UK members, what do you think of this... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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UK members, what do you think of this article about FND for generalists (GPs) and the responses to it?

210272
210272

doi.org/10.1136/bmj.m3745

(If the link doesn't work, search for 'Recognising+Explaining FND Stone et al BMJ' and the article should come up.)

45 Replies
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I just read the abstract because I don't want to pay for the full article, but it sounds promising to me.

210272
210272 in reply to Van604

Your neuro or GP may be willing to send you the full article, with references :) I feel it puts a lot of the burden of explaining FND onto our GPs, some of whom may find it difficult to understand themselves. Also the information they get about how and when to diagnose FND (which is now considered to be 'a core neuropsychiatric disorder') is very different from that which is written for neurologists.

Is there a way to read the full artricle without paying for a membership? From what i read it sounds great 😄

210272
210272 in reply to NicStevens

Your neuro or GP should be able to provide you with the full article without you having to pay for it :)

Here's the full article.

bmj.com/content/371/bmj.m37...

210272
210272 in reply to butterfly3000

Thanks for that, butterfly3000 :)

It's an interesting read is there anyway I can read the rest without paying please , my doctor don't understand FND when I see him he say (oh it's probably something to do with this thing you've got ) x

It's an interesting article and the responses are very informative, questioning the possibility of misdiagnosis due to a clinicians interpretation of FND and drug interactions on an individual which may have exasperated their symptoms leading to FND being diagnosed, how often is the this taken into account?

210272
210272 in reply to butterfly3000

I found some of the responses from clinicians borderline insulting in the way they were worded and their attitude. 'Emotional investment'?? Um, what about pragmatic necessity? I agree that drug interactions can cloud the picture but since FND is not a dx of exclusion and can be made alongside any other condition or set of symptoms, I don't see how anyone can avoid this diagnosis.

Personally I like the World Health Organisations's take on the coding of pain which is that it's not appropriate to give someone a mental health diagnosis simply because no cause has been found for their pain. Maybe some of our generalists would agree with that, especially since they know that our mental health services are underfunded and overwhelmed already.

Van604
Van604 in reply to 210272

I think the "emotional investment" thing comes from the traditional theory of conversion disorder, whereby the patient receives primary/secondary gains from being ill. I find it insulting too, not to mention dangerous because it affects how you are treated. I was referred to a psychologist, and he said it was Freudian nonsense and said I had suffered nothing but losses from my illness. He was convinced my condition isn't psychological (which is ironic). Thank heavens some medical professionals are not totally brainwashed!

210272
210272 in reply to Van604

Yes, medical gaslighting by brainwashed drs is rife - and horrible (I see the results of it a lot in the rare conditions space, in the UK and elsewhere). And yet they may not even realise they have been brainwashed since they are not given the same diagnostic guidelines (re FND) that neurologists get. Plus they now have to deal with patients who know that the word 'functional' has been used as code to mean one thing to patients and another thing to doctors for years and are not happy about this hoodwinking process and may not be convinced that it is over.

Van604
Van604 in reply to 210272

Did you watch Thursday's FND society lecture? They are trying to come to an agreement on what to call non-epileptic seizures. Let's just say it looks like an impossible task because they are all so entrenched in their positions. Jon Stone pointed out that whatever they call it, doctors will still keep their own (diverging and erroneous) beliefs about what it is. It was a huge eye opener for me - some of these people really seem to only be concerned with pushing their own agenda, regardless of the effect on patients.

Van604
Van604 in reply to Van604

By the way, I don't know Jon Stone, never met him. I realise I'm looking like a bit of a cheerleader for him, but he seems to be one of the few doctors who are talking some kind of sense. Especially since I've spent the last 2 years being gaslighted by a neuropsych!

That's a good point, I was diagnosed on the basis that my pain is a mental health disorder as I'm allergic to certain medications. Still trying to get my head round that one!

210272
210272 in reply to butterfly3000

Hmmm, I'd challenge a FND diagnosis made on that basis since that doesn't seem to fit the 'rationale' mentioned in this article (right at the end) and I don't think that being allergic to certain medications qualifies as a mental health disorder. What about people who are allergic to certain foods - would they be told they had a mental health disorder? Somehow I doubt it.

