What's your favourite/least favourite part of this paper?
Jon Stone's 'Bare essentials' paper - Functional Neurol...
Jon Stone's 'Bare essentials' paper
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210272
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Wait, what? You're here and you haven't read it already?
Wow. It's available via Jon's site.
Um, no ridicule from me, just curiosity. Like your nom de wotsit.
Can you send it to me, please?
DNE92ModeratorFND Hope UK
Are you referring to Chapter 33, in the 5th edition (2017) of Practical Neurology (ed. Biller, J.) entitled "Approach to the patient with functional disorders in the neurology clinic" by Gelauff, J. and Stone, J.?
Can you copy the paper or provide the website info. The references I have found all charge a fee. Thanks.
Please see the next comment 
Here is the link everyone for free.
functionalmovementdisorder....
From a quick review, the document looks well. What is your concern?
Thanks, that's the paper. I am not concerned about the movement disorder part but am just interested in what people here think about the rest of it.
Thank you
Thanks
I’ve just read it and to me I hope all the neurologists, psychiatrists etc I saw in 17 months before getting to Professor Edwards read it and learn from it. It would make such a big difference to being told (don’t know what is wrong, see you in a years time) drugs that side effects were horrendous, you have anxiety and depression I’m sure there are others I’ve forgotten on my journey, I for one was pleased to read this, thank you for posting the link.
I'd much prefer someone to tell me they didn't know than tell me I have a 'conversion disorder'. I'm also unclear as to why you would accept medications from a doctor who wasn't sure what was causing your symptoms.
Having never been ill in 50 years, I was desperate for answers, maybe you can accept no answers (good for you) I never realised I was having non epileptic seizures until reaching Professor Edwards, while having these seizures and stopping breathing even for a short time was extremely frightening I was just informed we don’t think you will die as when you become unconscious you will automatically begin breathing again. The drugs I was given were obviously 🙄 in the hope of helping me as I was desperate for help, the fact they didn’t help does not mean I shouldn’t have tried them. If you are unclear why I needed answers to my many various symptoms that did not show up under any tests, mri, ct scans etc that I was given only to be told again and again we are unable to find anything wrong with you, maybe you are just happy to have unexplained symptoms. For me FND diagnosis explained my symptoms and why nothing was showing up as physically wrong with me. Nearly 6 years on, 1 months rehabilitation in London I’ve improved, maybe not to the extent I hoped for but definitely improved to how I was. I was and always will be happy to have got to Professor Edwards, got my diagnosis, had rehabilitation, I believe I’m one of the lucky ones.
That sounds terrifying!
What was the process of elimination?
I was having blackouts and seizures, and was diagnosed with FND/ CD. But I have the correct diagnosis of Orthostatic Hypotension, I was diagnosed by a cardiologist.
It was also causing memory loss, balance issues and weakness, because I was having chronic low oxygen to my brain from all faints.
I've also found to have elevated inter cranial pressure, that can cause neurological symptoms.
The process of elimination for me was no history of illness, nothing in my past abuse etc, I didn’t have depression and anxiety when I started this journey, no family member had any illness except old age, nothing traumatic in my past, no divorces in my family, all tests came back negative. When I finally got to Professor Edwards, got my diagnosis, went on FND website, I was relieved to see out of the symptoms I had over the previous 17 months they were all listed there. I’d never had a stroke, Parkinson’s, migraine, although I’d had all symptoms that looked like these illnesses. The relief for me was overwhelming, I had my answer, for me I’m happy with my diagnosis of FND, with rehabilitation for FND symptoms, I’ve improved my life, still long way to go but I’m on that road now.
What I mean is, what tests did you get to eliminate other conditions?
Also, is there a criteria for diagnosing FND in terms of- gold standard tests to eliminate?
