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Guillain-Barre Syndrome - a.k.a Acute Idiopathic Peripheral Autonomic Pandysonnomnia

Upper respiratory infections are faithy common. A person can, however, have just the right genetics to cause these infections to start attacking nerves. Guillain-Barre syndrome does just this: It diverts the immune system's disease-curing agents to attack the nerves in a person's arms and legs that control blood vessels. Consequently, it can take someone with this syndrome a bit longer to gain equilibrium when he or she stands up than most people.

Some strains of this disorder return each year or so, at which time the affected with be homebound for a week or two. During an attack, blood pressure will be dangerously high when lying down and dangerously low when standing. This will leave the individual without the ability to walk normally or safely drive a car. Total recovery from an episode generally takes between 3 and 6 months.

In order to verify that one has this disorder, neurologists generally do nerve conduction velocity tests, about 2 dozen blood/urine tests, and a spinal tap. Since there are no known causes, there are few known treatments. Plasmapheresis and migraine medications have shown benefits, but they only treat the symptoms.


Definition:

"Guillain-Barre Syndrome (acute idiopathic polyneuritis) is a very rare, rapidly progressive disorder causing inflammation of the nerves (polyneuritis) and paralysis. Although the precise cause of Guillain-Barre Syndrome is unknown, a viral or respiratory infection precedes the onset of the syndrome in about half of the cases. This has led to the theory that Guillain-Barre Syndrome may be an autoimmune disorder (caused by the body's own immune system) Damage to the covering of the nerve cells (myelin) and nerve axons (the extension of the nerve cell that conducts impulses away from the nerve cell body) results in delayed nerve signal transmission. There is a corresponding weakness in the muscels that are supplied with nerve impulses (innervate) by the affected nerves"
--Courtesy of the National Organization for Rare Disorders, Inc.

All the names for this disorder:

Subdivisions of this disorder:


For more information, contact:


Guillain-Barre Syndrome Foundation International
P.O. Box 262
Wynnewood, PA 19096
Phone: (610) 667-0131
email: gbint@ix.netcom.com
Homepage: http://www.webmast.com/gbs/

National Institute of Neurological Disorders and Stroke
31 Center Dr MSC 2540
Building 31 Rm 8806
Bethesda, MD 20892
Phone: (301)496-5751
Toll-Free: (800)352-9424
Homepage: http://www.ninds.nih.gov/
Acute inflammatory demyelinating polyneuropathy is also known as Landry’s ascending paralysis but is most commonly referred to as Guillain-Barre (Ghee-yun Bah-ray) Syndrome, GBS. GBS is a disorder than inflames the peripheral nerves, the ones not in the brain or spinal cord.

”I was waiting in line to get the flu vaccine at Lackland. It was, as always, a shitty time. So, they stick me with the needle and I feel normal, ya know? A bunch of guys are fainting because of the needles, some people go into minor convulsions. I guess that was normal.”

The characteristic symptoms of GBS are paralysis in the arms, legs, face and breathing muscles. It typically begins with weakness and/or abnormal sensations in the arms and legs. The term “abnormal sensations,” in many cases, means agonizing pain. Muscles in the eyes, face and chest can also be affected. Though many cases are mild, some patients are virtually paralyzed. Sometimes muscles in the chest are so weakened that many patients need a machine to breathe for them.

The onset of the disease is rapid, pain and paralysis affecting both sides of the body similarly. The symptoms are usually quite sufficient to indicate a diagnosis. To confirm the diagnosis, a lumbar puncture is usually done to test for elevated fluid protein.

”I started to complain of odd pains and numbness. The Group physician explained that pain was okay, in this case, he wasn’t concerned about that. It was the numbness. After about a day I was unable to move my fingers or toes and was hospitalized. My mom was out in Texas in two days and after a week I couldn’t move my arms or legs. I had a really fucking terrible time moving my eyes and they shook like I was on ecstasy. It wasn’t until after about three weeks that it got really bad.

“My body began to fade into feeling again, but it wasn’t like anything I had known. Pain wracked my body, beneath me my back screamed from holding my weight. When they would pull the thin sheets off of me if was like they were stripping my flesh from my muscles. The breeze from the open window caused my face to burn. It was unbelievable. I could not complain because I could not move.

“And then the pain stopped and I faded. I became comfortably numb. I felt my lungs slow down, I understood that breathing would be my job now. I struggled with the rhythm at first, feeling ridiculous fear whenever it fell away. Sleep was strange because it came, even though I continued to consciously control my breathing. Images would fade in and out of people and places and I knew a new sort of sympathy. I understood what it was like to be trapped financially, I understood what the kids at school that I made fun of felt like. I knew what it was like to be trapped in your own body, in your own life.”

Although most people make a full recovery, some must be in an intensive care unit for months. Some must fight the disease indefinitely, alternately confined to wheelchairs and hospital beds. It is terribly difficult to treat because the disease in its early stages is very unpredictable. Newly diagnosed patients are hospitalized immediately and placed in an ICU to monitor breathing and other body functions.

The only real active means to treat the disease is a plasma exchange and high dose intravenous blood globulins. Once the patient is medically stable and the nervous system begins to function properly again

”When they had me begin to walk again it was difficult. In addition to recovery being difficult, I had to deal with all the rigg-a-maroll of doctors being a higher rank than me. It was another two weeks before I could begin training again, so I had been at Lackland for four months without ever even learning the Air Force Song.

“It wasn’t a good time at all. . . even a little bit. But I learned a lot, for whatever that’s worth.”

No one is really sure what causes Guillain-Barre but perhaps 50% of cases happen after some type of microbial infection, and many people suspect that modern influenza vaccinations are the cause. The only real thing we know about the cause is that something convinces the body’s immune system to go a bit crazy and begin attacking the myelin sheathes that protect the nervous system, sending chemical and electrical information in patterns in a disordered and painful manner.

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