Today I have just been to a supposed outpatient appointment at a specialist FND clinic. I have been referred there as I have visited my GP twice in the last 2 years and have been in A&E once. I first went to my GP with a swollen foot which got progressively worse. I ended up on crutches and struggled with walking, gradually my left side got weaker and I had a left sided facial droop. Long story short had an emergency MRI and neuro appointment and they couldn't see anything. This was in 2017. Then this year 2019, I woke up with agonising back pain, went to work as normal but was really struggling so called NHS helpline and they told me to come in as it sounded like I could have damaged my spine or it was possible cauda equina syndrome. I went in reluctantly, had another MRI, they examined me and found loss of muscle in a rectal examination and they re-referred me back to neurology for a second time. They mentioned FND, did the most basic examination and ruled out the A&E registrars finding about loss of muscle tone in my rectum. Then said they would make a referral to outpatient (I wasn't fussed and thought I see no point). Anyway December rolls around and I receive a letter for an upcoming neuropsychiatry appointment. I really didn't want to go but my partner persuaded me to. I went to the appointment today and I cannot believe what happened.
For some context I work roughly 40 hrs a week in a high intensity job and have my own case load of roughly 25 clients who have complex problems. The appointment was right in the middle of my day and I had to take time off work to go. I arrived and thought it looked very ward like. I was greeted by 2 mental health nurses which confused me as they said it would be with the neurologist. They asked me if I knew why I was here and I said no, no idea, I presumed it was another outreach appointment. It some what threw me when they said this was a pre-assessment before being admitted into hospital. I immediately said look at me, I'm walking, talking, working 40 hr + weeks, do I look like I need hospital admission for up to 3 weeks!?
They then tried to explain why I was there and started going on about trauma and health anxiety. I explained that I have had no trauma in my childhood. They then used my families medical history against me by implying I had health anxiety. I calmly replied that this was not the case but I was simply answering their question. In response to health anxiety I work within the homelessness sector and have to on a daily basis work with clients who have hep B,C Tuberculosis, HIV and other contagious diseases. I am not at all anxious. At this point it was so uncomfortable and I have never seen two nurses looking so awkward. I reiterated that I wasn't doubting my scans but it is an insult to invite me to a psychiatric ward for 2 visits to the GP and one admission to A&E for organic causes.
Has anyone else had such despicable treatment?
I was livid, mortified and felt extremely patronised by the whole experience.
The fact they were wanting to admit someone who works 40 hrs a week is absurd.
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lovemylife25
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I’m just appalled for you. But as someone who has been battling with doctors who regularly diagnose this so-called condition for about 18 months now - I’m also sadly unsurprised.
There are some here who get terribly upset by me and others saying this, but to me diagnosing “FND” is a human rights violation and your experience only supports this idea.
The worst thing is that once “FND” has been diagnosed it’s terribly hard to get it redacted or to get biomedical conditions taken seriously.
A friend who did have Cauda Equina about 6 years ago was diagnosed and discharged with sciatica for about 3 years until her slipped disc and related loss of sensation suddenly became a medical emergency.
She was flown by air ambulance to a large hospital where a junior dr in A&E pronounced it to be sciatica. He would have sent her home despite her incontinence if she had been fit to travel - but decided to do an MRI “just in case”. The results were shown to a neurosurgeon who realised that they only had about 30 minutes until she became permanently paralysed from the waist down and so she was operated on immediately.
No one ever suggested she had “FND” but just imagine if they had?
Imagine, that would have been so incredibly bad for her.
I had the same sort of back pain when I was in Canada and about to board a flight. I had to drink so much rum and medication just to sit down. I never went to the GP because of fear of being robbed off. I only went to A&E because I was told to. They did another MRI on my spine and the doctor was brilliant! He found the loss of muscle and told me to give the letter to the neurologist.
It’s the neurologists who do such a basic touch your nose **** and the neurologist didn’t even read the letter that was given to me from A&E about the muscle findings. She said that I presented fine so that couldn’t be a problem.
I keep saying that’s fine if my scans are fine then great but I need to find out what is wrong because the first time my blood results were abnormal, now I have loss of muscle in my rectum, but nothing is followed up. So I must be crazy and just desperate to be admitted to hospital for all the attention. Absolutely baffled, my mum was fuming and had no idea how I had ended up under mental health so a swollen foot and agonising back pain.
All I can advise is that you pursue this with everyone and anyone to make sure that you are correctly diagnosed and treated and never have to go through this experience again. Some people just get put right off doctors forever more - which is potentially very harmful too. Doctor avoidance killed my mum prematurely so don’t end up in that club please!
