“My doctor seemed angry with me for not responding to treatments.” “My doctor couldn’t find a diagnosis and just gave up on me.” “If I know what’s wrong, then maybe something can be done to treat it.” Everyone with a headache disorder probably says something along these lines.
Headache disorders are difficult to diagnose. MRIs, blood tests, lumbar punctures…. If one of these turns up something, then there’s a high likelihood of being diagnosed with something concrete. Usually, though, they only rule out possibilities. It may seem like your doctor has given you a diagnosis by default. And that’s usually the case! Some disorders are only diagnosable by process of elimination. Migraine and chronic daily headache are two of those. (I think cluster headaches too, but am not sure). They just don’t show up on tests.
With a diagnosis based on vague information, we keep searching for what’s wrong. If nothing shows up on tests and it can’t be treated effectively, then how can it really be the right diagnosis? No reason to stop looking, but the search can overwhelm you. Also, fixating on one aspect may make you lose touch of other important factors or possible illnesses. I’ve been focused only on migraine for the last six years and I’ve begun to wonder if I’m missing another problem.
You know what patients think when they can’t find a clear diagnosis. What’s it like for a doctor to not really know what’s going on? This New York Times article includes a glimpse into the answer.
“Why do doctors and patients often approach the diagnosis of disease so differently?” Barron H. Lerner, MD asks in When the Disease Eludes a Diagnosis:
But what happens when [severe] conditions are ruled out? In such cases, doctors proceed to search for less dire (and, it must be said, more mundane) diagnoses. The trouble is that at this stage, some physicians, busy with other patients and duties, lose interest.
Part of the problem with these conditions is that existing treatments are not nearly as effective as those for, say, heart attacks and pneumonia. As a result, doctors may grow irritated when patients continually complain of symptoms that cannot be “cured.”
Speaking of a current patient, he wrote:
While trying to be as sympathetic as possible, I find myself reminding Lucy of the limits of certainty in medicine. Despite enormous advances in technology, some diagnoses may remain elusive. I also told her that it was highly unlikely her doctors missed diagnosing a disease that could have been successfully treated. But she remains convinced that she deserves to know exactly what she has.
So we will continue to search.