What is Guillain-Barré Syndrome?
Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.
It’s also called:
- Acute Inflammatory Demyelinating Polyneuropathy
- Landry’s Ascending Paralysis
GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. Loss of reflexes, such as the knee jerk, are usually found.
What causes GBS?
The cause is unknown. We do know that about 50% of cases occur shortly after a microbial infection (viral or bacterial), some as simple and common as the flu or food poisoning. Some theories suggest an autoimmune trigger, in which the patient’s defense system of antibodies and white blood cells are called into action against the body, damaging myelin (nerve covering or insulation), leading to numbness and weakness.
How is GBS diagnosed?
To confirm a diagnosis, two tests may be performed:
- A lumbar puncture looking for elevated fluid protein
- Electrical test of nerve and muscle function
How is GBS treated?
GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized. Plasma exchange (a blood “cleansing” procedure) and high dose intravenous immune globulins are often helpful to shorten the course of GBS.The acute phase of GBS typically varies in length from a few days to months, with over 90% of patients moving into the rehabilitative phase within four weeks. Patient care involves the coordinated efforts of a team such as a neurologist, physiatrist (rehabilitation physician), internist, family physician, physical therapist, occupational therapist, social worker, nurse, and psychologist or psychiatrist. Some patients require speech therapy if speech muscles have been affected.
There are many variants of GBS, but they all share the characteristic of being ‘rapid onset’:
- Acute Inflammatory Demyelinating Polyneuropathy (AIDP) 75% – 80% of cases fall into this ‘classic’ category
- Acute Motor Axonal Neuropathy (AMAN) Similar to AIDP, but without sensory symptoms
- Acute Motor Sensory Axonal Neuropathy (AMSAN) Severe variant of GBS more prevalent in Asia, Central America, and South America
- Miller Fisher Syndrome Characterized by double vision, loss of balance, and deep tendon reflexes
Living with GBS
Recovery may occur over six months to two years or longer. A particularly frustrating consequence of GBS is long-term recurrences of fatigue and/or exhaustion as well as abnormal sensations including pain and muscle aches. These can be aggravated by ‘normal’ activity and can be alleviated by pacing activity and rest.
Caring for Someone with GBS
What you can do:
- Get support for yourself. It’s important that your help comes from a healthy physical and emotional place. This is not an easy journey for either of you. Asking for and accepting help is one of the most difficult (and important) things a caregiver can do before reaching burnout. Don’t let it reach that point if you can. Many hospitals have social workers on staff to help.
- Take care of yourself. There is a good reason that airlines ask caregivers to put their oxygen masks on first in case of an emergency. Make sure you are eating well and getting enough sleep. Your self-care will fuel you to be available for the patient.
- Become familiar with GBS. Knowledge is power. Though debilitating, this is a disease that has specific stages. It’s very helpful to know that the acute phase, however frightening, is temporary. Ask a lot of questions. The patient will be assured that you know what is going on with the disease as well as treatment and can act as an advocate.
- Contact your local GBS/CIDP chapter. One of the most powerful things you can provide for the patient is a visit from a survivor. Speaking with another human being who has experienced the pain and the paralysis, yet walks into a hospital room with a smile is extremely reassuring.
- Be with the patient as much as possible. Losing control of oneself is a frightening experience, and a steady source of encouragement and support is very helpful for the patient. Bring your outside life in—work on a project of any kind in the hospital—knit, write, organize photos, pay bills, read out loud, blog, or bring in news and well wishes from other friends/relatives.
- Find a way to communicate. If the patient is on a ventilator, speaking is impossible. Not being able to communicate needs is frustrating. The Foundation has a set of “communication cards” designed by a GBS patient/doctor (contact the Foundation to order the cards). Other options may be available in the hospital.
- Listen. This situation is new and frightening to the patient. All feelings are okay. Anger, fear, and depression are all normal reactions to a sudden, debilitating disease.
- Bring ‘home’ to the hospital. Photos of loved ones or a favorite painting can provide a sense of belonging. Watching movies and listening to favorite music or books on tape can provide a welcome respite from the realities of living through the acute phase of GBS.