Do take this up as a matter of complaint with your local PALS/ NHS because it’s too important for you and for others who will undoubtedly suffer the same until this terrible fobbing off with conversion disorders is stopped.
PS re despicable treatment I should add that I have at least 3 autoimmune diseases, 2 of which are rare, one degenerative. Due to not being able to get back onto appropriate treatment I see a GP or a hospital consultant on average about twice a week just now and I can only work for a few hours a day at a stretch.
So receiving a diagnosis of “FND overlay” (and implied hypochondria or being disbelieved about my extra symptoms) was just as much of an insult for me as it was for you working a 40 hour week in your stressful job and rarely seeing a doctor.
Basically it’s insulting and unethical having our minds and bodies separated out in this way whoever we are and however much medical help we do or don’t need and however many hours we can or cannot work. I’ve fought this diagnosis very hard for myself and I think I’ve managed to get it taken off the diagnostic menu for now. But I’m very aware of others getting landed and the potential for having very serious conditions overlooked due to “FND”. And it has held me up from getting the right diagnosis from the right doctors for a few years - which has been terribly stressful and a wholly unnecessary, very costly diversion.
123lisa - top tip, remember to check that you get a full copy of the clinical letter following your appointment. I was told I'd got a copy but later found out that the copy my GP got had a whole paragraph that I didn't receive (the 'mental state' report). Initially I was told that this was because patients can't understand the language used (more dumbing down I don't need, especially because I do know what 'copy' should mean) and later the hospital trust changed their story and said I didn't receive that paragraph because it was of 'no therapeutic value'. Hmmm, wonder why they sent it to my (ex) doctor, then??
That was horrifying. I was referred to cbt or cognitive behavioural therapy, not that it was found that relevant..but I would have been shocked in your situation to have been admitted or been unaware of any plan.
I wish I could say I'm surprised but I'm not. I finally got moved to a different neurologist, after 6 years of pointless appointments, and my neuro psychiatrist appointment (I just went along with the neuro psychiatrist because I thought a new pair of ears might help get me some form of treatment as I know I am not converting my trauma). My appointment was in a locked psychiatric ward. Lovely.
I can't 'like' that, Louyse - what an atrocious way to treat people. I've been on psych wards as a visitor and lay-person observer and seen both great and terrible treatment of patients. Sadly, most of it has been terrible.
I also work in the homelessness sector, I don't think they still know what they are doing with fnd, I don't have aniexty but had swine flu and this started after that
I worked 20 plus years in child protection and have been too scared to let my Neurologist know this and definitely didnt let the FND doctor know this...like my last job before I retired involved attempted murder and a shaken baby...and a few years before that I had a case of domestic abuse that involved a gun and a pair of marigolds...no one was harmed in this case we had police support thankfully but the point being I loved my job...was really good at it and now too scared to let the doctors know as they assume mental health were its just not there...my FND is assumed on the back of being hit with a door or by a door that I stood too close to when someone kicked it from the other side...
Oh I've experiences that and totally understand why you don't want to disclose your work. Them: 'Working with teenagers with cancer must have been very stressful and had an impact on your mental health and that has had a knock on impact onto your physical health.' Me: 'Get lost, it was a total privilege and the charity concerned wouldn't have appointed me if they thought it would stress me out or cause me health issues.' This kinda ting really hacks me off.
Other thing worth pointing out is that if our neuro symptoms are a manifestation of trauma caused by our work then surely same must apply to all of them too? So perhaps over diagnosing or misdiagnosing “FND” is a kind of projection on their parts?
Yep, except their jobs are a walk in the park. All they have to do is say 'FND' is the most common disorder we see in neurology. 2 out of 3 patients have it and I think you do to. There is nothing we can do for you since this isn't a neurological disorder so I'm discharging you. Your GP will explain what all this means.' Or they might say 'I love giving the 'FND' diagnosis because it means you'll get better. We use the assessment as treatment because you'll feel better know you know what's wrong with you and can join the support groups.'
However I do agree that GPs may be projecting when they diagnose people with 'stress', 'anxiety' and/or 'depression' without any formal assessment based on agreed criteria and sometimes even without discussing their opinion with their patients. If they then write this on a referral note to neurology, I wonder if that increases the risk of being diagnosed with 'FND'? Apparently around 50% of the diagnosis is made on the basis of referral notes, making the neurologists' job even easier. Money for old rope, if you ask me.
Hmm I’m not so sure. I think it causes many of them quite a lot of stress differentiating between biomedical neuro inflammatory diseases and “functional” disorders. Apart from the fact that MND, MS and PD are all pretty hellish to work with I imagine - there is advice online for neurologists about how to tell patients that they have an F disorder. .
