Matt LaRocco was driving from a client meeting in Philadelphia to his home in the District of Columbia when his feet started to tingle as if they were falling asleep. The next day, the lobbyist and new dad awoke to an “incredible” pain in his right shoulder and left thigh. A few doctor visits and days later, he collapsed while walking to the car. He was just thankful he hadn’t been holding his 9-month-old daughter at the time in late 2011.
“I lost all feelings in my legs and I just fell,” recalls LaRocco, 46, who was diagnosed with Guillain-Barre syndrome, a disorder in which the immune system attacks parts of the peripheral nervous system, which can cause muscle weakness, pain, balance issues and even paralysis, albeit typically temporarily. “It can be mild,” says Dr. Ken Gorson, a professor of neurology at Tufts University School of Medicine and president of GBS-CIDP Foundation International’s Global Medical Advisory Board, “or, for the more severe cases, it can be a devastating, life-altering disease.”
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For LaRocco, the numbness, which landed him in the intensive care unit for 28 days, crawled up his body, paralyzing him from the neck down. He couldn’t breathe, but survived on a respirator. He couldn’t talk, but established a system of blinking and using other signals to communicate. He couldn’t feel his wife’s or daughter’s hands on his, but he could feel the deep pain caused by nerves whose protective coating, or myelin, had been damaged. “You can’t feel your fingers,” he says, “but you’ve got this deep pain just running through. Thanks to a cocktail of powerful painkillers, the rest of LaRocco’s experience in the ICU is hazy. “I’m glad that honestly I don’t remember a lot of it,” he says.
“Their Lives Are Completely Rocked”
Guillain-Barre Syndrome, or GBS, affects about 1 in 100,000 people, according to the National Institute of Neurological Disorders and Stroke. The condition’s rarity plays out in two common ways: Clinicians frequently misdiagnose it as something more common like Lyme disease (LaRocco’s original diagnosis), and patients have not typically heard of it until they are diagnosed. “Their lives are completely rocked by this,” says Gorson, noting that in about two-thirds of cases, the condition, which is not itself contagious, seems to be triggered by an infectious agent — say, a respiratory virus, an infectious diarrheal illness or likely even Zika — even though symptoms of the offending virus tend to subside weeks earlier.
GBS may also be triggered by a vaccine, although clinicians and even patients like LaRocco, who was told the flu vaccine spurred his GBS, contend that the flu vaccine’s benefits — like preventing hospitalization and even death among both vaccine recipients and people around them — outweigh the slight risk. “There’s nothing people can do to prevent acquiring Guillain-Barre syndrome,” which is typically diagnosed through an evaluation of symptoms, blood tests and a spinal tap, Gorson says.
[See: 10 Cold and Flu Myths Debunked.]
While scientists are still working to find out why some people are more susceptible to GBS than others, they do know more about how the disease’s autoimmune reaction progresses than in the past, says Brian Popko, a professor of neurological disorders at the University of Chicago, where he directs the Center for Peripheral Neuropathy. In some cases, they’ve found, the immune system rightly generates antibodies to fight a virus, but those antibodies wrongly attack some peripheral nerves’ myelin sheath, or the protective coating that helps nerves communicate. In other cases, these antibodies destroy the nerve axon, which carries nerve signals, underneath. And in some cases, they affect both.
“Encouragingly, both … have a natural capacity for repair,” Popko says, “which explains why most patients recover even from the most severe forms of GBS.”
Life After GBS
Once LaRocco received the correct diagnosis, doctors tried to treat him with intravenous immunoglobulin, or IVIG, a standard therapy that involves infusing healthy antibodies into the patient in order to sort of neutralize the antibodies that are attacking the nerves. But LaRocco didn’t respond to the treatment, so doctors tried plasmapheresis, a plasma exchange therapy similar to dialysis. Eventually, it began to work. “These treatments don’t grow the nerves back,” Gorson explains. “What they do is they hasten the recovery that would otherwise normally occur.”
A hastened recovery is still a slow one, as LaRocco’s experience demonstrates. He spent six weeks learning how to sit up and otherwise regain some muscle function in an inpatient rehabilitation center and another six weeks as a rehab outpatient relearning to walk. Simply moving his big toe for the first time after treatment was such a “big deal,” LaRocco says, that he and his dad teared up when it happened. “Doctors can sit there and tell you all day long that you’re going to regain the feeling in your feet, but … you’re thinking, ‘This is it. It’s going to be like this for life with people feeding me and changing me’ — you just get the worst thoughts.”
Amy Boimare can relate. The 61-year-old registered nurse in Biloxi, Mississippi, contracted GBS in 1999 and has since dealt with slowly diminishing symptoms of post-traumatic stress disorder, which LaRocco has also experienced. “Most people with GBS have had a near-death experience,” Boimare says. For Denise Bradshaw, a business analysit in Omaha, Nebraska, who was diagnosed with GBS in 2011, the condition continues to affect her wallet (health care costs and foods and supplements to manage pain and other lingering symptoms add up), energy level and social life. “You make plans for the weekend, but then wake up that day in either so much pain or fatigue you can’t really manage, so you cancel plans,” she says. Plus, she adds, “People don’t believe you are ‘really sick,’ because I look fine.”
Such lingering symptoms are a big reason Gorson says it’s critical to seek care from a neurologist at a major medical center that’s experienced in caring for GBS patients. “It’s the complications of this disease that cause prolonged hospitalization and increased morbidity and mortality,” he says.
[See: 10 Lessons From Empowered Patients.]
LaRocco knows he’s lucky. He had a strong support system in his wife and employer, who advocated for insurance coverage and proper follow-up care, and he received treatment at a reputable hospital. And although he continues to battle fatigue and a few sensory deficits, he can run, work and, importantly, play with his family (now a foursome) again. “There was life before GBS and life after GBS,” LaRocco says, citing his family’s trips to Thailand and Denmark as evidence of the why-not-now attitude they’ve adopted in the “after” phase. “We look at life differently and make sure [our daughters] do, too,” he says. “We’re having a lot of fun.”
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What Is Guillain-Barre Syndrome? originally appeared on usnews.com
