Like sausages and democracy, what actually happens behind the curtain in medicine can be quite ugly.
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Recurring chest pain and other cardiac symptoms that cannot be adequately explained by organic pathology are common and can be associated with substantial disability, distress and high healthcare costs.
Once again, add just one word, and everything changes.
Recurring chest pain and other cardiac symptoms that cannot be adequately explained by known organic pathology are common and can be associated with substantial disability, distress and high healthcare costs.
Yes and that’s a very important point but even then it doesn’t get us over the line to where we want medicine to be, because using that language still doesn’t exclude the possibility that all known organic pathology hasn’t actually been tested for or tested for appropriately.
This is why just changing the term FND to something else wouldn’t fix everything.
The other core problem besides the proliferation of cheap psychological labels that can be slapped on any set of symptoms in area of the body (see functional cardiac issues above) is the weakness of the diagnostic process for too many medical professionals. It’s as simple as that.
Instead of FND I could have had my symptoms labelled with another more factual/neutral term like idiopathic neurological issue or medically unexplained neurological illness or whatever.
That wouldn’t have helped me. It wouldn’t have actually been identifying the actual cause. It wouldn’t by itself let me know as a patient that everything had been done to exclude all known organic disease within reason.
it also wouldn’t stop other medical professionals, friends and family or strangers from assuming that this label *actually* means that it’s all in my head, even if the intention of it was fully to communicate that there is an illness that hasn’t yet been identified.
Just as previous doctors gave up on me by talking about stress etc, and previous neurologists gave up on me by diagnosing me with FND, if at the same points in my journey I had been labelled with another, better label (MUS - take your pick) then it would represent the same abandonment of me as a patient, the same lack of medical rigor, the same insufficient testing, the same lack of frankly just thinking with appropriate depth about my symptoms.
I only got an actual evidence based diagnosis of a physical pathology by refusing the FND label and insisting that I receive all appropriate tests to exclude known neurological (and other) illnesses.
Idiopathic illness X, medically unexplained symptoms, any term old or new would have represented the same failure of medicine in my case.
They would have missed the actual existing, physically present condition that was waiting to be proved with the right test. It’s a mystery just isn’t going to cut it when you’ve failed to actually do your job properly.
Why did I have to be the one conscious of the possibility that my symptoms (or some of them, I have a LOT) were caused by SFN? Am I a neurologist? Am i a doctor? Did I go to medical school for 5 years?
No.
So what’s going on here? The problem was not identifying potential causes and working systematically to exclude them - it wasn’t just that there’s this name FND for this highly dubious (I’m being polite) supposed clinical entity, it’s that they were FAILING to identify the actual cause which is a known physical pathology. They weren’t thinking it through. They didn’t know enough. They didn’t care enough. They were bad at their jobs.
Because of the weakness of their process they couldn’t even identify SFN as a logical explanation, so they never tested for it.
Or they didn’t understand how one actually tests for SFN and they thought that EMG and NCS tests could pick it up, when they can’t. That would be a straight up lack of understanding of their own field. Later on when seeing more neurologists I had learned this myself and so I knew it was nonsense when they argued it was unnecessary.
None of this would have been improved by giving me another label that isn’t FND and terminating the diagnostics process there. If I hadn’t researched and understood, if I hadn’t pushed and pushed, if I hadn’t slapped down sloppy nonsense ‘practice’ then I would be sitting here without knowing what’s wrong with me and without any physical evidence to point to to prove that my illness isn’t psychological.
Now of course I agree the name and clinical entity FND is huge problem. Of course. I can’t see the letters without getting irritable.
And of course the term and clinical entity invites bad diagnostic practice itself because it gives medical professionals a tantalisingly quick and simple diagnosis that involves minimal testing. Its existence invites its own abuse as a diagnosis, even beyond the shadiness and deception in its background.
But beyond that we are often just confronting a sloppy, lazy, unscientific approach to diagnosis.
We’re talking about doctors without up to date knowledge of their field. We’re talking about shortcuts piled upon shortcuts piled upon shortcuts. We’re talking about overworked doctors wanting quick diagnoses. We’re talking about doctors who over-estimate their own abilities. We’re talking about a sheer lack of imagination, not being able to think through the possibilities.
Right near the start of my sensory neurological symptoms I thought “it feels like my nerves are being damaged”.
Seven years later I had that damage confirmed. I’m just a layperson with limited biological or medical knowledge, but all I had to do to correctly intuit what was happening to my body was to experience my symptoms and think about how those symptoms could logically be produced biologically.
I followed a simple logical chain and extremely basic biological knowledge (uh, what is responsible for sensations in the skin?) and arrived at the right conclusion.
For multiple reasons I didn’t learn about SFN in the right context until many years later, but it should be obvious to somebody who went to medical school what could cause such symptoms.
I don’t know, I’m just so an angry. This is a terribly written, rambling post but I had to make this point. The arrogance of doctors is truly beyond all understanding when they can be this bad at their jobs, again and again and again.
It isn’t just FND and it isn’t just neurology. It isn’t just functional disorders, whatever area of the body they apply to. I see this sheer sloppiness whereever I go in medicine on my personal health saga.
Im sick to death of doctors taking a bit of history, doing 1-2 tests, saying they can’t find anything wrong and sending you off with an air of OOH LOOK AT ME AND MY TWO TEST RESULTS AND WHOLE 5 MINUTES SPENT THINKING ABOUT THIS IM SO PROFESSIONAL. That’s their idea of ‘thorough’ and I dread to think how many patients go misdiagnosed and undiagnosed and how much harm that causes.
The problem is deeper here. The whole profession needs to get its act together.
Because all of too often I encounter doctors where I think “is this seriously how you do this, is this seriously how it works in this field?” Most of the time it seems like they can’t identify anything and do the least effort possible.
Its very often either “we can’t find anything” to obvious symptoms or it’s them quickly making a dubious diagnosis based on scant evidence, assumptions and bias.
I’ve had it up to here with the medical profession frankly. Based on my experience and accounts I’ve read, for complex health problems and chronic ones the medical field gets a D- grade.
There was something about the futility of the debate over the dubious (polite) term FND for the dubious (polite) diagnosis FND that triggered me. I’ve grown tired of dancing around the bush with this point when we are just talking about bad, sloppy practice in a field that couldn’t be more in need of intense rigour.
Rant over. Very ill and depressed today.
Yahat fordn'ny dusrpsie me. And hour uneditend post looks very much lopke mine do before editi
ing.
and phone autocorrect 'auto-wronging'
