Part 3: Ruled Out
Twitch
So….
I’d been experiencing sexual dysfunction and had learned that I was hypothyroid. I was still having intermittent sciatic pain and I had the sense that I 
was generally growing weaker. And I’d begun to have these odd “episodes,” which appeared to be but were not cardiac in nature. I had come to understand them as events which were triggered by a certain threshold level of physical exertion.
This was the situation toward the end of 2008: something was wrong and I wasn’t sure what and none of the symptoms were strong or clear enough to lead my primary doctor to a diagnosis.
Then….
The twitching started. We all have little muscle twitches from time to time. They’re annoying but harmless, just a small muscle somewhere on our body having a little party. That’s what I figured was happening one morning as I realized, while sitting in a meeting, that the same muscle in my chest had been clenching rather powerfully every minute or so since the previous evening. The spasm was strong enough that I’d started keeping my hand in that spot, putting pressure on it to try to stop it. It was strong enough that I felt the need to explain to my colleagues why I kept pressing on my chest as we talked.
Eventually the twitching stopped. But not long afterward I developed another twitch in a different spot. Then another. Then they began to overlap and evolve. After awhile they seemed to be happening more or less continuously. At some point I stopped thinking of this as something normal and began feeling like it was a new symptom.
That’s an extremely important diagnostic distinction. When do we cross that cognitive line, when we begin to define a particular experience as a symptom? It’s this line which determines what you include in your account when you’re asked by a doctor to describe what’s wrong with you.
And it can make all the difference in how you’re evaluated. If everything looks like a symptom (and I was just beginning to feel the risk of this happening to me), you wind up flooding the doctor with meaningless information…and very possibly sounding a little crazy. If, on the other hand, you minimize things and include only the most blatant symptoms, you’re likely to leave out the details which will allow a physician to make an accurate diagnosis. Underlying this problem is an unavoidable truth: you don’t know for sure what information is relevant and what is not.
Underlying this decision is a subtle strategic game between doctor and patient. The doctor holds the power to define and thus to legitimize the patient’s condition. The patient, consciously or unconsciously, is always shaping his or her narrative in order to lead the doctor in a particular direction. Sometimes the argument is focused on an explicit diagnosis: I know that I have MS and I want you to recognize this and give me a diagnosis. Other times, the goal of the argument is simply to be taken seriously: believe that there is something wrong with me and help me by giving it a name. And sometimes the argument is negative: please tell me that this is not ALS. But always, there is some sort of a goal behind a patient’s narrative.
At some point my muscle spasms became so continuous and persistent, so genuinely irksome, that in my mind they clearly rose to the level of symptom. They could happen anywhere on my body. It could be one hard muscular jerk, a long series of pulsing spasms, or something more diffuse, an undulating wave beneath the surface of my skin. (“A bag of worms” is how I once heard them described, and it’s a very good description.) When I lay down in bed I watched them ripple through me. I studied them, trying to detect a pattern. Were they related to some behavior that I could modify? Did they increase after exercise? After caffeine? Could I reduce them by meditating or doing progressive relaxation?
Stress is most people’s default explanation for a phenomenon like this, and it was mine as well. But they seemed so independent of my emotional state. Could they be caused by the thyroid medication I’d started taking? I knew that too much thyroid hormone can make a person jittery. But my hormone levels still weren’t as high as the doctor wanted them and the medication hadn’t had any other perceivable effect on me. It hardly seemed likely that I’d jumped from hypo- to hyperthyroid without experiencing any of the benefits.
Then….
One evening my wife looked at me and commented that I’d lost weight. I’d noticed it as well. I’ve rarely paid much attention to my weight. For most of my adult life whenever I stepped on the scales I weighed somewhere between 180 and 190 pounds. It didn’t matter whether I was in full training for a marathon or whether I was barely exercising at all. That was just where the thermostat controlling my body’s weight was set.
At a doctor’s visit in January of 2009 I’d weighed in at 187. A few weeks later when I stepped onto the scale at the gym I was closer to 180. Odd, I thought. My appetite hadn’t changed in any noticeable way. But I wasn’t yet alarmed. Losing a little weight didn’t seem like a bad thing. It was nice that it was happening without any effort on my part.
But it seemed like every time I checked my weight…and I started checking much more often…I was a little lighter.
Just as with the muscle spasms, my mind went first to stress or anxiety or depression as an explanation. I tried to make that explanation fit, because it was an explanation I could do something about. But somehow it just wasn’t right. After decades of therapy I have become deeply familiar with the patterns of my own anxiety and depression. Like a diabetic who has become adept at tracking their blood sugar, I know when I’m depressed, and when I am I know how to gauge just how depressed I am.
I talked it through in my individual therapy, in our marriage therapy, again and again. And I kept coming down to the same simple conclusion: I’d been far more depressed and anxious in the past…and I’d never lost weight as a result.