Meanwhile it bothers me that, re FND, our GPs don't have a robust set of internationally recognised diagnostic criteria to refer to, especially now that FND is considered to be a core neuropsychiatric disorder. Without these, FND starts to look like an 'opinion' rather than a diagnosis. I also find it questionable that the article asks GPs what their 'attitude' is about patients with FND - would they ask a similar question about GPs' attitudes to someone with migraine or cancer or a broken limb or bi-polar? Actually, the more I read it, the more questions I have about it and the two GPs I've spoken to about it so far feel the same way.

Van604
Van604 in reply to 210272

I think they are questioning the GPs' attitudes toward FND patients because a lot of them still hold old-fashioned views on the disorder. Jon Stone previously published a paper on doctors' attitudes toward FND, and the results were pretty shocking. Quite a few said they wanted to quit their jobs because of these patients! If you believe someone is a fake who's attention seeking, you are not going to have any empathy or patience for them. I believe Jon Stone is one of the good guys. He's working extremely hard to change attitudes toward FND and win some empathy and respect for us. I'm really grateful for that.

210272
210272 in reply to Van604

Respect for anyone with a neurological condition (whether it's deemed to be neuropsychiatric, as FND is now, or not) would be very welcome :) Meanwhile one of the problems I have with checking the attitudes of GPs is that they've linked it to continuing medical education credits so there's nothing to stop them saying they are OK with patients who have an FND diagnosis when, in reality, they are not. Personally I don't think many GPs have sufficient training or support around managing patients with neurological conditions, which creates a huge burden on them and I can understand why that, rather than the patients, would make them want to quit or go into another area of medicine.

I'm trying to challenge this at the moment. As I won't take pain relief that causes anaphylaxis my reaction is pain is deemed unreasonable. I've managed to get some things removed as the general population suffer the same issues and aren't deemed to have a neurological disorder.

It's good you have a G.P to talk to, mine have no knowledge on the condition.

I've just been told to read the sites as adviced and seek counselling.

210272
210272 in reply to butterfly3000

The lack of good information, advice and guidance about this concerns me a lot, butterfly3000. My GP doesn't think I have FND (and neither do I) but she does understand my concerns about this diagnosis. Hope you can find the answers you need and get help with managing your pain without having to use medications that may harm you.

I'm on the right track now, Thanks

I found a hospital that has a specialist FND clinic and demanded some pain management. They kindly listened and found a neurologist to help, who told me I didn't have FND and was totally shocked NHS services were telling people to repeatedly read the recommend sites as though it was a form of treatment.

(I was actually told I wasn't reading the recommend websites enough, this was the reason I wasn't getting better, I had to truly believe in FND as it was the first step to being cured!!)

My care has now been taken over by this hospital as they were so appalled, and needless to say I won't be treated for FND but the condition I have while I challenge the diagnosis and removal of FND on my medical record.

I actually find the article shocking that they've added more websites to be read. You'd never tell someone with cancer to go away and read loads of stuff about cancer on the net or any other condition for that matter. I actually find it very harmful and question the reason behind it.

I was told to go and read up about dystonia which is a muscle movement disorder caused by a cavernoma...now having done the work that should have been done by neurology...checked things out with my pharmacy in respect of the drugs being used then thinking about the care plan the neurologist has me on I then went and arranged a discussion with my GP who having checked my research then wrote up an new agreed care plan which I have been running with for a number of years now ...then when all this work was done I go to the dystonia clinic the neurologist writes everything up and signs it off as if its his workNow let me just add to this a number of times there have been problems with the drugs prescribed as in my body didnt tolerate them and if there was a life threatening side effect then it would come my way...so back to research etc based on something I had learned on a support group from America ...checked things out with the pharmacist and did a 10 week trial...tried to talk to the neurologist and he laughed me out the room...outcome I made more progress than I would ever dare to dream given the state of me and was the best I had been in years.GP was delighted ....Neurologist sent me to a colleague who diagnosed it all as FND and even when I pointed out to the neurologist that a dystonic event started in the waiting area...rescue meds were attend to and I was cared for by the nursing staff then taken to the room were I was to get an EEG...now at which point did a dystonic event identified and treated with rescue meds stop being a dystonic event and became an FND event and he didnt even have the good grace to be embarrassed he simply said this needs to be downgraded...too what?????