Many patients get angry - me definitely included. And it can’t be much fun diagnosing something associated with Freud’s conversion disorder theory and hysteria - even if the patient is relieved and trots away smiling - the neurologists have the knowledge that they may well not be smiling for long.
I read that most neurologists find it really awkward diagnosing f word disorders. In this research most said that if they misdiagnose someone with PD rather than MS then that’s less awful professionally and emotionally for the doctors than misdiagnosing someone with FND when they turn out to have MS or vice versa. I know someone who was misdiagnosed with MS, then UCTD/ CNS Lupus - now FND. She’s a mess and hasn’t even begun to think about her symptoms as “functional” yet some years on. When I read her sad posts even I find myself being influenced by the expert opinions. Doubt is very pervasive.
But then again my GP says that neurologists are a very strange breed and she hasn’t come across many exceptions. So I still think there’s a good chance they find their job hard and are projecting because they want to have a group of “hysterical” patients who can be improved by physio and CBT rather than only seeing profoundly ill and depressed patients who will only ever deteriorate?
Completely, they gave me the website links for that Neuro symptoms at the end, which I calmly took and then ripped them up. It was the most awkward appointment I’ve ever gone to. I do not rate the neurology department in one of the supposed ‘best neuro hospitals’ in the country. They have handled this extremely badly.
Oh my! So sorry this happened to you. I too have experienced something similar. I have sworn off specialist and hospitals now. The only people worth seeing are the therapy people. Chiropractor, physio,speech etc.
Oh my days, lovemylife25 - that is atrocious. A referral to a psychiatrist on the basis of two visits to a gp and one to A&E?? Especially when you are clearly functioning well, despite your organic health issues. Hats off to you for the work you do and boo to them for trying to stitch you up with a 'trauma' label and, when that didn't work, a 'health anxiety' label. In my experience, as a person with a rare neurological condition and as the friend of people with other rare conditions that are not neurological in origin but may produce neurological symptoms, 'FND' is being over diagnosed and misdiagnosed far too often.
What sickens me is that people who have primary anxiety and trauma, including military veterans, can find it almost impossible to access effective psychiatric support. Whereas those of us who are deemed to have 'hysteria' ('functional' being the rebrand of 'hysteria') get shoved in front of them almost automatically. No wonder we lose trust in the medical profession and that drs who would never dream of gaslighting us into thinking our symptoms are 'functional' get their reputations damaged by association with those who do.
I am completely baffled by the whole thing. I phoned up the centre today to voice my opinion. I asked them typically who is referred to this clinic and it’s normally people who are wheel chair bound and are really struggling in their everyday life. The receptionist was completely stunned when I explained I had been offered an admittance for 3 week stay to ‘make me better’. She said it takes months sometimes years for this. I don’t think she really knew what to say but I specifically requested that no one has any further contact with me and that she could not take my number and that I do not want a so called follow up call from the ward manager on this huge cock up. I want nothing more from the neurology department or this centre and want my file to be closed immediately.
This hospital has already cocked up and sent my personal medical information to a previous address despite me writing a letter and phoning to check and it was received by my ex partner who is not a very nice man.
They have made too many mistakes and I will not trust them again. My original GP was amazing and so was the registrar in A&E.
If I’m honest I haven’t got the energy to fight for any more answers as I am not having any more **** written about me on my medical record.
I will only go and see a doctor when I’m pregnant as my sister had a very rare fatal illness which could affect me and my future children.
I honestly will not be attending the neurology department ever again.
My treatment has been atrocious and I have received no explanations for anything or follow up on REAL findings.
I wish you all luck, I hope you have more success than me!
Just a follow up! I completely agree, I felt like saying to them it’s a pity you don’t offer my clients an appointment to a psychiatrist for 1 A&E visit and 2 visits to a GP when they are crying out for help. This world is completely mad.
They sent your medical letters to an old address, giving private information to your 'nasty' ex?
This can and will get a GDPR breach fine. But it's an 'eventually'.
First step find the Data Officer for that hospital/trust, a polite but strongly worded 'I'm not happy' type complaint (and really lay it on about the address being obsolete and medical privacy). There will be a complaint procedure that will lead (if you disagree with them) eventually to the Data Commissioner.
You could also complain to a Hospital Governor, they might be able to get a repeat prevented.
From Monday you also get the option of talking to your new MP - hopefully you get someone with a known policy on mental health. The idea we are being sent for mental health treatment when we really want physical health treatment, when there are hundreds who need those mental health experts far more than we do, would be a good starting point for the new parliament.
