In this episode of the Neurology Podcast: Prof. Jon Stone and Drs. Selma Aybek, David Perez, and Sarah Lidstone discuss diagnosis & treatment in the last episode of our three-part series. Listen Now: bit.ly/3t2su3a
When I pressed 'play' on the image in Neurology Journal I only got about 30 seconds of it but by clicking the link I got the whole thing.
The idea that FND is, somehow, different from other conditions in that no 'one size fits all' when it comes to treatment, is bizarre. There's no one size fits all for MS or migraine or MdDS or epilepsy or Parkinson's or Alzheimer's etc etc.
I like the idea of drs walking with patients on their therapeutic journeys but, pragmatically, the NHS simply doesn't have the resources for them to do that.
It would be interesting to know if more patients than doctors listened to these podcasts and I'd also like to know if the doctors who diagnose people with FND have a duty of candour to tell patients that they now have a DSM dx.
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Thank you for your post. If would be great if the neurologist could regularly follow up, or at least some team member not that we have been appointed a multi-disciplinary team as the OT failed to show up when we needed them (after rejecting him 3 times). Sadly, like you mentioned our beloved NHS is on its knees.I had to request the Neurologist appt for my son after a physio mentioned neuro functional disorder, something that was only described as a functional disorder to me and in the letter following an appointment with a Paeds Consultant. At the time he wasn't displaying symptoms as they had eased off but I showed her a video of the leg spasms and read some of my endless diary notes. Her response check out neurosymptoms.org on pain management, no follow up.
Nearly 6 months letter I was handed a letter during a GP appointment after trying to get an appointment to see specialist again about FND and yes you guessed it - research it yourself.
I hope a lot of FND group members have listened to the podcasts, especially the newly diagnosed ones as there is some great advice out there and they are examples of some profesdionals really passionate about help people living with FND,
I am really tempted to write to one of the partners of my surgery to suggest listening to them if they have any downtime and maybe send them the copy of the child friendly resources or a link and perhaps the referrals may get done at the onset.
The real important message was: FND IS TREATABLE but not one size fits all. Which makes sense as there are such an array of FND symptoms.
Good diagnosis and education is important as well as being trained how to self-manage.
Specialists should help patients identify the top symptoms first, what is the patient struggling with and what is getting in the way of them living their life the way they want. Then if they are ready emotionally, work with them with other specialists (multi-disciplinary Team) to manage/overcome their symptoms.
FND should be treated as a category of human illness and provided the same resources as other dehabilitating conditions with a focus on rehabilitation.
I was disappointed (but not surprised) that they didn't mention the Genetic Alliance UK good diagnosis guide. It's *really* good and could prevent them from making 'category error' or confirmation bias diagnoses. They also need to realise that referring to p/w FND as 'tiresome' (Prof Stone) or telling them to 'google it' when they are diagnosed is not likely to empower patients to better health or encourage them to take up the panel members kind offer to walk the therapeutic journey with them.
It baffles me that they don't seem to be aware that 'no one size fits all' re therapeutic approaches applies to far, far more conditions and symptoms than those experienced by people with FND. Yes, it's an important realisation but doesn't make FND different.
And I still can't understand how Perez et al can claim that patients precipitate/perpetuate their FND symptoms via maladaptive cognition, behaviour etc etc unless they were with them at onset and able to observe those behaviours etc. And I doubt that could possibly apply to the people who developed FND symptoms downstream of taking and/or withdrawing from antidepressants.
Totally agree that provision is hugely important for p/w FND and I think that's the view taken by the authors of the FND is a Feminist Issue paper. I don't visit Stone's site very often but did check on his information re PPPD (no idea why he thinks that's 'functional' aka 'hysteria') and if the rest of the info is as poor as that is, he could consider paying us experts to empower him to empower the next people in line.
I wonder what would happen if they took FND out of DSM. As far as I can tell people with same sex attraction (who escaped DSM a while back, but not far back enough) didn't suffer as a result of no longer being labelled as mentally ill. Maybe some of the 'appalling contempt' from doctors (and all the horrible and unnecessary stigma associated with FND) would stop.
I did notice another post relating to genetics and DNA testing but thinking would have to pay privately.I thought FND was no longer associated with "hysteria" as more understanding and research has been done, therefore should it not be removed from the DSM (and yes, I had to google it manual.
Especially as it seems some medical professionals still use it as a reference. I guess it needs a lot of updating with reference to other illnesses.
Yes, it's good that they're catching up with what us patients have been saying for years eg 'think genetics'. I have familial Mal de Debarquement Syndrome (MdDS) so am very interested in genetics around that and migraine. Meanwhile Prof Stone and some of his pals (mostly men) seems to be more interested in shoving everyone with MdDS (who are mostly women) under the FND brolly and hence into DSM. All without providing a validated and published diagnostic criteria for FND that would include people with MdDS, even when we are in remission (as I am). Not a good look for them, eh?
Unfortunately 'functional' still means 'hysterical' and it is used as a codeword/euphemism because it infers one meaning to patients and another to our caring doctors which means we can't have nice things like the Patients as Partners era of medicine. dx.doi.org/10.1136/jnnp-201...
I'd have a lot more respect for Prof Stone if, instead of telling people that the opposite of 'functional' is 'structural' (which it isn't) he'd put papers like this on his site.
I had to google that and looks like a specific symptom that I haven't heard of associated with FND (whereas others are). Guessing as the "familial" refers to "family" other members of your family have experienced it too.I heard that if structural (first thing checked, broken bones etc) is ruled out its got to be .... (brain freeze - psychological?) but not necessary saying its the opposite.
Good to hear your in remission, guessing you have had it more than a few months.
