Interesting discussion about the prevalence of FND and the validity of the Hoover's sign going on ...

[210272]

... here: virology.ws/.../trial-by-er...

[HiliH]

VERY interesting discussion. Thanks for posting this.

[210272 in reply to HiliH]

You're welcome, HiliH and I'd be interested to read your thoughts about it.

[FindingNewDreams]

I had no functional weakness the day hoovers sign was tested.I do have ADHD and problems following verbal instructions and visualising what I am being asked to do, particularly when I was aware that the hoovers sign was being tested so my overactive brain was trying to analyses what I was being asked to do and why I was being asked to do it in the absence of any weakness to begin with.

So my first pushing of the leg was tentative - not because it was weak but because I wasn't sure I was doing the right thing.

Second leg more successful and I said "hoovers sign" as in "you're testing hoovers sign" to the neurologist.

This has somehow translated itself into my medical notes as "positive hoovers sign" (actually in the diagnostic line) and "the patient recognised herself that the initial weakness resolved". This is in the St George's, Tooting clinic. I do believe there is a case for specialism bias,especially since my double vision issues were similarly misrepresented in a way which suggested a functional convergence spasm (they were described as double at close range whe actually there is esotropia at distance causing problems focusing and double images,later diagnosed by neuro ophthalmology as "myopic esotropia" with no evidence of convergence spasm.

I do worry that the "rule in" diagnosis now means that there is insufficient investigation,particularly among mentally ill women who "fit the profile" with investigations skewed towards a n FND theory .

In my case I have a 10mm (Nov 2019) pineal cyst above the brainstem. Its taken overwhelming head pressure anc a trip to A n E with high blood and head pressure before someone finally agreed that it needed imaging again.

My personal view is that a "rule in" diagnosis can be dangerous if its skewed towards the FND diagnosis and not open to differential possibilities.

[210272 in reply to FindingNewDreams]

Hi FindingNewDreams,

I remember reading about someone who had the hoover's test done on them even though they were not reporting any weakness in that area so I've wondered about its use, since then. If you haven't already had the chance to do so you can leave a report of what happened to you in the comments section under David's blog.

My concern is also about the actual prevalence of FND. If it really is the second most common reason for seeing a neurologist then I wonder why we're not on season 6 (at least) of The FND World Summit, run along the lines of The Migraine World Summit which is patient centric and gathers experts from all over the world to discuss new treatments and what trials are in the pipeline etc etc. As it is the FND Society meet every other year and questions are moderated. I'm delighted that FND-Portal got treated like a 'rockstar' by them but they don't seem to be doing much to prevent the 'dustbin' diagnoses we hear about so often.

Interesting about the pineal cyst and I wonder how common they are amongst people with migraine.

[Crypto127]

Thanks for finding this. It neatly captures something which has always bothered me with research into FND and that is the generalised claims made from minute study populations. That is not good research. I appreciate that Stone et al have opened up the whole hysteria topic to more modern thinking but I don't think they've moved the thinking into the 21st Century. And I do worry about this current movement, even by patient support groups, to seek more physiological basis for functional movement disorders while separating out seizures as the psychological cousin - like we're ruining the wedding reception with our mental issues. If only we did some CBT! And while FND Portal's essay is interesting, I find it profoundly sad that they seem to have found it necessary to reassess early life events to find unresolved trauma: "Time in the FND world helped me cast a new eye on my own history, too. When I participated in a research study on those infamous “adverse life events,” I realized what I’d considered typical experiences might not be." And I fear the medical profession's willingness to champion people with FND who accept the role of trauma in causation. What voice is there for those of us who know that trauma plays no part in developing seizures?

[210272 in reply to Crypto127]

I hear you Crypto127 and I don't have non-epileptic seizures, thank heavens, but it does seem hard for people who do to have their voices heard. Ditto re those who have developed FND downstream from taking antidepressants although I was pleased to see representation from them in the comments under one of David Tuller's blogs.

As for Mr Portal, if memory serves he developed FND after an accident at work and if he has found a link to that (and the consequences of it) via what he now views as adverse life experiences then I'd be interested to know what it is and his views on causes and correlations.

As for Stone and co, an acknowledgment from them that 'functional' still means 'hysterical' in the minds of some doctors (as per Kanaan et al's 'the function of 'functional' a mixed methods review') wouldn't go amiss. So much for a term that was picked partly because it's 'easily used with patients' eh?

[Van604 in reply to Crypto127]

I also had seizures (although haven't had one for 4 years now). My neuropsych drilled me persistently about psychological causes, to the point where I too re-examined my history. He is a pretty good gaslighter. Anyway, I found nothing and photographic evidence, and testimony of my siblings, indicate I'm not in denial. Why can't they just admit that, with the miniscule amount known about the brain, that they just don't know what causes these symptoms?