The Dark Truth Behind the 4% Misdiagnosis Rate in Functional Neurological Disorder
2
When presented with a misdiagnosis rate for FND of just around 4%, it sounds impressive - who wouldn’t be tempted to jump on the bandwagon? Surely this means doctors have the disorder all figured out, backed by mountains of rock-solid, empirically proven evidence. Right? A disorder that is believed to live on the fringes of neurology and psychiatry - what could possibly go wrong? Stone et al., 2005, BMJ (doi:10.1136/bmj.38628.466898.55) Stone et al., 2010, Brain (doi:10.1093/brain/awq068) Carson et al., 2012, JNNP (doi:10.1136/jnnp-2011-301993)

One glaring issue is that this percentage comes from seemingly limited, retrospective pre-FND (conversion disorder) criteria studies, making it hard to judge data quality or completeness (I would love to get my hands on that data), but let’s just pretend that’s fine for now.

If, however, we consider that FND is a disorder that is conceptionally defined into existence, then applying percentages to this disorder seems inappropriate, a category error akin to declaring referred pain an illness and sending all cardiology patients home.

However, if we accept and invert this percentage and view it through the lens of a traditional understanding of functional disorders (traditionally used as placeholders and still very much so in a lot of cases), it reveals a darker truth. Nettleton S. (2006). 'I just want permission to be ill' Barsky AJ, Borus JF. (1999). Functional somatic syndromes

It would literally mean that a staggering 96 percent of patients in the reviewed practices included in these studies never found a real answer for what is truly wrong with them (Doctors bragging about the misdiagnosis rate being as low as 1% might want to take a moment for some serious introspection).

Could this reflect diagnostic bias (e.g. once a FND diagnosis was made, further investigation stopped) or a genuine inability to find any underlying causes, due to limitations in current medical knowledge or technology?  Croskerry, P. (2013). From Mindless to Mindful Practice — Cognitive Bias and Clinical Decision Making. Or could the constant comorbidity claims simply act as a diagnostic shield, making the disorder unfalsifiable? Once comorbidities are layered on, misdiagnosis becomes almost impossible to prove.

Given this quote from the DSM-5, "After a thorough neurological assessment, an unexpected neurological disease cause for the symptoms is rarely found at follow-up," I suspect that the former is at play here. American Psychiatric Association, DSM-5, p. 364

Don’t get me wrong. If FND is simply used as a construct, for example, when doctors cannot pinpoint what is wrong with their patients but can at least provide some kind of generic treatment plan through a multidisciplinary approach, it might provide relief to some (in addition follow-ups to assess and re-assess symptoms should be required once this diagnosis was made).

We shouldn’t throw the baby out with the bathwater.