M3rry - very good points, thank you. My MP is the same one I had last time and she's been a big support to me and totally understands how bonkers it is that I could get psych referral really easily but people who need them desperately can't.
Actually it has been my experience that awareness needs to go into the many rare biomedical conditions that are presently being misdiagnosed by neurologists as “FND”. raredisease.org.uk/what-is-...
“1 in 17 people, or almost 6% of the population, will be affected by a rare disease at some point in their lives. This equates to approximately 3.5 million people in the UK and 30 million people across Europe.
In the UK, a single rare disease may affect up to about 30,000 people. The vast majority of rare diseases will affect far fewer than this – some will affect only a handful, or even a single person in the whole of the UK.
80% of rare diseases have a genetic component. Often rare diseases are chronic and life-threatening. Rare diseases can be single gene, multifactorial, chromosomal or non-genetic.”
Yes you are right Twitchytoes, these professional bodies need to take notice and bear in mind the new avenues open to them when diagnosing any illness. Genetics could play a much larger role than it does at present but I find a lot of the time information available will be a pick and choose for dx. What I mean to say is that frequently when a result comes back positive and does not fit the picture it becomes a false positive. That's just one example.
Look at the Belfast Trust were over 3000 patients had to be recalled due to just one consultant neurologist doing his own thing, if those roughly 20% had wrong or unsafe dx.
HOWEVER I STAND BY MY GUNS ALL THESE PEOPLE THROUGHOUT THE SERVICES NEED RETRAINED.
Re-trained? No I don’t think so. Just given a refresher course on medical ethics perhaps and a reminder to stick to diagnosing, monitoring and treating the biomedical neurological diseases that they were originally trained to recognise/ identify.
Ethically they may need refreshers about sticking to their professional remit and a very firm reminder not to diagnose anything and everything that they don’t understand as “FND”. This is a very harmful misdiagnosis for far too many of us.
I agree that we need to talk about 'FND' openly and at every opportunity, Dave_1. Yet a recent meeting in Edinburgh (where the over diagnosis and misdiagnosis of 'FND' was due to be discussed, apparently) was not a patients included event and, as yet, I have been unable to get the transcripts from it. This lack of transparency is not OK since it smacks of a hidden agenda.
Meanwhile Twitchytoes mentioned rare conditions and it's worth noting that many people with rare conditions pick up 'functional'/'psychogenic'/'neurotic'/'conversion disorder'/'hysteria'/'non-organic'/'medically unexplained symptoms' (call it what you will) labels during their diagnostic odysseys. Invariably these labels slow down investigations into the bio-medical causes of these conditions and delay accurate diagnoses and appropriate treatment. Patients suffer as a result and research data gets lost in the mix. This is also not OK.
Let's ask ourselves 'If this is happening with rare conditions, how much more is it happening with common conditions?' before we decide what should be taught at University, other than critical thinking and how to spot dogma/dominant paradigms at 20 paces.
Of course, that way we keep the conversation open. I don't think there is a simple answer or a cure for medical dogma/medical gaslighting but interventions can help in some cases. With regards to 'FND' it might help if it was a diagnosis of exclusion, IE if the diagnosis was only made when all other avenues of enquiry have been applied. However that probably doesn't go far enough since medical science is incomplete so there are still many avenues of enquiry waiting to be found and put on the map. As a great clinician said to someone who has the same rare neurological condition that I have (and let's keep in mind that there are roughly 500 rare neurological conditions) 'We know more about the floor of the ocean than we do about the brain and the rest of the somatic feedback loop (aka central nervous system)'. And, as my neurologist said, " 'Functional' is not an appropriate term for a well-described condition" so anyone here with well described rare or common conditions don't need what can be a harmful label for many patients. Getting this label is far too easy, getting shot of it is far too hard. Which seems telling to me.
I'd take it two steps further than these issues, though: First, it's not OK for doctors to use euphemisms that means one thing to patients and other things to other doctors and doing so can be ruinous to the patient/doctor relationship. And, secondly, it's always worth looking into the interests of people who promote medical paradigms such as 'FND'. If, when doing so, you find that their research interests include 'hysteria', 'psychogenic' symptoms and 'conversion disorders' it's up to each of us to decide if those areas of research are relevant to the genomic era of medicine - or, indeed, this century or the last one - before deciding if the 'functional' label is useful or not.
Personally I’d take this conversation in a different direction and return to the poster’s post, comments and updates.
What lovemylife25 has said here is that they will be avoiding neurology from now onwards. So, having only been to the GP twice in 2 years and A&E once - they have now decided to avoid neurologists - and perhaps doctors in general -from now on.
If their neurological symptoms have diminished then short term this is probably okay. However if they haven’t then we now have someone who has effectively been put off going back to neurology despite having ongoing symptoms which haven’t yet been properly diagnosed.
