Four months ago, I had never heard of this disease. Now I understand it all too well, as my mother is suffering from it. According to the National Institute of Neurological Disorders and Stroke (NINDS), Guillain-Barré syndrome (pronounced GEE YAN BAH RAY) “is a disorder in which the body's immune system attacks part of the peripheral nervous system.”
This disease afflicts just one in every 100,000 people and is most common between the ages of 30 and 50. However, NINDS says it can strike any age or either sex. My mother is 74.
Contracting GBS
In some cases, NINDS notes, the onset of GBS is preceded by a virus or bacterial infection. This is how my mother contracted the disease. At first, she thought she had food poisoning, then as the symptoms lingered, she assumed it was a virus or stomach bug.
One day, after the so-called stomach bug had worn off, my mother fell going up stairs and she thought her knee had given out. She waited a few days to see if it would heal on its own. She then started to feel lower back pain, so she went to a chiropractor. The first visit worked wonders, but the second and third, not so much, so she stopped. Within a few days, she became so weak she could hardly stand.
Another way that people can contract GBS, NINDS reports, is through vaccinations. The law firm Maglio Christopher Toale, which represents medical class action lawsuits, notes on its website that in the absence of other known causes, “Guillain-Barré Syndrome manifesting within the month following administration of the flu vaccine (and some other vaccines), was triggered by the vaccination.”
Medline Plus reports that Guillain-Barré also can be associated with other debilitating diseases such as lupus, Hodgkins’ disease, AIDS, herpes and mononucleosis.
Diagnosing GBS
Diagnosing Guillain-Barré Syndrome is not easy. My mother was misdiagnosed twice, first as having a salt deficiency. The doctor told her to increase her salt intake and sent her home from the hospital after 24 hours. Just a month later, a different doctor told her she could possibly have amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, for which the symptoms are similar but the outcome completely different, since ALS is fatal.
That’s a huge jump – from you’re low on salt to you’re going to die. In fact, doctors tested my mother for more than eight diseases, including Lyme disease and swine flu. NINDS says several disorders have symptoms similar to those found in Guillain-Barré, so doctors examine and question patients carefully before making a diagnosis. In fact, my mother’s doctor refused to give her a diagnosis for the first three months.
There are numerous blood and muscle biopsy tests that can be done, in particular one called an electromyography (EMG), which determines muscle activity. But even some test results can lead to more than one disease. In my mother’s case, the doctor ruled out other diseases that blood tests could definitively determine, and then, simply by the fact that she wasn’t getting any worse, determined she did not have ALS, so therefore it had to be GBS. In other words, if she continued to deteriorate slowly, then it was more likely she had ALS. If she did not, it was more likely she had GBS.
Treatment for GBS
NINDS and other experts say there is no known cure for Guillain-Barré syndrome. Therapies are used to lessen the severity of the illness and build the muscles back up during the recovery phase.
If caught and diagnosed early, the recommended treatment is plasmapharesis, in which the blood is removed from the body and passed through a machine that separates blood cells. The separated cells are then returned to the body with new plasma. This helps shorten the course and severity GBS.
Beyond that, extensive physical therapy is needed to build the muscles back to normal.
Recovery from GBS
Recovery can take weeks, months or years. Most people survive and recover completely, according to NINDS, although some patients still have some weakness after three years.
Andy Griffith, the actor most known for his roles on The Andy Griffith Show and Matlock, suffered from Guillain-Barré in 1983. Through extensive physical therapy, he regained his ability to walk after seven months, which enabled him to play the lead role of Ben Matlock.
My mother is in month four of her disease with just two months of physical therapy and shows no signs of being able to walk yet. It’s going to be a long haul, but if the statistics are right, she will be back on her feet someday. A year from now, my niece is getting married. My mother not only plans to walk into the reception, she plans to dance. Go, Mom.
Resources:
National Institute of Neurological Disorders and Stroke
Lynn Russo Whylly - I am a professional business writer and editor with experience covering a wide variety of business issues, including marketing, ...
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