Stage 2 of the complaint said I have no diagnoseable neurological conditions even though I am under the care of a dystonia clinic and a neurosurgeon team and have been for years and so the opinion of FND stays

Sorry to hear this, it doesn't make any sense that they've kept the diagnosis of FND once you've discovered cause of your symptoms and the cheek to claim it was their finding.

Hope you're on the right track now?

The more I read about FND the more I discover that its something you get labelled with if they can't work out what you have in the the hope you go away happy and leave them alone....

Van604
Van604 in reply to butterfly3000

You've hit the nail on the head there. The medical profession needs to get its act together and admit this is something they don't understand, and stop writing us off as hysterical hypochondriacs. I'm quite hopeful, because I'm beginning to see some experts admit this - one told me that they haven't yet invented the scanner that will show what is going on in the brain in FND. We're basically where MS was until the MRI was invented.

butterfly3000
butterfly3000 in reply to Van604

I've posted a couple of links. One showing the full report from Jon Stone in the BMJ and one questioning how the diagnosis of FND is made.

I think diagnosis in the UK is on the rise as some medical professionals don't fully understand how to look for conditions or have the experience so just tell you, you have FND so you go away.

I've never had an MRI, blood tests etc just told I have FND after a 40 min consultation and told to go away!!......

They made the FND diagnosis 10 years!!!!! after living with the condition and it is my belief that the drugs for the care plan are an american care plan that isnt legal in this country but a doctor can prescribe the tablets in exceptional circumstances which is what mine would be .,... however and I do love this bit..... I can go to the shop and buy the drugs I need over the counter and I did for 10 weeks and kept a journal which was typed up and emailed weekly to my medical team to show the success and progress. Now my own GP doctor was so excited he was almost jumping up and down as it meant I didnt have to take the heavy duty addiction causing meds. The Neurologist sent me off to a colleague for a second opinion .... even with all this success etc.... and the colleague has now diagnosed me with FND which has stuck and am trying to get rid of it as it is affecting my access to healthcare.The other thing is that the checks as in baseline checks that should have been done by neurology and werent were done again by my own GP doctor and numerous issues were highlighted and rectified by tablets prescribed so that when I went back to see the Neurologist there was steam coming from the computer he was trying so hard to catch up with the doctors that have done his work and what really makes me sick is the lesser paid regular doctors essentially do the work which is reported back to the Consultant he writes it up on a computer and signs it off as if it was his work....and at times I have been admitted to a ward were his notes are read and am told he does very extensive notes that are very helpful...yep its just a shame that the work isnt as extensive....

This is truly shocking I hope your able to get it removed from your records. I've also been denied healthcare due to having FND on my records and I really think they need to stop trying to make FND an actual medical thing when it isn't.

the latest in this saga is that I have now written to the ED to explain that dystonia is far more than a reaction to a drug if its not FND as thats the 2 things they will argue with you i directed them to how ED protocol was run in respect of all patients coming into the department with known conditions as in the condition would be made stable then at that point there would be a chat to ask if anything had caused this or does the patient know of anything that may have caused this. When I am taken in its a 7 min ambulance with often lights and sirens ....or blues and twos for some reason they are called......so that actually means you are going in as having been triaged by paramedics as threat to life. Now the paramedics use enternox to stabilize you till they can hand you over and that after 10 years of working is the protocol, all of which is now being argued under the FND diagnosis.

I asked if there was anything I could do to help THEM with THEIR problem of having me taken to their hospital which is not of my choice...I offered to go down the road of suicide if that will help....and by that I mean dont bother calling the ambulance! just to be clear...I told them how amazing the ED used to be and about the journal I have kept for 6 years, which came to the ED with me for the doctors to read and in the early days even been assisted by the medical staff to help me and teach me to be as independent as I can. the ED also are responsible for keeping me in full time employment for 3 years longer than Neurology ever thought would be possible and the difference between then and now is simply....what has happened to day to make this flare up do you know? and that simple question is the difference between a gold standard of care and no care at all.

They sent me back a lovely letter which they tell me these points will be picked up with senior management not just on my behalf but on behalf of all patients living with any rare condition and thanked me for writing what must have been a hard letter to write. I did make it clear I dont want to be the cause of any discipline or nasty fall outs BUT...