I think the word was non-organic.I see what you mean, it seems that not all neurologists are singing from the same sheet and I guess that applies to other medical professionals too.
That also explained why my letter following my son' Paeds Consultation said Functional Disorder and the GP's letter (which physio saw) said Functional Neurological Disorder, aka FND. I never really found out about FND till nearly 6 mths later (arghh).
Thanks for googling, Lady4, and yes, one of my close female relatives also had MdDS symptoms (with added nausea, which I don't get, thank heavens) for a couple of years and although familial MdDS is considered to be 'very rare' there are more cases of it reported now, as it becomes part of our collective knowledge. Hereditary MdDS is also a thing and there is a woman in the UK who has MdDS who has 3 daughters with it, all motion triggered (and motion mediated, in that we usually feel relief from symptoms when we're re-exposed to passive motion eg when we're in a car or on a train or ship).
I had MdDS on and off since 2003 and did not expect to get remission again after a very long (over 5 years) episode so I consider myself to be very lucky, especially because I think this one will stick I disagree with Profs Stone and Staab that everyone with MdDS has FND for multiple reasons, not least because I have yet to see a validated and published set of FND diagnostic criteria that would include people with MdDS.
Really tired now but yes, again, we need to unpack the whole 'if there's no obvious structural damage it must be psychiatric' deal.
At the last FNDS conference, John Stone stated that FND should not be in the DSM. His psychiatrist colleagues disagreed because they said they would then not have a means of charging their time. They were pretty smug about having been able to keep Alzheimer's in there too...
Thank you, Van604, I did not know that and I agree with Prof Stone. FND should not be in DSM. As for those smug psychiatrists/trick cyclists, they are clearly putting their interests ahead of those of their patients and that is not healthy. FND got coded partly so that drs could be paid for making the dx so whether it's in DSM or not is irrelevant when it comes to billing.
I wonder which bright spark came up with the idea of using the term 'functional' to aid diagnostic acceptance because it doesn't overtly point to a mental health disorder diagnosis? Medical gaslighting, or what??
Alzheimer's killed my beloved Mum and all the people I know who are researching it (including a psychiatrist) are aware that the paucity of funding for vital research is partly the result of it being viewed as a mental health disorder.
I think the way it works in the US is that psychiatrists can only use codes from the DSM for billing - that's why they want to keep as many disorders in there as possible, even those like Alzheimer's that they concede are neurological. That's what they appeared to be saying. So that's why they're fighting to keep FND classified as psychiatric.
Hmmm, I thought they could use ICD codes. Might be worth asking the FND Society about that, if you have enough spoons. Meanwhile I am not OK with them vacuuming up all the 'dizzy' people and people with brain fog to justify their claim that 16% of referrals to neurology are for FND. Triple PD (3PD - which is thought to be a 'useful conceptual framework') might be deemed to be a FND subtype by them but it isn't a psychiatric condition so that looks like another 'category error' to me.
There was some discussion about the over diagnosis of 3pd and the diagnostic overshadowing that goes with it during the Migraine World Summit several years ago and the general consensus amongst patients and professionals was that they already have a poorly served and highly stigmatised patient population (IE people with FND) and adding to it wasn't likely to help either group of patients.
Also I've been looking into FND education and saw details of a two day course which looked OK to start with until I realised they were using actors instead of patients and that the course participants could choose how difficult the encounter was. If us patients had the same choice, things might be different, but far, far too many 'dustbin' FND diagnoses are being given for my liking. If they used patients in the training, that might stop.
And they really need to address the fact that people with FND are being treated with scorn in medical settings and are experiencing trauma as a result. I doubt that happens to people with Alzheimer's because if it did there would be an outcry. Yet it seems to be acceptable in the FND world.
Van604 I can't thank you enough for mentioning Alzheimer's in your reply to me. DSM 5 have recently opened a public consultation regarding the diagnostic process (which is very different in the States to how it is in the UK eg re genetic testing) and the cognitive impairments associated with this condition. It is all a bit technical for me as a lay person but I hope to respond regarding my late Mum's experiences.
Re FND and DSM codes, there aren't any DSM codes and the psychs can use the ICD codes for billing as from 2015 IE long before the most recent FND Society meeting.
My mum had Alzheimer's too - in the UK we were never given the impression that the doctors saw it as anything but neurological. It's very different in N America though - I've lived in both. Freud was and still is far more influential there.
Yes I really do find it disingenuous when neurologists fail to make patients aware that FND is classified as a mental health disorder (DSM V) and it isn't in the neurological section of ICD 11. It leaves patients looking stupid when discussing it with other medical professionals when they've been left with the impression that medicine sees their disorder as physical when in fact it doesn't. This isn't empowering to people with FND. It's no answer to say 'oh well the split between mental and physical health isn't sensible' - we're the ones left to navigate the system in its current state. And I worry that when positive rule in signs are discussed, this usually goes hand in hand with how much money is saved not carrying out further investigations. It's important to rule out other things. I find neurosymptoms.org unhelpful - everything has been sucked in as a diagnostic sign - the only symptom of FND not listed is breathing!
Oh bless you, Crypto127, your comment about breathing gave me a much needed chuckle
And you nailed it re the Perez paper. The split between mental and physical health isn't sensible, so where's the wisdom of bunging people with FND into DSM? (please see my reply to Lady4 ffi re more of my thoughts on that).
This might sound harsh but they are the ones that look stupid, to me. When it was available on his self help site I read Stone's bare essentials paper and surmised that using the term 'functional' (which we now know means 'hysteria') is deliberately deceptive dumbing down double speak. Apparently it was chosen partly because it's 'easily used with patients' - yeah, right
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