Additionally, because GBS is an autoimmune disease, certain medicines that block, inhibit, or attack autoimmune diseases, like lupus and rheumatoid arthritis, may be effective.