Anyway its not over yet as am still living with post covid I am now managing to reduce the amount of pain meds for the broken ribs but even a cough or a twist in the wrong place and the ribs remind me they are still there and still hurting and its all good ground for another flare up so I will see what happens when the road is tested again as tested it will be living with chest wall dystonia 2 cracked ribs on one side and a broken rib on the other...watch this space...mean time I await the outcome of the ombudsman to try and get this off my records.

This article also raises some interesting points on how FND is diagnosed.

virology.ws/2020/01/07/tria...

210272
210272 in reply to butterfly3000

Thanks, butterfly3000 - I was looking for that link to post here :) I do wonder if the authors of the BMJ article have forgotten about the 'is it hardware?' paper. And I am still struggling to make sense of parts of that article, eg regarding whether FND is not a diagnosis of exclusion or is not 'just' a diagnosis of exclusion.

Having been through what this diagnosis has put me through I dont even think this should be getting put out as a diagnosis until they have some medical back up to support it. It is clearly a post code lottery right now as in if you live close enough to a clinic that has facilities then you will have a level of care but everyone else is just left with symptoms that frankly are too dangerous to at the very least not be monitored in some way by someone who knows what they are doing with the symptom because lets be honest it doesnt really matter what the label is its the symptoms that you live with in reality not a label...I live with both the symptoms and the label of dystonia but now the label has been changed to FND the symptoms havent changed respiratory distress can still lead to cardiac distress if it isnt attended to quickly enough but now its FND I have to fight to get attended to and by fight I mean the neurology department that put this label on my records ended up having a departmental meeting to discuss my case the outcome of which was a red alert on my records that there is a care plan on record and it must be used...the bullying continues and I just got a lovely reply from another letter to the ED asking them to raise the awareness that rare conditions when they come into the department need to be properly assessed and its just never ending. I should not as a patient living with numerous long term potentially fatal conditions if they are not cared for and monitored be having to fight for the right to live by getting into this FND business its a medical subject and as such I am not trained as I am a patient.

FND is a classed as: "It's not a diagnosis of exclusion" hence anyone can diagnose it and anyone can have it based on a clinicians interpretation of it!

I also posted another link above not sure if you've seen it that discusses this.

Van604
Van604 in reply to butterfly3000

I think it's pretty clear at this point that they don't really know what it is - it could be a whole bunch of different ailments with similar symptoms. That could be what's causing the confusion. There is a limited number of neurological symptoms, and all identified neurological disorders have some of them. Misdiagnosis is extremely common, despite what they tell you. I was diagnosed with Parkinson's at first. I think FND is a wastebasket diagnosis - it's where anything neurological gets thrown when it can't be confirmed as something they already have a name for. I can't trust any doctor who won't admit that.

butterfly3000
butterfly3000 in reply to Van604

I totally agree with you and I fear misdiagnosis in the UK will be on the rise. As this guide is also for people with no experience of taking a patients medical history and acting on the facts.

My diagnosis wasn't made by a GP or neurologist. But someone with no experience of performing a medical exam or understanding of neurological conditions who had been on an NHS training course to diagnose FND and "spot the signs".

In my case it could have been fatal if I didn't seek help from another PCT who had no access to my medical notes stating I needed no medical intervention as I just suffered from FND.

Needless to say I don't! Now in the process of trying to have it removed from my records, as I find it extremely troubling that someone can write in ones records don't offer medical help they have FND they just need counselling!

I still haven't been treated for the condition I went to see this person for as they lack experience in their field thus passed with off with having FND!

Funny you should say this an OT who saw me to do an adjustment to my wheelchair went on a course to be trained in FND I nearly fell out the chair when she told me...we had a chat when I had shown her something which was a pinched nerve but the neurologist is calling it a tremor even though it shows up on MRI scans and assessments going back some 20 years ...it is now added to with age related disc damage etc and I asked her tremor or pinched nerve or FND and it was at that point she told me she had done the training then looked shocked and said that could not be further from FND

I'm truly shocked by all you've been through. Have you informed the Dystonia society of your treatment? I think it'd be good for them to know how people with your condition are being delivered healthcare. Good luck with your complaint with the medical ombudsman, please let me know how you get on? The misdiagnosis of FND and treatment of people with FND or suspected FND really needs highlighting.