• in reply tostripybutterfly
So many rare conditions can cause neurological symptoms. Fatigue caused by a systemic disease can cause neuro symptoms. As you know PoTS can cause neuro symptoms and often goes undiagnosed, as do rheumatic diseases such as Sjögren’s, Lupus and Hughes. Endocrine diseases such as Addisons and Hyperparathyroidism cause neuro symptoms and so can chronic kidney disease. Also drug allergies to medications such as Tramadol can cause neuro symptoms. These are just a few of the conditions and drug reactions etc that can cause the many neuro symptoms described on Professor Stone’s FND website.
Diseases such as multiple myeloma and Amyloidosis can start with neuro symptoms but when they finally become fatal this would be recorded as an unrelated death from cancer I suspect?
The point I’m making is that so many things that aren’t “functional” but aren’t related to a primary neurological process either, can present neurologically. This is why we are told that FND is not a diagnosis of exclusion but is a diagnosis made by tests such as Hoover’s Sign and tremor entrainment. In my case I made it clear to my neurologist that I have read up and know about these tests and have serious concerns about them being used on me in the recent past, unexplained, for this purpose of differentiating between FND and malingering/ falsification.
She agreed to drop the “functional” premise and just stick to the salient facts. For me these are do I have Parkinson’s or benign essential tremor on top of my rare autoimmune diseases? - that’s all I want to know from her. This is her job to work out - not to stray into areas outside her neurologist’s remit.
We are all far too complex and uniquely organic to be compared to cars and mobile phones or to be (mis)diagnosed with an unprovable and ethically questionable condition using only a couple of very basic tests to confirm.
I got diagnosed very quickly with the rare condition I've got so I am one of the lucky ones, for sure. For me, getting the 'functional' label several years later was a major setback but I'm back on track now and doing well. Non-epileptic seizures have been observed in people with migraine so it might be worth asking about that. Meanwhile there are neurological conditions that don't show up on tests, as Jon Stone says in his 'bare essentials' paper. Yet he advises neurologists that MRIs may be necessary to 'prove' the 'functional' dx to patients and their GPs and I still can't figure out why.
I'm so happy you've had some improvement via rehab and hope it continues
NES can also be caused by cardiology reasons too- in my case it was from low blood pressure. Not getting enough oxygen to my brain was causing blackouts and seizure types movements.
It's mentioned here
jnnp.bmj.com/content/70/sup...
So why do they/you think it's psychogenic?
I've been 'un-diagnosed' now. I've not had FND removed from my records yet, that's gonna be a long road!
I have a very different reading of it, partly because I was misdiagnosed with 'FND' and partly because of the advice Jon Stone gives about disregarding the information from the physical records on the purely speculative grounds that it may be wrong.
I was also misdiagnosed but never actually told it was FND, they just hinted and the first neuro even wrote I’m a “conundrum with normal tests”! I eventually had the right tests and was diagnosed with the correct condition. Then, when I struggled with the treatments because of serious side effects (chest infections they scarred my lungs), a neuro registrar wrote a letter hinting it was functional overlay. 4 days after seeing neuro reg, I was in intensive care with my neurological illness. Next time, I’m insisting I see my neuro and not her reg. JS’s dangerous info is clearly filtering through to new and young doctors. If he’d assessed me properly that day, this could have been prevented.
Hi I’ve just read the paper and I’m even more confused! I had a MS diagnosis for 20 years . Seen a new consultant and diagnosed with FND. The one thing reading this has done for me is to disagree with the FND diagnosis “ one that I was open to “ It doesn’t describe one bit of me
'Semantics scholar'? Does that apply to Jon Stone?
I’m shocked by this, essentially it’s “everything could be FND”. I note his comments even on brittle asthma with “asthma” in quotation marks! I do not believe that 50% of neurology patients have some kind of FND but he clearly does and states that 50% have functional symptoms even if it is not their main problem.
Sucks, eh? Howabout his stuff about being surprised who gets better and who doesn't. Doesn't impress me.
Been thinking about this and the paper feels ambiguous in many respects since it seems to suggest that the more 'functional' symptoms someone has the more likely it is that their main symptom is 'functional'. But at no point does he explain what he means by the term 'functional' in these contexts.
