It’s February 2022. As I pull into the parking garage of a local hospital, I review the progression of the unknown condition that’s brought me here. At today’s appointment I’ll recount its many symptoms, a constellation of afflictions that’ve launched a profound assault on my quality of life. I’ve rehearsed the story, cautiously trimming inessential details. There’s much to express in a limited timeframe, and I can’t risk babbling incomprehensibly; if I want to get closer to a diagnosis, I’ll have to present a coherent narrative. I’m bordering on desperate, doggedly trying to uncover the culprit that’s ravaging my body. Over the past two years, numerous doctors have evaluated me. None of them have offered an adequate diagnosis. The madness has to stop.
Four years ago, I observed left elbow pain and a dull ache at the back of my left hand. They were mild discomforts exacerbated by certain physical activities: weightlifting, long bouts of typing, and sustained phone usage. I acclimated and didn’t seek care until two years later. During that gap, my condition dissuaded me from going to the gym, which was once a staple in my life. I spent long periods of time fixed to a computer for work and later for a post-baccalaureate program. When I eventually made my way to an orthopedic specialist, I was assumed to be a physical therapist’s calling. There was no cause for concern. Then, my presentation evolved dramatically.
I developed burning at the back of my hand. Fingertip symptoms followed: paresthesias and sharp pain triggered by exertions such as typing on a keyboard or tapping on a phone. I felt deep forearm fatigue that escalated to burning. Over time, the symptoms have become bilateral, present at both sides of my body.
More recently, I’ve been met with the onset of burning at the trapezius, shoulder, clavicle, and chest. There are tender spots present laterally at the front of my neck; palpating some of them triggers mild pain down parts of the shoulder, chest, and arm. Even my armpits occasionally hurt.
For the longest time, I’ve dealt with soreness high up at the back of my neck. It’s prompted me to change pillows multiple times. As my symptoms have progressed, the sensation has morphed into a deep ache accompanied by occasional discomfort that rises up the back of the head.
My medical history is dizzying and elaborate. Yet, I’ve been allotted just 20 minutes to communicate its entirety to my new primary care doctor.
Ironically, spelling out my assortment of pains will literally be painful. Half a year earlier, a laryngologist diagnosed me with muscle tension dysphonia, a voice disorder that can cause pain at the throat when speaking. At our appointments, she’s observed excessive tension in the muscles around the voice box when I speak, but the tension isn’t secondary to any abnormality in the larynx. In these cases, she’s described, there’s often mechanical misuse of the voice. The gold standard for treatment is voice therapy, which I’ve undergone for months to no avail.
Over time, I’ve become skeptical. My throat issue exhibits curious characteristics that make me wonder about its place in the broader diagnostic puzzle. Parts of the front of my neck are always in pain, even when I’m at rest. It’s as if I’m being incessantly choked, and the surrounding area feels inflamed. The discomfort is diffuse, running inferiorly along the front of the neck.
I suspect that most or all of my symptoms have a common link. Without objective proof, this idea is mere conjecture. Still, I can’t help but wonder: is there a unifying explanation?
An appointment at Highland
When I reach the hospital lobby, an employee offers me directions to the Adult Medicine clinic. I thank her and head toward the sixth floor of Highland Hospital, the main county hospital and trauma center for Oakland, California. A lynchpin of acute care in Alameda county, Highland serves a diverse patient population, including the poorest of the poor. The hospital is the subject of The Waiting Room, a 2012 documentary that profiles its strikingly busy emergency room. Highland is where my grandmother received care in 1992 when she first came to America. It’s now where I stand, 30 years later, seeking care after eschewing my previous health system. The complexity of my case, I’ve reasoned after finding no answers elsewhere, requires tenacity and empathy. If I can find these elusive traits somewhere, then I’ll probably find them at Highland.
But even as I ride up the elevator, I feel indignant – doctors have often dismissed my concerns. I, like every other patient, have a story to tell. Whether anyone is willing to listen is a different matter. I’ve frequently witnessed a problematic behavior: the willful disregarding of a patient’s context. Some doctors I’ve encountered simply ponder the symptoms in isolation without regard for the holistic picture. Because such an approach has produced inadequate results, I’ve become wary of haughty clinicians who readily dismiss the notion that narratives matter. Surely the diagnostic process is compromised when it’s subverted by ego. I have a story to tell, facts to divulge, and I need someone to listen.