And there were other changes. The musculature in my arms and shoulders and legs started looking different to me. I was bonier, and my muscles seemed much more clearly defined. As with the weight loss, this looked on the surface like a positive thing. It was as if the fat on my body was melting away. The thing was, as with the weight loss, I’d done nothing to deserve this. I was exercising less and less, trying to avoid triggering the sciatic pain and to stay beneath my ill-defined exertion threshold. It was just happening.
It’s unnerving to watch your body change for no reason, even if the change seems like a good thing. I didn’t know how to make sense of what was happening. I was trying to keep my mind from defining this change in my musculature as “atrophy.”
Being differential
Self-diagnosis, anyone will tell you, is a risky business.
But in the absence of a diagnosis you’ve got little choice but to try to make sense of your symptoms yourself.
And anyway, it’s irresistible to try. It’s a mystery that you feel you should be able to solve. Symptoms X and Y should add up to illness Z. You ought to be able to figure that out.
But of course it’s never so simple.
Symptoms are like the shadows in Plato’s cave. They’re the secondary manifestations of a primary cause (or causes). Often they’re subjectively experienced, often they’re murky and indistinct. Making sense of them can be like trying to understand a joke in a foreign language. Even if you’re reasonably fluent in the language, the subtleties of meaning and the contextual features that make humor work are very hard to catch and interpret.
A single symptom (or a clearly-defined set of symptoms) that is well established as a marker for an illness makes things easy. A headache might mean any number of things. But a malignant mass in the brain definitely means you’ve got brain cancer.
But add any other element and all those dilemmas from Part One of this series come rushing back in. Two or more symptoms that aren’t obviously related to one another. Unstable symptoms that emerge and retreat over time. And most difficult of all, symptoms that are subjectively experienced and not empirically verifiable…like fatigue, perceived weakness, or pain.
That’s why diagnosis is, as the cliché goes, both an art and a science.
The science of the procedure is embodied by something called “differential diagnosis.” In theory this is a systematic process of elimination, considering the possible causes of symptoms, eliminating possible causes until you are left with a single, clear answer. In practice, the art of diagnosis often involves the consideration of contextual information and subjective impressions that go beyond the strict list of diagnostic criteria.
The mechanical process of differential diagnosis can be reduced to a flow chart which is guided by logical operators. If the symptom is a headache, what are all the possible causes? Concussion, meningitis, malaria, typhus, tumor, brucellosis, flu, encephalitis, migraine, common cold, etc. Once a full history of the symptom has been gathered, you can start considering the entire pool, then begin eliminating everything that can be proved not to be the cause.
Differential diagnosis proceeds by a process of ruling out alternatives to the most parsimonious explanation for a given symptom. Rule-outs are especially important – and are usually reasonably easy to establish – for dangerous and debilitating conditions. Your headache could be caused either by stress or by a brain tumor. Being able to feel reassured that it’s not the latter is extremely helpful.
Theoretically this is a systematic process but in fact of course it’s rarely done in an entirely systematic manner. The structure of diagnostic decision-making is narrative and conversational. During a diagnostic work-up information emerges in fits and starts, questions are asked in no particular order. Ideally, at some point in the course of an examination, all of the relevant information eventually comes out, the physician has asked all of the necessary questions.
That’s to say, the supposedly linear practice of differential diagnosis is actually usually more holistic in nature. Further, what is considered is not simply the diagnostic decision-making tree, but the clinician’s subjective judgment. What this feels like. Which is shaped by the particular symptoms and diseases to which the clinician has been exposed. To a physician practicing in the tropics, a patient presenting with Dengue Fever is going to have a certain “feeling” which goes beyond the strict set of objective markers of the disease.
To make a different comparison, as a mental health diagnostician I have learned through experience that there is a certain feeling I get when I’m sitting with someone who suffers from clinical depression. It’s different than the feeling I get when I’m sitting with someone who is suffering from panic attacks. Even before that person has said a word about what they’re going through, possibly even in the initial phone call setting up the appointment, I’m already gathering a diagnostic impression. (This is a subject I’ll be discussing in more depth in a future post.)
And that impression is going to guide my thinking as I formulate a concrete diagnosis. This has both benefits and risks. If I’m able to read people well (if I am able to use my self effectively as a diagnostic tool), I can often zoom in quickly on the best way to help. But on the other hand, I also run the risk of being overly confident about my own impressions, which can lead me either to misdiagnosis someone or to overlook co-morbid conditions. If, for instance, I have a practice which consists largely of clients suffering from trauma, I’m going to be more likely to assume trauma as the cause of a new patient’s symptoms. So I have to figure out a way to build checks into my default diagnostic thinking.
Although medical diagnosis has a stronger empirical basis for much of its process, the same set of issues is unavoidably in play. Because ultimately, as I began this series by saying, diagnosis isn’t simply a matter of physical or mental health. It’s about how we understand our experience. Diagnosis takes place between human beings and in the end it is about how we come to know what we know within human relationships. It is in fact the same process you go through when you try to figure out why your spouse has grown distant. Diagnosis is a profoundly relational event.
