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We would like this web page to be an informative and helpful site for Guillain-Barre Syndrome sufferers, their friends and family.
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Overview
GBS is short for "GUILLAIN-BARRE SYNDROME" (pronounced Ghee-Yan-Barray), also called acute idiopathic polyneuritis and Landry's ascending paralysis. It is an inflammatory disorder of the peripheral nerves, those outside the brain and spinal cord. The syndrome occurs sporadically. It can't be predicted, and can occur at any age and in either sex. It can vary greatly in severity from the mildest case, that may not even be brought to a doctor's attention, to a devastating illness with almost complete paralysis that brings a patient close to death. Because it is so rare, most of the public has never heard of the illness, or if they have, know little about it. Yet for those affected, the illness can be severely frightening and disabling.
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Causes
The causes of Guillain-Barre Syndrome are not known. A variety of events seem to trigger the illness. Many cases occur a few days to a few weeks after a viral infection. These infections include the common cold, sore throat and stomach and intestinal illnesses with diarrhea. Vaccinations may also precipitate its onset.
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Symptoms
The common initial symptoms are numbness and tingling in the lower limbs or even weakness, accompanied by abnormal sensations that affect both sides of the body. Weakness ascends through the body affecting the muscles. Back pain affects around 30%. Facial muscles and breathing can also be affected.
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Diagnosis
The patient's symptoms and physical exam are usually sufficient to indicate the diagnosis. The rapid onset of (ascending) weakness, frequently accompanied by abnormal sensations that affect both sides of the body similarly. Loss of reflexes, such as a knee jerk, are usually found. To confirm the diagnosis, a lumbar puncture to find elevated fluid protein and electrical tests of nerve and muscle function may be performed.
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Treatment
Progression of the illness in the early stages are quite unpredictable, so newly diagnosed patients are hospitalized, sometimes into an intensive care unit to monitor breathing and other body functions. Care involves use of general supportive measures for the paralyzed patient, and also methods specifically designed to speed recovery, especially for those with major problems, such as an inability to walk. Plasma exchange may be used (a blood "cleansing" procedure called Plasmapheresis) or high dose immune globulins (usually given over a five day period) are often helpful to shorten the course of GBS.
Should abnormalities of the internal organs develop, a variety of treatments are available. Bedside measurements of 'breathing capacity' may be performed, daily or even hourly. If there is sufficient weakness of breathing muscles, mechanical ventilation may be initiated. Both high and low blood pressure as well as unusually slow or rapid heart beats can occur, and blood flow tends to be slow in the leg and pelvic veins or paralyzed patients. Blood thinners could be used or special elastic stockings may be provided to prevent clot formations.
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Emotions
During the early part of the illness, especially for those who require artificial respiration, events can be quite frightening. Most patients were previously fit and healthy, so finding themselves suddenly paralyzed, in pain and quite helpless can be emotionally upsetting. Patients that are ventilated may not be able to communicate verbally, but can hear and understand what is going on around them, this can be quite frustrating. The feeling of utter helplessness, hopelessness, thoughts of possible death, thought of permanent disability and even loss of earnings can be emotionally overwhelming. It is helpful to both patient and family to understand that their is a relatively good chance of recovery. Explanations of care and activities help alleviate anxiety as well as visits by family and friends who will show caring and provide moral support. The patient on a respirator may feel less frustrated if a method for communicating
with others is provided.
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Rehabilitation
During even the earliest part of the acute care
hospital stay the rehabilative process may be initiated. A physical
therapist may perform passive range of motion exercises by moving the arms and
legs. A foot board or other device may be used to prevent foot drop.
Regular turning of a paralyzed patient is essential to prevent bedsores or
decutiti. Pain of joints and muscles can be treated with pain medications, but
the patient will often feel unusual sensations of their skin and throughout
their body as damaged sensory nerves undergo healing generating abnormal
signals.
When the patient has recovered from
medical complications, such as breathing difficulty and infections, and some
muscle strength has returned, treatment in an acute care hospital is usually no
longer required. However, most patients will still require some continued
rehabilitation care, especially physical and occupational therapy.
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Prognosis
Patients recovery time may vary considerably, but although usually a slow
healing process, the overall outlook is relatively optimistic. Up to 90%
of patients reach nearly complete recovery. A small percentage of patients
have mild abnormalities that will not interfere with long term function.
Others may have more severe, long-term disabilities that prevent them from
returning to their prior lifestyle. Relapses are not common but do occur
in a small number of patients, but the symptoms are often milder.
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Support
Support from family and friends during the onset and during rehabilitation is
very important for the recovering GBS patient. Help in other fields are
also available such as Guillain-Barre Syndrome Support Groups and other health
care facilitators and organisations. See below for support groups and
medical equipment available.
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Support Services
Services available from the South East Queensland Group include:
- Visits to patients by recovered persons
- Information booklet
- Half-yearly newsletter
- Medical accessory information
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Similar Disorders
There are
several disorders that can affect the nervous system or muscles and cause
symptoms similar to Guillain-Barre syndrome. These include Lyme disease,
poisoning with heavy metals, porphria, post-polio syndrome some malignancies as
well as diabetics. There are also other variations of GBS including CIDP
(Chronic Inflammatory Demyelinating Polyneuropathy) and Miller Fisher Syndrome
(acute Disseminated Encephalomyeloradiculopathy).
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Contacts
QLD
For more information in the Brisbane area of Queensland contact:
NSW
For more information in the New England/Hunter Valley area of New South Wales contact:
For more information in the Central Coast area of New South Wales contact:
- Wayne and Allison Falconer of Gosford.
Telephone (043) 928-285 Mobile 0418-961-890.
VIC
For more information in Victoria contact:
- James H. Gerrand, Director of the IN Group, 138B Princess Street Kew, Victoria.
Telephone (03) 9853-6443. Email ingroup@vicnet.net.au.
SA
For more information in South Australia contact:
- Neurological Resource Centre at 23A King William Road, Unley SA 5061.
TAS
For more information in Tasmania contact:
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