What Is Guillain-Barre Syndrome?
A comprehensive overview
of the autoimmune disease Guillain-Barre syndrome from the National
Institute of Neurological Disorders and Stroke.
Guillain-Barre (ghee-yan
bah-ray) syndrome is a disorder in which the body's immune system attacks
part of the peripheral nervous system. The first symptoms of this disorder
include varying degrees of weakness or tingling sensations in the legs. In
many instances the weakness and abnormal sensations spread to the arms and
upper body. These symptoms can increase in intensity until the muscles
cannot be used at all and the patient is almost totally paralyzed. In these
cases the disorder is life threatening -- potentially interfering with
breathing and, at times, with blood pressure or heart rate -- and is
considered a medical emergency. The patient is often put on a respirator to
assist with breathing and is watched closely for problems such as an
abnormal heart beat, infections, blood clots, and high or low blood
pressure. Most patients, however, recover from even the most severe cases of
Guillain-Barre syndrome, although some continue to have some degree of
weakness.
Guillain-Barre syndrome
can affect anybody. It can strike at any age and both sexes are equally
prone to the disorder. The syndrome is rare, however, afflicting only about
one person in 100,000. Usually Guillain-Barre occurs a few days or weeks
after the patient has had symptoms of a respiratory or gastrointestinal
viral infection (such as Food Poisoning as in my case). Occasionally surgery
or vaccinations will trigger the syndrome. The disorder can develop over the
course of hours or days, or it may take up to 3 to 4 weeks. Most people
reach the stage of greatest weakness within the first 2 weeks after symptoms
appear, and by the third week of the illness 90 percent of all patients are
at their weakest.
In my case, I was 95%
paralyzed from neck down and due to muscle loss and nerve damage I was
unable to even stand by self for nearly 2 years!
What causes Guillain-Barre
syndrome?
No one yet knows why
Guillain-Barre strikes some people and not others. Nor does anyone know
exactly what sets the disease in motion.
What scientists do know is
that the body's immune system begins to attack the body itself, causing what
is known as an autoimmune disease. Usually the cells of the immune system
attack only foreign material and invading organisms. In Guillain-Barre
syndrome, however, the immune system starts to destroy the myelin sheath
that surrounds the axons of many peripheral nerves, or even the axons
themselves (axons are long, thin extensions of the nerve cells; they carry
nerve signals). The myelin sheath surrounding the axon speeds up the
transmission of nerve signals and allows the transmission of signals over
long distances.
In diseases in which the
peripheral nerves' myelin sheaths are injured or degraded, the nerves cannot
transmit signals efficiently. That is why the muscles begin to lose their
ability to respond to the brain's commands, commands that must be carried
through the nerve network. The brain also receives fewer sensory signals
from the rest of the body, resulting in an inability to feel textures, heat,
pain, and other sensations. Alternately, the brain may receive inappropriate
signals that result in tingling, "crawling-skin," or painful sensations.
Because the signals to and from the arms and legs must travel the longest
distances they are most vulnerable to interruption. Therefore, muscle
weakness and tingling sensations usually first appear in the hands and feet
and progress upwards.
When Guillain-Barre is
preceded by a viral infection, it is possible that the virus has changed the
nature of cells in the nervous system so that the immune system treats them
as foreign cells. It is also possible that the virus makes the immune system
itself less discriminating about what cells it recognizes as its own,
allowing some of the immune cells, such as certain kinds of lymphocytes, to
attack the myelin. Scientists are investigating these and other
possibilities to find why the immune system goes awry in Guillain-Barre
syndrome and other autoimmune diseases. The cause and course of
Guillain-Barre syndrome is an active area of neurological investigation,
incorporating the cooperative efforts of neurological scientists,
immunologists, and virologists.
How is Guillain-Barre
syndrome diagnosed?
Guillain-Barre is called a
syndrome rather than a disease because it is not clear that a specific
disease-causing agent is involved. A syndrome is a medical condition
characterized by a collection of symptoms (what the patient feels) and signs
(what a doctor can observe or measure). The signs and symptoms of the
syndrome can be quite varied, so doctors may, on rare occasions, find it
difficult to diagnose Guillain-Barre in its earliest stages.
Several disorders have
symptoms similar to those found in Guillain-Barre, so doctors examine and
question patients carefully before making a diagnosis. Collectively, the
signs and symptoms form a certain pattern that helps doctors differentiate
Guillain-Barre from other disorders. For example, physicians will note
whether the symptoms appear on both sides of the body (most common in
Guillain-Barre ) and the quickness with which the symptoms appear (in other
disorders, muscle weakness may progress over months rather than days or
weeks). In Guillain-Barre, reflexes such as knee jerks are usually lost.
Because the signals traveling along the nerve are slower, a nerve conduction
velocity (NCV) test can give a doctor clues to aid the diagnosis. In
Guillain-Barre patients, the cerebrospinal fluid that bathes the spinal cord
and brain contains more protein than usual. Therefore a physician may decide
to perform a spinal tap, a procedure in which the doctor inserts a needle
into the patient's lower back to draw cerebrospinal fluid from the spinal
column.
How is Guillain-Barre
treated?
There is no known cure for
Guillain-Barre syndrome. However, there are therapies that lessen the
severity of the illness and accelerate the recovery in most patients. There
are also a number of ways to treat the complications of the disease.
