Guillain-Barré syndrome

There are 4 types of Guillain-Barré syndrome.

Acute inflammatory demyelinating polyradiculoneuropathy (AIDP)

AIDP is the most common type. It usually starts with muscle weakness in the legs, which spreads upwards.

Miller Fisher syndrome (MFS)

With MFS, the loss of muscle function (paralysis) starts in the eyes. It can lead to double vision, droopy eyelids and uncoordinated or imbalanced movement.

Acute motor axonal neuropathy (AMAN)

With AMAN, the person experiences sudden paralysis and loss of reflexes with minimal or no sensory loss. 

Acute motor-sensory axonal neuropathy (AMSAN)

With AMSAN, the person experiences a rapid onset of muscle weakness and sensory loss. It progresses quickly and can lead to breathing difficulties. 

The exact causes of Guillain-Barré syndrome are not known, but doctors think it may be started by:

• food poisoning (particularly from Campylobacter bacteria)
• the flu
• viral infections
• giving birth
• surgery.

Guillain-Barré syndrome is not passed down from parent to child and you cannot catch it or pass it on to someone else.

Symptoms usually develop over hours or days. They usually start in your feet and hands before spreading to your arms and legs.

At first you may have:

• numbness or tingling
• muscle weakness
• pain
• problems with balance and coordination.

These symptoms usually affect both sides of the body at the same time. They may get worse over the next few days or weeks. They are usually at their most severe within 4 weeks, before gradually improving.

You may be only mildly affected, or you may have:

• difficulty walking without help
• an inability to move your legs, arms or face
• difficulty breathing
• blurred or double vision
• difficulty speaking
• problems swallowing or chewing
• difficulty going to the toilet.

Your healthcare provider will ask when your symptoms started and how they have changed. They may ask if you have had any recent infections.

You may need to have tests such as a lumbar puncture and a nerve conduction study, which measures how well and how quickly your nerves conduct electrical signals.

Guillain-Barré syndrome is a treatable disease. Medical support is aimed at managing your symptoms and preventing complications.

If you have severe symptoms, including weak chest muscles and are unable to swallow, you may need to be put on a breathing machine (ventilator) or be fed through a tube.

You may be treated in hospital where you will be carefully monitored, especially your breathing, heart rate and blood pressure. If you are very unwell, you may be treated with:

• antibodies that are added to your blood intravenously through a vein (intravenous immune globulins)
• plasma exchange, where blood is taken from your body, the harmful antibodies are removed, and the blood is returned to your body.

These treatments have been found to shorten the length of the illness.

Guillain-Barré syndrome usually gets better slowly on its own, over time, as the nerves repair themselves.

You may see different healthcare providers during your hospital stay and during your rehabilitation:

• dietitians
• occupational therapists
• pharmacists
• physiotherapists
• social workers
• speech-language therapists.

Most people with Guillain-Barré syndrome make a full recovery in 6 to 12 months, but you may be in hospital for a few months.

It is important to manage tiredness (fatigue) and conserve energy during your recovery. Doing too much too soon can delay your recovery. Prioritise good sleep and regular rest, as these are essential parts of your recovery.

Conserving energy

Self care for good sleep

Ask for support from your healthcare team and from friends and whānau. There are also support groups where you can connect with other people who have had Guillain-Barré syndrome.

Eating well is essential to support your recovery. You may be able to get specific guidance from a dietitian.

Eating well for good health

One or 2 people in every 10 people with Guillain-Barré syndrome will have some level of permanent impairment, such as:

• weakness
• muscle wasting (loss of muscle mass)
• difficulty walking
• pain.

Guillain-Barré syndrome can be fatal, and this is often due to complications such as problems breathing, lung infection (pneumonia), heart attack or infection.