While most people don't anticipate becoming a "medical mystery," the path to an accurate diagnosis can be "surprisingly complex, strewn with cognitive land mines, logistical roadblocks and red herrings." Writing for the Washington Post, Sandra Boodman offers five tips for patients on how to avoid becoming a medical mystery.
Medical mysteries happen
Over the past decade, Boodman has profiled more than 115 medical mysteries in a monthly column. While some involved extremely rare symptoms and conditions, many have stemmed from diagnostic errors made by medical professionals who focused on a suspected condition and ignored evidence that would eventually lead to a patient's true diagnosis.
"Patients and their families sometimes contribute to the problem. Some fail to ask questions, or insist on sticking with a doctor who lacks expertise or interest," Boodman writes. "Others hopscotch among experts—although not necessarily in the right specialty—without consulting a primary-care doctor whose job is to make appropriate referrals and coordinate care."
5 tips 'to avoid becoming a medical mystery'
To avoid these "common pitfalls," Boodman offers five suggestions based on the experiences of people whose mysteries were ultimately solved:
1. Gather your medical records
According to Boodman, "[m]edical records serve as a road map for diagnosis. Even if the jargon seems impenetrable, Google and other sites increasingly make it possible to decipher what they say."
The widespread adoption of EHRs and federal guidelines designed to expedite the process have made it much easier to obtain a complete copy of your medical records.
2. Be insistent and follow up with your doctor
"Many patients, fearful of being thought a pest, assume that a doctor will inform them of test results or return their calls," Boodman notes.
While doctors are generally supposed to call patients with test results or other news, medical offices can be very busy, and sometimes disorganized. "It is never safe to assume that no news is good news if you're waiting for test results or that someone will call you back," Boodman writes.
3. Bring someone to your appointments
While many patients go to their appointments alone, they often underestimate the stress and confusion that can surround appointments, especially for complex problems.
Boodman suggests bringing a trusted friend or family member to act as an advocate and support system. "Some patients get lost in the weeds of the narrative, are unable to describe their problem cogently, or simply can't absorb what the doctor is saying," Boodman writes. "Many are too rattled or distracted to remember crucial details."
4. Be informed
Ultimately, when patients are passive or uninformed about their health, Boodman suggests they "can significantly prolong or entirely derail the diagnostic process."
5. Trust your gut
For over eight years, Heidi Gribble Camp, who was profiled in one of Boodman's monthly columns, experienced "stabbing back pain."
In 2014, Camp had lost 10 pounds in just a few months, and the intense pain had moved to her abdomen, triggering nausea. An X-ray revealed an unusual bone spur on her spine next to a filter that had been implanted in her inferior vena cava—the largest vein in the body—to prevent blood clots after she experienced a ruptured ectopic pregnancy in 2006.
Since its implantation, the filter migrated and broke, causing it to penetrate the walls of her vein. Notably, Camp asked several doctors about the filter over several years. However, they all told her the filter was not related to her pain and assured her that it did not need to be removed.
With the assistance of a friend, who is a radiologist, Camp discovered an FDA warning that urged doctors to remove filters that were no longer necessary. From 2010 to 2014, the agency received over 900 reports of severe injuries and deaths linked to the filters.
"I was panicking," Camp recalled, worried that the device might splinter again and pierce her heart.
On June 18, 2014, Camp's filter was removed in a 20-minute outpatient procedure at the University of Pennsylvania. "It was the best day of my life," said Camp, whose pain vanished almost instantly.
"But her fury at the doctors who brushed her off lingered," Boodman notes. (Boodman, Washington Post, 12/4/2016)