The purely speculative part about healthy organs being removed really bothers me because the inference is either that sloppy surgeons are taking out healthy organs (which seems unlikely) or that patients are insisting on un-necessary operations. Yes, I have been told of a few incidences of that happening but in either case, all the neurologists need to do is check back through the notes before making any assumptions based on what they've read in Stone's paper.
It's escalated to 2 out of 3 recently. That's what happens when the content providers set up diagnoses of non exclusion. Go figure
DNE92ModeratorFND Hope UK
Thanks for the link. I find it very worrying that a paper that sets out to debunk myths feels the need to set out markers for factitious and malingering for financial gain. That aspect of the paper gets much more attention in the 2017 paper I referred to (this paper was published in 2009). Where is the academic rigour - in both papers- to quantify factitious and malingering and who is the judge.
• in reply toDNE92
Chipping in my penny’s worth too. As well as these two prof Jon Stone papers, there are other papers that set out how neurologists go about the thorny issue of communicating to their patients that they have conversion disorders. This 2009 paper was particularly illuminating to me: ncbi.nlm.nih.gov/pmc/articl... Patient Education and Counseling
E L S E V I E R
“Limits to truth-telling: Neurologists’ communication in conversion disorder”
So having read this and the Stone papers, prior to my neurology review next week, I find myself wondering why neurologists are not just sticking to what seems to me to be their brief? That is diagnosing or excluding neurological diseases and neuro inflammation.
If a neurologist is confident that a patient doesn’t have these then why on Earth do they need to get entangled in anything else outside of their remit or training? Surely the rest is up to the patient and their GP of other specialists to determine?
However, rather than sticking to their specialist brief of diagnosing or excluding primary biomedical neurological disorders such as MS, MND and PD or SFN or neuro inflammatory overlap such as CNS Lupus, CNS Sjögren’s, CIDP, GBS, MdDS, MG etc, some neurologists seem to have strayed/ crossed over into diagnosing psychological disorders or conversion disorders and even trying to distinguish between conversion disorders and malingering for benefit seeking etc?
The thing that scares me most about this is the experience that Crashdoll has described here - because including “functional” as one of the three categories that are now viewed as a neurologist’s diagnostic remit, is potentially dangerous.
For example my first encounter with “functional” was a left sided hemiparesis which my first neurologist diagnosed as “functional”. Given his fuse box explanation as a response to trauma, I was ready to buy this explanation as plausible. Shortly before the hemiparesis i had been in hospital 3 times over a five month period with pancreatitis, cholecystitis and a post op wound sepsis - also had pneumonia in between. Why wouldn’t my fuse box be short circuiting?!
Later on, relocated, I learned from hard experience the left sided palsy was actually a side effect of Tramadol - which I’d been given for pain when in hospital and later prescribed by a GP.
Meanwhile I relocated, was rediagnosed with a rare rheumatic disease. But “functional” stayed on my notes along with purpuric scurvy (vasculitis from a drug allergy). After obtaining copies of notes and letters I was able to get the Scurvy removed/ redacted. But the “functional” diagnosis stuck and it’s still there looming large and getting in the way of serious discussion about serious symptoms.
So, say, if I’m injured in a road traffic accident now and a hospital doctor wants to give me something for pain, but I’m not able to be coherent or speak up for myself - then nowhere does it say on my hospital records that Tramadol causes me to have stroke-like turns.
And I can tell my neurologist or GPs this fact until I’m blue in the face - but until ”functional“ is redacted and replaced with adverse drug reaction to Tramadol then it’s up to me to be compos mentos enough to inform anyone charged with my treatment myself.
This is just one of many examples i can cite as to why “functional” has been an inappropriate and unethical diagnosis for me personally. The pack of cards effect that this “functional” premise can lead to is endless.
Also I would argue that determining whether neuro symptoms belong to either falsification/ malingering or possible conversion disorders should sit well outside of the remit of a neurologist. There are plenty of DWP officials hunting down potential “malingerers” after all. And diagnosing Munchausen’s is surely the preserve of psychiatrists?