In the examination room, my fears are quickly assuaged by an unassuming doctor who looks to be in her early 30s. As she walks into the room, she apologizes for the wait – it’s been a busy morning. I tell her it’s fine, but that I have quite a complex case to present. Seemingly unfazed, she invites me to share my concerns. Then, she takes a seat, orients her chair to face me, and goes quiet. A palpable silence permeates the room. It’s her way, I suppose, of making it clear she’s keen to listen. Accordingly, I unleash a torrent of details.
I’m a 27-year-old male with a history of weightlifting and repetitive motion at the computer. I have no known family history of genetic illness. My symptoms have progressed over the course of about four years and are highly positional in nature. For example, typing triggers a sharp pain accompanied by lingering burning at the fingertips. Driving is uncomfortable for the forearms. Wearing a heavy backpack aggravates the more proximal -higher up along the arm and toward the neck- discomforts. I have no known comorbidities -simultaneously present diseases- except for a slight spinal disc bulge at L5-S1. I exhibit neither motor weakness nor cognitive impairment.
I’ve had an extensive workup: MRIs of the cervical spine, brachial plexus, and elbows; x-rays of the hands and chest; an assortment of blood and urine tests; electrodiagnostic tests; corticosteroid injections. The test results have been unremarkable. The situation is still developing: up until recently, my symptoms manifested only from the elbow down. A while back, a hand surgeon entertained the idea that I could have carpal tunnel syndrome and radial tunnel syndrome, implicating two compression syndromes below the elbow. Though diagnostic tests came back negative for carpal tunnel syndrome, a second hand surgeon and I discussed the possibility of false negative results. Given the numbers projected by studies, we reasoned false negatives were possible, if unlikely. I underwent a carpal tunnel release surgery effectively as a diagnostic measure. Unfortunately, the surgery hasn’t alleviated any fingertip pain.
As I rattle off detail after detail, the doctor’s face betrays growing concern. She declines to say much during the appointment, which is dominated by the telling of a lengthy history. This behavior, the act of listening, is rare. As the physician-writer Lisa Sanders points out in Every Patient Tells a Story, studies find that doctors frequently interrupt patients:
In recordings of doctor-patient encounters, where both doctor and patient knew they were being taped, the doctor interrupted the patient in his initial description of his symptoms over 75 percent of the time. And it didn’t take too long either. In one study doctors listened for an average of sixteen seconds before breaking in—some interrupting the patient after only three seconds.
My anecdotal experience has been consistent with these findings. So it’s odd, delightful even, to get a chance to convey information without being interrupted. Perhaps, I think to myself, I’ve found a willing participant in my endeavor to make sense of a body in physiologic crisis.
After hearing my monologue, the doctor acknowledges my pain without purporting to have special insight. There’s a stark difference between her and previous doctors, many of whom had acerbic tongues quick to proclaim a differential diagnosis – a list of probable medical conditions. We agree on a plan: she’ll refer me to several university clinics for further evaluation, and we’ll follow up in a few weeks. In the meantime, we should consider pain medication as well as conduct more tests. She tells me we’ll systematically evaluate the possibilities. And systematic we’ll have to be: my situation is out of the ordinary.
A statistical misfortune
As it turns out, my situation is actually statistically rare. On the whole, US adult outpatient care produces laudable results. A 2014 report estimates its diagnostic error rate to be a mere 5%, which amounts to an accuracy rate of 95%. But a small percentage of a large number is still a large number. In the end, approximately 12 million American adults are susceptible to diagnostic errors each year. Other studies produce varying estimates, but suffice it to say that a material number of people are either misdiagnosed or receive delayed diagnoses. Healthcare practiced at scale begets statistical misfortunes, and I’m one of them.
But there are more data to consider. It appears I’m a statistical misfortune in more ways than one. I belong to another unfortunate group: the collection of people suffering from high-impact chronic pain. The Centers for Disease Control and Prevention (CDC) defines high-impact chronic pain as chronic pain that’s limited life or work activities on most days or every day during the past 6 months. A startling 19.6 million people fit this description. Roughly 3.7 million of them, an estimated 4.4% of American adults, are between the ages of 25-44. I’m currently 27 years old.
