4 ms·

Yeah, so the thing is we don't actually know the underlying cause of Tourette's. It's just a syndrome -- a specific pattern of symptoms you draw a circle around

Yeah, so the thing is we don't actually know the underlying cause of Tourette's. It's just a syndrome -- a specific pattern of symptoms you draw a circle around and label it "Tourette's syndrome." Therefore, what is and is not Tourette's is fairly tautological. If you have these symptoms according to this pattern, you have it. If you don't, you don't. It's entirely plausible that Tourette's syndrome is caused by multiple different underlying pathologies, which actually wouldn't be super implausible given the wildly different ways in which different patients with similar symptoms respond to the same medications. But my point is, the diagnostic criteria are pretty clear, and (most of) these kids aren't matching them. And any time you see a whopping big effect size like that your skepticism lights need to go off. Either you just discovered the find of the century, or you have a basic measurement error. In either case the proper course of action is to subject it to more scrutiny.

derefr 5y ago
I have a feeling that what the people who are "diagnosing themselves with Tourettes" are really trying to say here, then (i.e. "what they'd say if they were all trained psychiatrists"), isn't that they think they have exactly the Tourette Syndrome symptom-cluster; but rather that they think they may have a lesser form of some particular as-yet-unknown pathology that, in its full extent, would be an etiology underlying the syndrome of Tourettes; and that this is causing a cluster of symptoms for them that is similar-but-not-identical to the Tourette Syndrome symptom-cluster — similar-enough that there's nothing really better to describe it by than by comparison to Tourette Syndrome. (Though certainly doctors would come up with a unique name for it in the DSM-VI, if it turned out to not be induced mass Munchhausen's.)
- larsiusprime 5y ago
  I don't necessarily disagree; I went undiagnosed with Tourette's as a kid while presenting symptoms for a good five years and I knew something was going on with me but I had no idea what it could be. Also, a good ~10 years after my tourette's diagnosis I was further diagnosed with cataplectic narcolepsy. I knew I had always had these weird symptoms (going spontaneously limp) that weren't well described by Tourette's, but I was grasping at straws to figure out what it was, and trying to self-diagnose I took myself down all sorts of blind alleys convincing myself I had this or that. Once I was able to get a conclusive diagnosis and actually helpful treatment, my narcolepsy symptoms got very well controlled, and then with that stressor off my back my tourette's symptoms finally became manageable without medication. All the symptoms are still "there" but knowing what I actually have -- and what I don't have -- was crucial to getting the right treatment.
  - derefr 5y ago
    > I knew I had always had these weird symptoms (going spontaneously limp) that weren't well described by Tourette's I wonder how many people who have non-manageable Tourette’s have an undiagnosed comorbidity like this. Also, your specific case is interesting, because a comorbidity of a type of narcolepsy points more generally in the direction of an interesting cluster of sleep-related “parts of the brain’s sleep motor-inhibition filter turn on while others remain off” conditions, e.g. sleep-walking, sleep paralysis, etc. that — if it turns out a lot of other Tourette’s sufferers had [undiagnosed] comorbidities in this cluster — could potentially be a good fit for “recontextualizing” Tourette’s, or perhaps even finding a true etiology for it. Has anyone looked for these sorts of links, and/or studied Tourette’s from a sleep-neurology perspective?

derefr 5y ago

I have a feeling that what the people who are "diagnosing themselves with Tourettes" are really trying to say here, then (i.e. "what they'd say if they were all trained psychiatrists"), isn't that they think they have exactly the Tourette Syndrome symptom-cluster; but rather that they think they may have a lesser form of some particular as-yet-unknown pathology that, in its full extent, would be an etiology underlying the syndrome of Tourettes; and that this is causing a cluster of symptoms for them that is similar-but-not-identical to the Tourette Syndrome symptom-cluster — similar-enough that there's nothing really better to describe it by than by comparison to Tourette Syndrome. (Though certainly doctors would come up with a unique name for it in the DSM-VI, if it turned out to not be induced mass Munchhausen's.)

larsiusprime 5y ago
I don't necessarily disagree; I went undiagnosed with Tourette's as a kid while presenting symptoms for a good five years and I knew something was going on with me but I had no idea what it could be. Also, a good ~10 years after my tourette's diagnosis I was further diagnosed with cataplectic narcolepsy. I knew I had always had these weird symptoms (going spontaneously limp) that weren't well described by Tourette's, but I was grasping at straws to figure out what it was, and trying to self-diagnose I took myself down all sorts of blind alleys convincing myself I had this or that. Once I was able to get a conclusive diagnosis and actually helpful treatment, my narcolepsy symptoms got very well controlled, and then with that stressor off my back my tourette's symptoms finally became manageable without medication. All the symptoms are still "there" but knowing what I actually have -- and what I don't have -- was crucial to getting the right treatment.
- derefr 5y ago
  > I knew I had always had these weird symptoms (going spontaneously limp) that weren't well described by Tourette's I wonder how many people who have non-manageable Tourette’s have an undiagnosed comorbidity like this. Also, your specific case is interesting, because a comorbidity of a type of narcolepsy points more generally in the direction of an interesting cluster of sleep-related “parts of the brain’s sleep motor-inhibition filter turn on while others remain off” conditions, e.g. sleep-walking, sleep paralysis, etc. that — if it turns out a lot of other Tourette’s sufferers had [undiagnosed] comorbidities in this cluster — could potentially be a good fit for “recontextualizing” Tourette’s, or perhaps even finding a true etiology for it. Has anyone looked for these sorts of links, and/or studied Tourette’s from a sleep-neurology perspective?