The possibility, even likelihood, of the underlying cause of supposedly non biomedical neurological symptoms that show positive for FND (using Hoover’s Sign etc) , in fact turning out to be due to rare systemic diseases such as Amyloidosis, Lupus, Sjögren’s or Vasculitis or else to belong to serious mental health conditions - surely makes FND a diagnosis that no neurologist worth their salt should be willing to make? These aren’t their specialist areas so they can’t diagnose them. And the chances of misdiagnosis is surprisingly high whatever JS’s in-house stats suggest.
I realise it’s upsetting to those who accept and have found their FND diagnosis a positive and useful one, when people like me, who have been misdiagnosed or who have other underlying biomedical disorders “seek to deny the existence of FND”. But what you are saying, in effect, is that your diagnosis of a “functional” disorder makes the collateral damage for the misdiagnosed just that, ie we are just the unfortunate collateral damage?
And, despite being hounded off this community in the past for expressing my scepticism, I feel I can be here and say this as one who is still classed by their neurologist as having “functional” overlay/ FND despite all signs showing very active, untreated rare systemic disease. Hopefully this will change next week but bearing the papers above in mind, I’m not optimistic.
210272• in reply to
Agreed. And since someone mentioned semantics I'll throw in a question about semiotics: What might Jon be trying to infer in the part of his 'bare essentials' paper where he writes this?
'Physical aids/wheelchairs
These can be an obstacle to recovery but also improve independence and morale. Explain that the same arguments apply in multiple sclerosis too and discuss openly with the patient.
Disability benefits
As with physical aids they can be an obstacle to recovery but disability should be the criterion not the diagnosis.'
Are we looking at another whole level of ATOS miracles for people who have symptoms but don't have a disease?
• in reply to210272
Heck I hope not - it’s quite hard enough trying to get taken seriously for PIP for biomedical conditions we can evidence - with or without aids. Let alone ones we can’t even evidence. 🙄🤷🏼♀️. At least mental health is finally on the map but progressive autoimmune diseases such as mine and MS are all too often turned down still, even with the variable nature of these now acknowledged.
I’d like anyone researching FND type symptoms to have experienced the discrimination and torture of going through a PIP claim as part of their research. Mind you they would probably be awarded it with flying colours because they would be well enough to have their wits about them, unlike many of us living with invisible chronic conditions.
210272• in reply to
The PIP process nearly finished me. I know they have made improvements though so hope it's easier for you.
• in reply to210272
It nearly finished me off too. I’m only trying again because I’m pretty much toilet bound each morning due to my biomedical conditions and too fatigued by afternoon to do more than a few hours in my work place. I’ve had to quit a PhD place and am increasingly suffering from secondary mental health problems due to medical PTSD induced by a catalogue of misdiagnoses’s and 3 neurologists playing whispers.
I’m also having to run my healthcare like a full time job now because my GP practice has turned into Fort Knox.
This is a nightmare for anyone with a chronic illness, let alone a rare one or a diagnosis of FND. I no longer have anyone medical fighting my corner for my multi fold complex biomedical health conditions, which include lip skin cancer and planned dental extractions, Raynaud’s and small fibre neuropathy everywhere and fecal incontinence - apart from me!
210272• in reply to
It's so difficult, isn't it? Under the rare conditions strategy you're meant to get a designated care co-ordinator, apparently. I hope you get PIP.