Van604
Van604 in reply to butterfly3000

Yes, this happened to me, in Canada. Actually, it was even worse because they put conversion disorder on my chart. After that, even when physical problems (heart/brain/thyroid) actually showed up on scans, they just brushed it off. My neuropsych's response was "well you are pushing 60 you know", as if I should just give up and die. I saw a psychologist for a second opinion and he said he didn't think it was psychological and advised me to move back to England and start again with a clean chart. I've asked for a referral to Mark Edwards because at least he's a neurologist and not obsessed with Freud. I'm hoping this works because I'm running out of options of places to move to!

butterfly3000
butterfly3000 in reply to Van604

Good luck with your referral, hope it all works out for you. Moving from Canada back to the UK is a big step.

Hope you finally get the treatment you need. It's shocking how they totally dismiss real physical symptoms as not being important as its most likely these that are the cause of the symptoms!!

210272
210272 in reply to Van604

Van604 - I don't want to put you off moving to the UK but should mention that FND is a very common diagnosis here (probably because some of the key content providers about it live here). I wouldn't want you in an 'out of the frying pan, into the fire' situation, especially after all you've been through already. Plus they seem to have ditched the Freudian stuff with respect to this diagnosis so finding a neuro who isn't a Freudian may not help, unfortunately.

Van604
Van604 in reply to 210272

Thanks for the heads up, but it's too late - I'm already here! I honestly don't think it can be any worse than what I've been dealing with. Which is a Freudian neuropsychiatrist who believes in primary/secondary gains, who persuaded every other doctor that I'm just looking for attention. So when I had a seizure, they would just ignore me - for hours. He refused to send me for any tests and persuaded other doctors to follow suit on that too. I had to join clinical trials, just to get tested, and when things showed up, his response was "well you are pushing 60 you know", and refused to follow up. It's not just me though - he does this with every patient he sees. A bunch of us have formed a support group, to try to recover from being treated by him! He even refuses to call it FND - insists on "conversion disorder". And he is the undisputed "expert" of that city, even though he's still living in the 19th century! After that experience, being diagnosed with FND would be preferable to me - at least it's seen as neurological.

210272
210272 in reply to Van604

I really hope you get better service here, Van604 :) Yes, FND is seen as neurological but the Perez paper conceptualised it as 'a core neuropsychiatric disorder' and it does seem that few patients are told this, which is worrying. If you get referred to a neuro-psychiatrist here it is worth noting that they are 'self-made' so it would be worth checking their level of training and their understanding about what FND is/isn't.

Yep, I'm also part of a support group of people in recovery from this diagnosis but it's not linked to one specific clinician, for legal reasons. I am so sorry you've been through such hell and hope you can get the answers and support you deserve now. I'm nearly 60 and if someone had that attitude to me I would file a complaint against them and go to the press.

Van604
Van604 in reply to 210272

Thanks - I do appreciate the information and advice. At this point, though, I just don't have the energy to file a complaint. He told me, and my company, that the reason I was ill was because I was "allergic" to my "toxic" manager and that I couldn't work for him any more. So my company ditched me (after 20 years). I filed a human rights complaint but they advised me to give up because they said it would drag on for years and my company would be able to say anything they liked about me and I would have to prove it's not true. I decided to use my energy for trying to find ways to feel better and to find a better doctor. Also, I don't think that doctor is a bad person - I think he really believes all that nonsense and really wants to help his patients. That's what makes it so tragic! I tried for two years to talk some sense into him (another patient tried for nine years), but he's too brainwashed.

210272
210272 in reply to Van604

Oh my days - good for you for trying and I hear you re the brainwashing. Also good for you for still seeing the best in him. My current neuro and GP are both excellent and I wish I could clone them for you but will trust that you will find equally good ones :)

210272
210272 in reply to butterfly3000

butterfly3000 - wow, they actually wrote that in your notes?? That's appalling. Are you in the UK? There's still so much about this BMJ article that I don't understand, which is bugging me because I am reasonably well educated and have good levels of health literacy.

Thanks. If this doesn't work, I'm going to have to go to Italy. My cousin's a doctor there so maybe I'd get treated better if I have someone on the inside!

210272
210272 in reply to Van604

Unfortunately that doesn't always work either ... one of my parents was a general practitioner and that didn't stop me from getting sub optimal treatment in primary care after I got misdiagnosed with FND. Thankfully I get much better care now and also have an excellent neurologist. Wherever you land up I hope things turn out better for you very soon :)

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