By , Lindsey Lanquist
Published December 16, 2016
Three months ago, UK woman Helen Finchman woke up with a neck ache. She just assumed she'd slept in an uncomfortable position and went about her morning as she normally would. But as the day went on, the 21-year-old reportedly grew unable to feel her legs or arms. Before long, she suffered what she thought was a heart attack when her arms began tingling and she had difficulty breathing. By the end of the day, Finchman was paralyzed. As it turns out, her sleep wasn't the root of her neck pain, after all. The ache was a symptom of transverse myelitis, an extremely rare neurological condition involving spinal cord inflammation.
Transverse myelitis is a rare inflammatory disease, affecting nearly 1,400 Americans each year. (For some perspective, that’s about 0.0004 percent of the U.S. adult population.) Women are at higher risk of contracting the disease than men, and it most commonly affects people under 40. The causes of transverse myelitis aren't fully understood, according to Roumen Balabanov, M.D., neurologist at Northwestern Memorial Hospital. But David Rabinovici, M.D., neurologist at NY Neurology Associates, tells SELF that sometimes the condition is linked to infections like syphilis, lyme disease, and measles. Other times, it appears without warning. Symptoms—neck or back pain, weakness, tingling or numbness, and bladder or bowel disfunction—can present themselves in a matter of hours or over the course of several weeks. In Finchman's case, the symptoms presented rapidly, only taking one day to escalate to paralysis.
"When I realized I could no longer feel my legs I was horrified," Finchman told Metro. "It was like I had become paralyzed overnight—my whole life had been turned upside down in a matter of hours."
Though Finchman's story is terrifying, experts say transverse myelitis is rare. "People shouldn't get too panicky about this," Rabinovici says. Neck pain happens, and most of the time it's not indicative of a greater problem.
So when should you get worried? If you have unexplainable neck pain (you haven't engaged in an activity—like working out for the first time in a while—that would have caused it), or if your neck pain is accompanied by some of the transverse myelitis symptoms, you should go to the emergency room immediately. Otherwise, Rabinovici says, "Neck pain is not going to be any more serious than a pain in the neck."
In some instances, transverse myelitis will lead to another autoimmune disease, like multiple sclerosis or lupus, according to Balabanov. While patients are being treated, they need to be tested for other possible chronic diseases, he says. The patients should also be monitored for new symptoms every 3 to 6 months. "Most patients recover completely," Rabinovici says. This recovery process could last anywhere from two weeks to several months, depending on the severity of the transverse myelitis. "Unfortunately, not everyone has a complete resolution—it's variable," Claire Riley, M.D., neurologist at Columbia University, tells SELF. The possibility of a full recovery is more likely with a swift diagnosis and regular treatment, Balabanov says.
"Life with transverse myelitis varies tremendously," Rabinovici says. "Most people start to respond to treatment after a couple of weeks—especially if they're seen right away." If the transverse myelitis is the result of an infection, doctors need to identify the source and treat patients with antibiotics or antiviral medication, Balabanov says. If not, the condition can be treated with steroids to limit inflammation and restore bodily function.
Three months have passed since Finchman became paralyzed, and she can now reportedly feel some sensation when touched. She also has limited movement in her hands. "My next goal is to be able to get in and out of bed by myself," she said. "Some days are really difficult, but I keep going and try to stay strong for my family and friends." We wish Finchman a steady and full recovery.
Finchman's sister started a crowdfunding effort to cover her sister's health expenses—including any adaptive equipment she now needs. If interested, you can donate here.