eviedotty• in reply to
i can totally relate to what you are saying...I have 3 lesions in my brain called cavernomas...best described as aneurysms baby cousin as it is very similar but belongs to the smaller blood vessels in the brain called capillaries. All have bled or been symptomatic at some point and to cut the story short the damage from the bleed in the basal ganglia has caused dystonia and this got really serious when it affected my respiratory muscles causing respiratory distress which then goes on to cause cardiac distress and a high risk of a heart attack that you wont come back from...now to be fair there were drugs after drugs all baseline drugs used for dystonia that gave me a poor outcome...life threatening side effects. I found an American Care plan for this disorder and I attempted to discuss this with my neurologists...he laughed me out the room and made me feel like an idiot...meantime my new care plan was to call an ambulance and this usually means the respiratory muscles have gone down so straight to Resus...I have been bagged, intubated and on 2 occasions spent the night in HDU and that was beside the arrest team calling my family in to say their goodbyes as the arrest team were having problems getting the respiratory muscles to unlock from spasm...fast forward the story...having spoke to Neuro team and nothing to offer...then spoke to my own GP ...if Neuro cant help then it is unlikely that GP services can help...so after 3 weeks in hospital purely for the purpose of Neurology coming up with something as this medical Consultant said...and I quote!...nonsense no such thing as nothing else can be done...I went home with a drug that had been red flagged to me already. My heart rate during an attack or episode can go upwards of 166 and this drug had the side effect of putting an already high heart rate even higher so for 2 days my own GP stalked me on the phone to..DO NOT TOUCH THIS DRUG UNDER ANY CIRCUMSTANCES would cover it. Now nothing to lose and everything to gain I had done my research...spoken to my pharmacist and decided on the back of this to put myself on the drug which just by the way can be bought over the counter! 12 weeks in and 100% success. In america if you go to the ER with a sever dystonic event they give you benadryl and if you dont respond to this you are deemed to not have dystonia and further tests are instructed.
Now some 5 months down the road on this care plan there has been a few bumps in the road 2 majors which I desperately felt I needed some medical support with...the first time I felt I couldnt trust a doctor who would laugh at something that works and is baseline in a country the size of america so I put myself to bed with pain meds and after a week the result was more than I dared to dream...in short my muscles have been in spasm for so many years at the care of Neurology that they no longer worked...they changed my physical posture and started to go deeper hence the respiratory muscles etc...moving forward the second major bump and I really felt out my depth as it involved seizure type stuff with the full on bowel bladder the works...so when these seizure type events changed I needed help and so I asked. Off to see a Neuro with an interest in FND the outcome of the appointment diagnosed with FND but I am allowed to call it dystonia???...moving on again am home beside myself with distress and pain from the injury that happened at the appointment so again over a week in bed with pain meds and now my head is clear I can think so I read everything I can get my hands on and listen to the seminars on Utube and still am not convinced. So I take my own medical record back to the initial assault that started every thing off and I put myself through the physical exam that the first ever physio would do...exam..then treatment ..repeat the exam to check on progress...to my utter shock and surprise the symptoms are there and I can make them go away and I can bring them back...now to medical evidence...there is an MRI scan with report, a physiotherapist report all stating that I have pinched nerves with age related wear and tear on the neck vertebrae area...now am stuck with a diagnosis of FND and no help offered as there is none available...however that also is untrue as there is a physio program I did 20 plus years ago and I have now gone back to that program and low and behold progress is already being made...so sorry am not sold on the whole FND diagnosis process which for me was to be videoed in a state of distress caused by a major trigger for the dystonia and it had progressed so far down the road I had to take rescue meds which eventually did work. I have lived for 20 plus years with this and been to some pretty dark places but hand on heart never not even once have I ever felt fear from these events. I have never felt any more than am safe because am in safe hands but in that clinic appointment I was terrified at how far these doctors would allow this to go...my son told the staff if we were at home he would be calling an ambulance now and one member of staff told him he knew his mums condition and if he felt an ambulance was needed then dont listen to the doctors telling him I was fine and to go ahead and call the ambulance... thats my one and only appointment leading to the diagnosis and ow I dont even know what happens next...but to finnish on a good note I am doing well but only because I am not listening to the doctors who gave me no hope..
Ok, so this part makes no sense.
"Misdiagnosis for ‘‘conversion symptoms’’ in studies since 1970 has on average been around only 4% at 5 years."
How can this be true, when a) not all neurological conditions were discovered back then and b) how can they be sure that misdiagnosis was recorded?
I was misdiagnosed with 'conversion disorder' and its extremely difficult to get that fixed. And had I not been persistent with going private- I never would have got the correct diagnosis.
And it would have been even worse in the 70s!
Has it ever been proved that someone has had a 'conversion disorder'? Especially since a 'life event' is no longer necessary to make this dx (last time I checked).
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