Updated: Friday, September 29, 2017, 2:28 PM
In an awful way, it all made perfect sense, Gail T. Wells remembers thinking as neurologist Thy Nguyen matter-of-factly explained that she was ordering tests to check for an underlying cancer. Cancer would explain the worsening symptoms — abdominal pain, incessant cough, weight loss and crushing fatigue — that had plagued Wells.
“I felt like I was dying,” said Wells, a nurse-practitioner, of her initial meeting in February 2016 with Nguyen, an assistant professor of neurology at the University of Texas Health Science Center in Houston. Wells broke the news to her husband and their four grown children, reviewed her funeral arrangements, and tried to steel herself.
Four days later, the neurologist called with surprising news. “You could have told me I was pregnant, that’s how astonished I was,” recalled Wells, who was then 62.
In 2005, after years of working in hospitals, Wells founded a primary-care clinic in Houston to treat people who were uninsured or underinsured. In 2013, when her husband retired, Wells did, too. She sold her clinic, and the couple spent the next two years traveling to Portugal, Spain, Italy, and the Caribbean, trips that Wells found increasingly joyless and difficult. She noticed that normal activities, such as walking for exercise in her neighborhood, were becoming physically taxing.
Some days, she didn’t have the energy to get out of her pajamas. Once or twice a month, she would awaken from a sound sleep with intense abdominal cramps. Wells had also lost about 10 pounds between 2013 and 2015, which she attributed to better eating habits and the elimination of the two glasses of red wine she habitually drank after work.
In August 2015, Wells’ left leg and lower lip suddenly went numb, and her tongue began tingling. Wells saw a neurologist. A test showed decreased rates of nerve conduction in her left leg and both feet. Because no underlying cause could be found, Wells was diagnosed with idiopathic degenerative neuropathy — nerve deterioration for no apparent reason — and advised to stay physically active to preserve muscle function. But her feet felt constantly numb and cold. She wore wool socks around the clock and slept beneath an electric blanket and two comforters.
Her cough worsened, and Wells periodically felt short of breath, even though a chest CT scan and a TB test were normal. “I felt like I was aging super-fast,” she said. “I thought, ‘How do people manage in their 70s and 80s?’ ”
In February 2016, she consulted Nguyen for a second opinion.
“I remember she was tearful,” Nguyen said. “She said, ‘I’ve been looking forward to retiring, and now I can’t do anything.’ ”
Her neurological exam, Nguyen added, was consistent with the weakness she described. Nguyen decided to repeat the nerve-conduction test, which showed a significant worsening.
“Things were going kind of fast, and that’s very unusual,” Nguyen said. “At that point, you have to start thinking out of the box.” The neurologist ordered sophisticated blood tests, suspecting a paraneoplastic syndrome (whose symptoms are caused by substances circulating in the blood in response to a cancer), elevated levels of vitamin B6 or Sjogren’s syndrome, an autoimmune disorder that attacks mucous membranes and joints.
Four days later, Nguyen received the results and was surprised to see that Wells was infected with hepatitis C, a potentially fatal disease that can cause liver cancer.
It’s most common among Wells’ generation: baby boomers born between 1946 and 1964. It is also an occupational hazard for health-care workers, the result of accidental needlesticks or other contact with a patient’s infected blood. Before 2014, there were no oral medicines specifically approved to treat hepatitis C, which was discovered in 1989.
“I was gobsmacked” by Nguyen’s news, Wells recalled. She knew, and had told all her doctors, that she had been exposed to another infection, hepatitis B, years earlier, most likely in 1983 while working in an emergency room on a drug dealer who was bleeding profusely after a machete attack. Days after that, she had tested positive for hepatitis B. Like 95 percent of adults, Wells cleared the virus from her system and then became immune to hepatitis B.
But most adults are unable to clear hepatitis C from their bodies and unknowingly go on to develop a serious, chronic infection that can fester for years, damaging their livers. Wells suspects that she was exposed to hepatitis C during the same episode because coinfections were common in those days. But her liver function tests had always been normal.
So what, exactly, was the cause of her symptoms? Wells turned out to have a rare disorder caused by hepatitis C known as Type 2 mixed cryoglobulinemia. It occurs when cryoglobulins — abnormal proteins in the blood — thicken and clump together, restricting blood flow to surrounding organs and causing damage to blood vessels. Cryoglobulins often develop in response to hepatitis C or an autoimmune disorder, and can prompt fatigue, abdominal pain, weakness, neuropathy, and Raynaud’s disease, a reaction to cold temperatures or stress that can result in a narrowing of blood vessels.
“It’s the most common manifestation of hep C outside the liver,” Nguyen said. “In Europe, it’s more commonly recognized.” The disorder was overlooked, Nguyen speculated, because Wells’ symptoms — abdominal pain, numbness, fatigue — are common to many other diseases. And before Nguyen, no doctor had ever thought to screen Wells for hepatitis C.
Wells consulted a liver specialist, and in the summer of 2016 began a 12-week course of treatment with Harvoni, a medicine that costs about $92,000 and is considered to effectively cure hepatitis C. The cryoglobulin count in her blood steadily decreased, and by April of this year it was undetectable.
Nearly all of her symptoms, except the leg numbness, disappeared. “I was just so relieved to have a cause,” she said, “and so blown away that we actually had a cure.”
Read full story: Medical mystery: It wasn't cancer, but it was a shock