What is Guillain-Barre syndrome?

Guillain-Barre syndrome (pronounced ghee-yan bah-ray) is a rare autoimmune condition where your immune system attacks your peripheral nerves. Peripheral nerves include the nerves outside the brain and spinal cord such as nerves of the face, arms and legs.

What are the symptoms of Guillain-Barre syndrome?

The first symptoms of Guillain-Barre Syndrome are usually weakness or tingling sensations in your legs, which may then progress to your upper body and arms.

Symptoms can be mild or severe. In severe cases. you may develop almost total paralysis. Symptoms can also develop very quickly over a few hours; or slowly over weeks. In most cases, they peak within the first 4 weeks.

You may also have:

• difficulty moving (for example, walking or moving your eyes or face)
• pain
• difficulty controlling your bladder or bowels
• a fast heart rate
• low or high blood pressure
• difficulty breathing or swallowing
• blurred vision

What causes Guillain-Barre syndrome?

The exact cause of Guillain-Barre syndrome is not known, but it usually starts after a viral or bacterial infection.

When should I see my doctor?

You should seek urgent medical attention if you suspect you or someone else has symptoms of Guillain-Barre syndrome.

How is Guillain-Barre syndrome diagnosed?

To diagnose Guillain-Barre syndrome your doctor will:

• ask you about your medical history and symptoms
• examine you and assess how your nerves are working
• refer you for tests — such as a lumbar puncture to check your cerebrospinal fluid or an MRI to help confirm your diagnosis

Diagnosing Guillain-Barre syndrome is difficult, especially during the early stages. This is because the symptoms can vary between people and progress at different rates.

If your symptoms begin more quickly and severely, you may be diagnosed sooner.

How is Guillain-Barre syndrome treated?

In the early stages, most people with Guillain-Barre are treated in hospital so doctors can monitor your breathing. If your breathing muscles are affected, you may need to be on a ventilator in an intensive care unit (ICU) to help you breathe.

Guillain-Barre syndrome can be treated with:

• plasma exchange — which involves removing part of your blood and replacing it with plasma from the blood bank
• intravenous (IV) immunoglobulin therapy — using antibodies from blood donors to alter your abnormal immune response
• medicines — to relieve pain and prevent blood clots
• physiotherapy — which should begin as soon as possible to help prevent blood clots and support your rehabilitation.

There is no cure for Guillain-Barre syndrome.

How long will I have Guillain-Barre syndrome?

Most people eventually fully recover from Guillain-Barre syndrome. even if they were paralysed or needed a ventilator. Rarely, people continue to have some symptoms for life.

Complications of Guillain-Barre syndrome

Complications of the initial phase of Guillain-Barre syndrome can include:

• blood clots — due to reduced movement
• breathing difficulties or pneumonia
• aspiration of food into your lungs — due to swallowing difficulties
• pressure sores
• infections
• delirium

During your recovery and rehabilitation, you may experience:

• fatigue
• chronic pain
• psychological distress that may include mental health conditions such as anxiety, depression

You are also at risk of suffering from differing levels of permanent disability.

Any complications will be managed by a multidisciplinary team including your specialist doctors, nurses, physiotherapists, speech therapists, occupational therapists and dietitians.

Resources and support

• Brain Foundation has more information about Guillain-Barre syndrome.
• Guillain-Barre Syndrome Foundation of Australia offers support and improves the quality of life of people and their families living with Guillain-Barre syndrome
• Rare Voices Australia (RVA) advocates for the best outcomes for Australians living with a rare disease.
• Call healthdirect on 1800 022 222 at any time to speak to a registered nurse (known as NURSE-ON-CALL in Victoria) for more information and advice.