While it’s interesting to consider the improbability of my circumstances, the data tell me what I already intuitively understand: my current experience is not the norm.
A new hypothesis
A few days after my appointment at Highland, I arrive at my hand surgeon’s clinic for a post-op appointment. It’s been roughly two weeks since my carpal tunnel release surgery. The surgeon’s physician assistant sees me, and I describe the recent emergence of new symptoms.
We also discuss other oddities. For a few days after surgery, I held my right arm high during showers to avoid wetting the incision site. The experience, I tell him, has made me aware that the glove-like burning at my hands increases in intensity when I hold an elevated position. I disclose that my hands become abnormally cold when the ambient temperature drops below the low 60s in Fahrenheit. They turn red easily as well. What’s more, my feet are often painfully cold. Sometimes I need to walk for a mile before they warm up. There’s also the matter of my throat, which is ostensibly impacted by a separate mechanism of injury. But are we sure that’s the case?
The physician assistant listens intently before commenting. I wonder whether I’ve overwhelmed him, whether this is the wrong place and the wrong time to be delving into such minutiae. But he appears equanimous and deep in thought. He notes it’s curious that some symptoms worsen with raised arms. After a lengthy pause, he asks a question that sparks a new hypothesis: has anyone ever evaluated me for neurogenic thoracic outlet syndrome?
 Sanders, Lisa. Every Patient Tells a Story (pp. 6-7). Harmony/Rodale. Kindle Edition.  Singh H, Meyer AN, Thomas EJ. The frequency of diagnostic errors in outpatient care: estimations from three large observational studies involving US adult populations. BMJ Qual Saf. 2014;23(9):727-731. doi:10.1136/bmjqs-2013-002627  Dahlhamer J, Lucas J, Zelaya, C, et al. Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:1001–1006. DOI: http://dx.doi.org/10.15585/mmwr.mm6736a2external icon.
A brief update
The above post ends abruptly because the saga it depicts is still ongoing. There’s no neat conclusion – at least not yet. When there’s enough material to provide a meaningful update, I’ll write a second part. As of April 2022, my care team and I are concurrently exploring different possibilities. I have appointments scheduled with a couple of University of California, San Francisco (UCSF) clinics: the Voice and Swallowing Center as well as the Neuromuscular Clinic. In addition, I’ll be headed soon to the University of California, Davis (UC Davis) Thoracic Outlet Syndrome Clinic for a consultation. In the meantime, I’ll undergo further tests: more MRIs and additional bloodwork.
In my opinion, the most likely diagnosis is neurogenic thoracic outlet syndrome (nTOS), a condition characterized by compression of the brachial plexus. The brachial plexus is a network of nerves near the shoulder, and its compromise can cause a multitude of symptoms. An exploration of nTOS warrants its own piece – one Johns Hopkins doctor has described it as one of the most controversial and difficult diagnoses in all of medicine. It’s a widely misunderstood condition.
In any case, I strive to remain open-minded. We may learn new information that implicates an entirely different disease. Or I may have multiple conditions. The fact remains that we don’t know yet.
I’ve received much advice about how to handle the diagnostic process. The most common piece of counsel is really more of a warning: “don’t self-diagnose.” It comes from well-intentioned and often educated folks who implore me to trust my doctors. My response is that I do trust my doctors, especially my current ones. But my policy nowadays tends to be, “trust, but verify.” I’ve learned the hard way that it’s imperative for the patient to get involved with difficult diagnoses. It’s usually tough to convince those who’ve never experienced a similar situation to believe this is the right course of action. Even just half a year ago, I would’ve been skeptical myself.
But perspectives can and should evolve. I’ve realized it’s impossible for doctors to know everything about every disease. This limitation holds true even for specialists. There’s simply too much information abound in the literature to form a complete understanding of any field of medicine. When I began digging into research to better educate myself, I was startled by the dubious claims and blatant mistruths made by clinicians I was supposed to trust. In the end, it’s best to be informed and armed with the right questions. Luckily I’ve found receptive doctors, ones who don’t claim to hold a monopoly on hypotheses.
All said, I’m hopeful that answers are on the horizon. I’ve done my best to play my part – to help my doctors help me. The best thing to do now is to be patient.