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Healthy one day, ravaged another, now back on track

A working single parent is determined to stay healthy after contracting a neuromuscular disease that can recur at any time.

© St. Petersburg Times,
published November 21, 2001

ST. PETERSBURG -- It seemed like the flu. High fever, chills, headache, muscle aches.

As the symptoms continued, doctors ruled out influenza and told Tracy Copp she had a sinus infection.

After 10 days of medication did not improve her condition, the 22-year-old went back to the hospital to get another opinion about what was wrong with her body. This time, she was told her brain was swelling.

So Copp took some anti-inflammatory medicine, but her headache didn't disappear, her fever clung, and she wasn't eating. And she noticed something she had never felt before.

"I woke up and all of a sudden my hands and feet were numb," she said. "The numbness felt like I was wearing thick gloves. You feel funny up and down your arms."

She couldn't afford to get sick. With a 3-year-old son and a full-time job as an analyst for a human resources company, Copp said she had no choice but get better.

She went to the emergency room at St. Anthony's Hospital, where doctors referred her to Dr. Allan Weiss, a neurologist.

Weiss suspected a rare disease of the immune system, called Guillain-Barre. He sent Copp back to the emergency room and, after blood tests, a spinal tap and electric shock tests to gauge muscle and nerve functions, made his final diagnosis.

The news was not pleasant.

Copp did indeed have Guillain-Barre syndrome, a neuromuscular disease that affects one of every 100,000 people. The origin as well as the cure are unknown. The disease doesn't kill, but it can plague patients their whole lives.

"I would sit there crying," Copp said. "I was so frustrated."

The disease, with symptoms first identified in 1856, attacks all nerves outside those in the brain and spinal cord and can paralyze the arms, legs, lungs and neck. It is named after Georges Guillain and Jean Alexander Barre, the doctors who in 1916 recorded the disease's tendency to increase the amount of protein in spinal fluid without increasing the number of cells. The most common treatment: draining and cleansing a patient's blood.

People like Copp first feel a tingling or numbness in their fingers or toes that later takes over the whole body. About half of those who are diagnosed with Guillain-Barre, which can attack people of any age, gender or race, develop the disease after a bacterial infection or a flulike illness.

The key is identifying Guillain-Barre and treating it before it paralyzes the lungs and stops the ability to breathe, Weiss said.

This is where Copp got lucky. Within 30 minutes of being diagnosed with the disease, Copp was admitted into the intensive care unit at St. Anthony's. She was hooked up to numerous tubes, including one in her jugular vein, and, in two hours, Florida Blood Services arrived to begin a procedure called plasmapheresis, or plasma exchange.

The blood-cleansing treatment is done by a machine, which removes blood, spins it at a high speed to separate the components, takes out the plasma and replaces it with a protein solution, and returns the newly filtered blood back to the patient, said German Leparc, the doctor who performed the treatment.

The plasma that is taken from the blood contains the antibodies that attack the patient's body.

Patients treated with plasmapheresis recover from Guillain-Barre more quickly than others, Leparc said. Copp was given the plasma exchange treatment five times, once every other day for 11 days -- time she had to spend away from her son, Nash, and her job. She didn't like the tubes, the prodding and the sight of the blood, she said.

"Thank God I had so many friends visiting," she said. "And the doctors and nurses and Florida Blood Services were so informative to me that they kept my mind straight."

At the end of the 11 days, on Oct. 31, Copp was released. "The day I got to go outside was the most beautiful thing," she said.

Although Copp is feeling much better, full recovery could be a long process.

"Without the treatment, Tracy would have gotten worse," Weiss said. "Her disease evolved not as fast as I've seen, but not as slow as I've seen either. What plasma exchange does is it hastens the recovery, but she could relapse."

Copp said she is doing as much as possible to keep herself well.

One week after being released from St. Anthony's, Copp sat on a couch in the living room of her St. Petersburg home and watched as a rambunctious Nash ignored the cartoon on television and showed off his miniature dinosaurs.

"I'm a single mom and he's had a lot of changes in his life," she said. "I've made it stable for him, and there is no way I would change that."

The next step is physical therapy and keeping herself healthy with vitamins and good nutrition, she said.

Weiss, who has seen dozens of Guillain-Barre patients throughout his medical education and in his more than eight years of practice, said the disease is so unpredictable and can attack with such varied levels of seriousness that Copp's prognosis is not known.

The unpredictability of the disease is precisely the worst part, said Estelle Benson, co-founder of the Guillain-Barre Syndrome Foundation International.

Benson and her husband, who has Guillain-Barre, said that of the 23,000 patients in the organization, some of them doctors who developed the disease, everyone has a different story.

"The body plays a terrific trick on itself," she said. "Everybody has their own timeline. There is no guarantee of complete recovery and no guarantee of the length of time."

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