Alexandria Ostrem credits a fake TV doctor with saving her life.
The bubbly 19-year-old from Bellevue, Wash., loves to dance, ride horses — and watch a lot of "House M.D.," FOX TV's hit drama centering on Dr. Gregory House, a brilliant physician known for solving complex cases.
Last March, without any warning, Ostrem began having trouble walking. Remembering a “House” episode featuring a patient with a similar symptom, Ostrem diagnosed herself with Guillain-Barre syndrome, a sometimes fatal autoimmune disorder that attacks the nerves, first causing tingling and often leading to total paralysis.
Alarmed, Ostrem dashed to the emergency room where a doctor ran a neurological exam that came back normal. Despite her protest that she believes she had GBS, the doctor sent her home. Even after her symptoms worsened and she checked into Overlake Hospital Medical Center in Bellevue, her test results continued to come back as normal. But finally, when she was paralyzed nearly everywhere except for some use of her arms, doctors told her they agreed with her self-diagnosis. Her response to treatment proved they — as well as Ostrem — were right.
Her doctors wondered, though, how she knew of a disorder so rare, it inflicts only 1 in 100,000 per year.
“Well, if you watch too much ‘House,’ you tend to get ideas,” said Ostrem, who, two months after the ordeal, says that her main physical reminder of GBS is fatigue.
Though the TV show, which returns for its sixth season on Sept. 21, is fictional, it’s having a real impact on health care in the United States. Doctors say they're seeing a rise in patients who’ve self-diagnosed a condition they saw on “House.” Unlike Ostrem, few are usually right, doctors say, but that doesn’t stop patients from expecting that physicians will run the complex and costly tests, such as those House routinely runs in the pursuit of a diagnosis. Not only are those tests often unneeded, doctors say, they can drive up the overall cost of health care.
Dr. Scott Morrison, a family physician who writes medical reviews of “House” on his blog, politedissent.com, says more patients are visiting his office to tell him what diseases from "House" they think they have rather than having him just assess their health. One patient insisted she had a copper allergy, like the nun she’d seen in the first season of “House” who was allergic to a copper IUD from her sinful past. (Morrison says none of his patients have correctly diagnosed themselves.)
“When people ask for more obscure [tests], it becomes an issue of supply and demand,” Morrison says. “Is it really justified to order these things that patients want and expect?”
7 years to diagnose a rare disease
The TV show can also create unrealistic ideas about the limits of modern medicine, some health providers say.
While House makes a diagnosis and, in most cases, cures the patient all within the span of one hour-long episode, in reality it takes an average of seven years to diagnose a rare disease, says Stefanie Putkowski, a former nurse who is the clinical specialist at the National Organization for Rare Disorders. And those years are often filled with many misdiagnoses, visits with specialists and suspicions that the problems reside only in the patient's mind, she says.
Of course, misdiagnosing is also common on “House,” but the good doctor's team quickly shifts gears (sometimes to avoid killing the patient) and then House has his a-ha! moment that solves the case and saves the patient. That’s exactly the kind of doctor most patients coping with a rare disease wish they had. Putkowski says many desperate people have been calling the NORD hotline seeking a “real Dr. House” or “specialist of special diseases.”
For people battling a rare condition, seeing real diseases being caught and conquered on the TV show is spurring hope — and anguish.
Michealene Risley says she likes watching "House" for entertainment, but gets frustrated when she compares her own medical odyssey.
Last year, the author and filmmaker was freshly back in the U.S. after working on a documentary about AIDS in Zimbabwe when she felt fatigued, shaky, started having trouble thinking and began hallucinating. As her condition worsened, she saw doctors who told her that she was simply depressed or entering menopause.
Struggling to leave home and sleeping odd hours, the 49-year-old mother of three was forced to leave her 9-5 job.
It took five months — and visits to 21 doctors — before one finally correctly diagnosed her with Lyme disease, a bacterial infection often spread by deer ticks.
That final doctor, she says, did something that all those before her hadn't. “She listened to me,” said Risley, who opted to see a physician who was generous with her time, and got paid well for it, accepting only out-of-pocket payments.
Leigh Jones, of Orlando, Fla., is still waiting to meet a real-world equivalent of House. For 20 years, the 28-year-old has been battling an undiagnosed health issue that has caused symptoms including diarrhea, vomiting, weight loss, anemia, B12 deficiency and lactose intolerance.
She’s seen doctors including an gastrointestinal specialist, obstetrician-gynecologist and a nephrologist whom she believes are focusing too much on their favorite organ system and not on her problems as a whole. “You watch ‘House,’ everything can be considered a symptom,” Jones said. “Doctors out there don’t do that.”
Early on, she was diagnosed with the common irritable bowel syndrome, but her more recent abdomen pain and ulcers in her small intestine are signs of something more serious, doctors have told Jones.
She says she's at the point where she’s just tired of living in limbo. She’s practically desensitized to throwing around scary differential diagnoses, or possibilities for what's wrong. “Whether it’s Crohn’s or cancer, I just want to know so we can start tackling it,” Jones said.
Baffling brain tumor
Doctors say they get equally frustrated when they can’t seem to help a sick patient. Dr. Katrina Firlik, a neurosurgeon for 13 years who has practiced at the University of Pittsburgh Medical Center and now develops medical devices, says there’s a lot of gray area in diagnosing a patient, even when the answer seems obvious.
In her private practice, Firlik and her colleagues at Greenwich Hospital all agreed that the MRI of a patient with a severe headache and speech problems showed a malignant brain tumor. The subsequent brain biopsy found no tumor and the patient’s condition remains a mystery.
It was “very unsatisfying," says Firlik, who felt terrible about unnecessarily cutting her patient’s brain open. She was just as baffled when, a few months later, her patient spontaneously recovered.
Firlik says she wishes doctors had the luxury of working in teams wholly devoted to diagnosing one patient, such as those on “House,” but devoting all that “intellectual horsepower” to one person seems unrealistic.
What patients can do, though, she says, is seek opinions from multiple doctors since both diagnostic tools and doctors can be wrong. “There’s room for debate with many diseases,” Dr. Firlik said. “When people see a definitive diagnosis on ‘House,' they want that in real life. That’s the frustrating reality.”
Hunting for zebras
So why doesn't someone like House exist in real life? Because he's the anti-doctor, Firlik says.
In the medical lexicon, House is considered a zebra hunter, a term for someone who foolishly chooses to seek out the rarest of diseases. In med school, doctors-to-be learn the opposite, summed up by the adage, "If you hear hoofbeats, think horses, not zebras."
In his 13 years of practice, Morrison, the family doctor who writes "House" reviews, says he’s encountered only a handful of patients with the kind of diseases “House” diagnoses each episode. If anything, he says, the show “reminds us there are zebras out there.” But the reality is doctors have to be judicious when ordering medical tests not to overburden the already costly health care system, Morrison says.