So if these neuro symptoms progress there are a whole host of biomedical conditions, rare and common, which may account for these.
I now know so many people in this situation due to doctors attributing symptoms to “functional” or “psychosomatic” conditions. The impact of medical PTSD can in itself be life threatening - if a person doesn’t report symptoms of strokes or heart attacks - which often present in a-typical, unexpected ways.
So how on Earth is this “FND” diagnosis, or the depressing fiascos that’s it so often generates, in any way good medicine?
You're welcome, Dave_1 although it's the opinions of others that I included which feel of more value than mine. Can I return your politeness and ask what specific training about 'FND' you'd like to see a university level?
It's not that I don't believe in 'FND' Dave_1, I'm just curious about what you'd like to see on university curricula about it. If you want an open conversation, please be part of it - all opinions are necessary for that to happen
You have every right to feel aggrieved. I would have in those circumstances.
What is encouraging is that you kept your cool and maintained your stance. Had you 'lost it' there's a good chance that the psych-numpties would have used this against you.
I have had a LOT of things going on, so many symptoms, but due to some past experience, I knew instinctevly not to bother.
I know from MRI last year and years of disability and pain that I have a very messed up lumbar area, but also changes to my brain. They never did do my cervical area, but there is so much distortion, head not sitting right, angled to the side neck,
and I had at first in Feb, sore thumb joints, elbow joints...loud roaring sound in my head, and crusty eye lids, stabbing in ears and right side throat, then my face and scalp swelled, stabbing in different parts of head, not horribly painful, then ulcer beside nose, red swollen face as if vessels were breaking, feeling of fullness along arteries in neck, lip crease split, swollen eyes and so bloodshot. then my left side of body was trembling, weak, twitches in face on left side. My left side felt so strange. The symptoms constantly moved around, cartlidge in ears was sensitive and little shooting pains, same with nose cartlidge, some blood in nose and a sinus issue. Lots of clickering/grinding noises from neck.
I googled and went to vasculitis forums and many of my symptoms were identical.
Those Symptoms kind of lessened in a 3 month period, but I'm deteriorating. I also noticed a ton of anxiety like symptoms, agitation.
And I knew from my past experierence and research that I no longer want "medical diagnosis". I know that something sinister is happening, that the only thing would be offered is high dose prednisone, or "psych drugs"...because I know that neurology exists to funnel those they cannot "diagnose", or "help", to a non medical area called "neuropsychiatry". Psychiatry of any kind and much of neurology as much of medicine is refusing to say "WE DO NOT KNOW", "BECAUSE SCIENCE DOES NOT KNOW". So they shuffle them off to the wastebasket of their unknowns.
So they make up terms to label people and refuse to actually WANT to learn more. The central nervous system remains unknown. They could learn through patients. I doubt they believe in the bogus terms, no true believer in science possibly could. It should be embarrassing for them to make up childish terms, but many are easy to fool since "thinking" is not a strong point in mass of society ,least not until they are affected by the nonsense that exists in a huge area of medicine AND science.... but it gets patients off their backs.
Pat yourself on the back for refusing their lies, that ultimately hurt so many, and leads to no advancement in knowing.
Just to say I’ve still been having symptoms on and off since this post. The only time I didn’t have them was when I was pregnant which is quite common with autoimmune diseases apparently. Since this post I’ve had so many Doppler scans for raised d dimer (clotting factor) they have no idea why, they’ve suspected pulmonary embolism, multiple leg clots and when they scan they can never find any but my d dimer level is consistently sky high. Then I lost 3 stone in 3 month due to inflammation in my bowels, thought it was inflammatory bowel disease but the colonoscopy was fairly normal but sign of a few old erosions. The blood thing potentially caused issues with my placenta in my pregnancy so I was hospitalised for 2 months because of that, then ended up going septic as some of the placenta had been left after my c section 2 months after having my daughter. No one can work it out, I’ve been under respiratory for suspected blood clot in lung and coughing up blood, I’ve been under gastro, haematology for my blood and gynae due to the issues related to my birth. I’m still incredibly hesitant about talking about any Neuro related even though I’ve been getting a numb chin and my left leg has given way and I’ve fallen into our coffee table and was black and blue. I’ve been working through all of this and all of the investigations came back abnormal which is why they did all the testing but I’m a medical mystery. Just in case you wanted an update!
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RE: What or who inspires you when you have FND?
How can this be FND when I have a positive Babinski reflex?
Is it FND? Do I have rights to request other elimination tests?
Anyone ever have days/moments where you just don't 'feel right'?