Currently, plasmapheresis and
high-dose immunoglobulin therapy are used. Both of them are equally
effective, but immunoglobulin is easier to administer. Plasmapheresis is a
method by which whole blood is removed from the body and processed so that
the red and white blood cells are separated from the plasma, or liquid
portion of the blood. The blood cells are then returned to the patient
without the plasma, which the body quickly replaces. Scientists still don't
know exactly why plasmapheresis works, but the technique seems to reduce the
severity and duration of the Guillain-Barre episode. This may be because the
plasma portion of the blood contains elements of the immune system that may
be toxic to the myelin.
In high-dose immunoglobulin
therapy, doctors give intravenous injections of the proteins that, in small
quantities, the immune system uses naturally to attack invading organisms.
Investigators have found that giving high doses of these immunoglobulins,
derived from a pool of thousands of normal donors, to Guillain-Barre
patients can lessen the immune attack on the nervous system. Investigators
don't know why or how this works, although several hypotheses have been
proposed.
The use of steroid hormones
has also been tried as a way to reduce the severity of Guillain-Barre, but
controlled clinical trials have demonstrated that this treatment not only is
not effective but may even have a deleterious effect on the disease.
The most critical part of the
treatment for this syndrome consists of keeping the patient's body
functioning during recovery of the nervous system. This can sometimes
require placing the patient on a respirator, a heart monitor, or other
machines that assist body function. The need for this sophisticated
machinery is one reason why Guillain-Barre syndrome patients are usually
treated in hospitals, often in an intensive care ward. In the hospital,
doctors can also look for and treat the many problems that can afflict any
paralyzed patient -- complications such as pneumonia or bed sores.
Often, even before recovery
begins, caregivers may be instructed to manually move the patient's limbs to
help keep the muscles flexible and strong. Later, as the patient begins to
recover limb control, physical therapy begins. Carefully planned clinical
trials of new and experimental therapies are the key to improving the
treatment of patients with Guillain-Barre syndrome. Such clinical trials
begin with the research of basic and clinical scientists who, working with
clinicians, identify new approaches to treating patients with the disease.
What is the long-term
outlook for those with Guillain-Barre syndrome?
Guillain-Barre syndrome can
be a devastating disorder because of its sudden and unexpected onset. In
addition, recovery is not necessarily quick. As noted above, patients
usually reach the point of greatest weakness or paralysis days or weeks
after the first symptoms occur. Symptoms then stabilize at this level for a
period of days, weeks, or, sometimes, months. The recovery period may be as
little as a few weeks or as long as a few years. About 30 percent of those
with Guillain-Barre still have a residual weakness after 3 years. About 3
percent may suffer a relapse of muscle weakness and tingling sensations many
years after the initial attack.
Guillain-Barre syndrome
patients face not only physical difficulties, but emotionally painful
periods as well. It is often extremely difficult for patients to adjust to
sudden paralysis and dependence on others for help with routine daily
activities. Patients sometimes need psychological counseling to help them
adapt.
What research is being
done?
Scientists are concentrating
on finding new treatments and refining existing ones. Scientists are also
looking at the workings of the immune system to find which cells are
responsible for beginning and carrying out the attack on the nervous system.
The fact that so many cases of Guillain-Barre begin after a viral infection
suggests that certain characteristics of these viruses may activate the
immune system inappropriately. Investigators are searching for those
characteristics. As noted previously, neurological scientists,
immunologists, virologists, and pharmacologists are all working
collaboratively to learn how to prevent this disorder and to make better
therapies available when it strikes.
Where can I go for more
information?
The National Institute of
Neurological Disorders and Stroke conducts and supports a wide range of
research on neurological disorders, including Guillain-Barre syndrome. The
organization listed below provides printed information and assistance to
Guillain-Barre patients and other interested parties.
Guillain-Barre
Syndrome Foundation International
P.O. Box 262
Wynnewood, PA 19096
610-667-0131
"The National Institute of
Neurological Disorders and Stroke of The National Institutes of Health.
Guillain-Barre Syndrome. NIH Publication No. 98-2902. November 1997. Last
revised August 31, 1999. (Online)
Other Changes To Make
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drink 6-8 glasses of steam distilled or
filtered water a day
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eat 50% raw fruits and vegetables (organic is best)
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nuts, seeds, and whole grains are good
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juice is good (make your
own with a juice machine)
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do not worry as much about calories as eating the right foods
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carrot and celery sticks are good to use as a snack
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a colon cleansing can be very helpful - (do several times each year)
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do not drink coffee, alcohol, soda pop, other junk food drinks
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do not eat processed foods white sugar, white flour, etc...
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use stress relief like going for walks in the park
(or the 10/90 rule - see
Stress)
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brown rice is good to eat
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avoid red meat and animal fats
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reduce dairy products cheese, milk, and others
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fast a few days a month
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get at least 8 hours of sleep
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exercise light to moderate amounts
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avoid artificial sweeteners like Aspartame and NutraSweet
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do not smoke and avoid second hand smoke
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do not skip meals - just eat better and not as much at each meal
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do not chew gum - it can cause you to feel hungry
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do not watch too much TV try reading a book or something else
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