I keep hearing about people who are diagnosed with FND and don't even know that they've been given this dx so think it would be hard to find it liberating when that is the case, but maybe it is.
In the rare conditions world we are b... - Functional Neurol...
In the rare conditions world we are being asked if getting our diagnoses was liberating. Was getting your FND dx liberating?
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I was pleased to get a diagnosis as it enabled me to educated myself about it and then work towards better health and it’s taken a long time but I’m getting there slowly.
That's great to know - education is key and good health literacy, especially around any mental health issues, can make the world of difference. What are your next steps to better health and are you being empowered by your health care providers? Hope so 
My condition was not to do with mental health thankfully it was caused by a procedure at hospital that went wrong. I only see an FND specialist now as I will not waste my time with health professionals that are not knowledgeable regarding FND as they do more harm than good.
I'm confused (doesn't take much LOL - migraine brain strikes again). Your condition/symptoms were caused by a botched procedure but you now have a label that is in DSM (you know, the big book of mental health conditions who thought being gay was a mental health deal for yonks - ew).Has your FND specialist tackled the people who botched your procedure? Are they helping with a medical negligence claim for you? Someone who was originally diagnosed with MS got a big claim supported when they were later dx'd with a psychiatric/FND presentation of MS.
Your specialist sounds great though. I take it they've sent you all the papers like "the function of 'functional'" and 'What functional is doing in neurology and psychiatry' and 'Limits to truth telling' none of which were co authored by us punters. Who s/he?
My initial diagnosis was Parkinson's, so I thought FND was better than that. Definitely not liberating though - once I had FND (actually "conversion disorder") on my file, I was treated horribly by doctors/nurses/paramedics. My neurologists discharged me to a psychiatrist, because they don't want to deal with people like me, and the psychiatrist gaslighted me. FND/conversion disorder/hysteria/whatever they want to call it still carries a terrible stigma which has terrible consequences for patients.
I hear you, Van604. When the people behind functional conditions ('functional' being a human construct) start celebrating neuro-diversity, thinking genetics, admitting medical uncertainty - especially around rare conditions - and involving patients at all levels, some of the horrid stuff might stop. Any time now would be fine by me. Also, if it's as common as they say it is, where are all the respected scientists with it? All they need is for someone from, say, the team who developed the vaccine to talk openly about living with this core neuro-psychiatric condition and all manner of good changes will happen.
People with Schizophrenia are revered by the Navajo tribe because they can see other worlds whilst remaining in this one. People with bipolar conceptualise it as a super skill, not a disorder. I have occasional synesthesia and it's awesome. My mate's son is autistic and if you tell him any date, he can tell you what day of the week it was (which used to be labelled as 'idiot savant') and he is a brilliant programme coder. The wonderful poet, Jean 'Binta' Breeze, who died recently, co existed with Schizophrenia and told me it was 'Scary as hell. But the thought of going to hell when I die doesn't scare me at all, because I know what it's like and laugh at it.'
Would you be happier if you had the term FND redacted from your medical record? 'My body, my choice' isn't just about reproductive health. You could always opt back in to a psych diagnosis later if you felt happy to do so. I think now we're all empowered to self describe when it comes to gender, sexuality etc etc we'd benefit from being empowered get a bit fluid with these labels too.
The people who treated you with what Stone refers to as 'appalling contempt' were not well. They probably didn't realise this and acted out at you. They also forgot the first part of their Hippocratic oath, which is 'If in doubt, do nothing.'
Thanks for responding and I hope it didn't trigger you to do so. If the labels don't liberate us, they are probably not worth the paper they're written on.
There was a piece on Canadian TV recently about FND because people on social media were saying they developed it after getting the covid vaccine. Unfortunately, it reinforced the "faking" prejudice because they showed a woman who couldn't walk a straight line, but could walk down stairs easily, without explaining why. It was very discouraging, especially since it's the first time I've seen FND discussed on TV here.
TBH, I don't really care what they call my condition, as long as I'm treated with dignity and respect and not tortured with "pain stimulating techniques". They also need to accept that, in my case at least, there is not a psychological cause, as confirmed by several psychiatrists, two psychologists and Prof Edwards. Although why they would think that it's ok to torture someone who they think has a psychological condition is beyond me. What I have discovered through all this is that I'm probably autistic (according to a psychologist) and I probably have hemiplegic migraine or something similar. My next step is to try to get referred to a migraine specialist.
We are all treated appallingly by health officials and the stigma is huge any other illness people are shown care , empathy and respect but not FND !
So, not liberating for you, then. Sorry to hear that. Unfortunately the lack of care, empathy and respect isn't limited to FND, but I hear you. Jon Stone set out to eradicate this type of treatment, which is laudable on his part. He said the 'appalling contempt' was much worse 20-30 years ago but here it is again. So whatever strategy he has/had for getting shot of it, isn't working. Would you feel happier if FND wasn't in your notes?
I think we need to see it on TV , a story in the soaps about it , my Dr had never heard of it ! I did work in a surgery before my fnd forced me to leave and not one Dr where I worked actually believed its real they still think I have something else that's not diagnosed yet ! I have friends that work in hospital and they admit the stigma is still awful 😖
Yes, the lack of awareness is a huge problem. It's stigma busting if high profile people talk about it (as they do about migraine). I think people with FND often do have other diagnoses that may have been missed, so I can understand where your former colleagues are coming from. But those diagnoses may also be conceptualised as functional (as migraine is, to some people) so even if you got another dx it shouldn't mean that the FND isn't taken seriously. I'm so sorry you lost your job. I'm glad your friends understand.
I think this is rare but I’m from San Diego, Ca and am staying in LA for 6 weeks receiving treatment for FND. Although none my Drs, therapists,PTs, family, or friends have heard of FND, I have been treated w respect. They all looked it up and are so supportive. They are all very interested in my treatment so they will know what to do if they get another patient w FND. Almost nowhere treats FND in the US. I was diagnosed 9 mos ago and am beyond grateful to find this place let alone having the means to stay in a hotel, etc. It has not been an easy task by any means.
Don't get me wrong my family & friends are amazing & it frustrates them like it does me . I think because mine like so many others progressed so quickly people struggle to understand if we could see people with fnd on TV telling their story it could change things xx
Some describe it as rare, others think it is a common core neuro-psychatric disorder but the focus is often on the misdiagnosis stats rather than the growing patient population of people who are identifying as neuro-diverse. I am so happy you are treated with respect and that people around you are educating themselves so they can help you and others - that's great and I'm sure it's who you are inside that's empowering them to do this. I hang out in the rare space a lot and would love to see more engagement there from people living with FND, like Bridget, who has a rare condition too. But I know she's super busy and doing great work getting data points mapped. The difficulty is that people with rare conditions are sometimes told that if they don't accept a conversion disorder diagnosis their primary care will be withdrawn so they can have challenging diagnostic journeys and tend to feel traumatised by the threat. Which can, of course, lead to them developing symptoms they might not get otherwise which could be classed as functional. So we also need to have people talk about trauma informed responses too, as they do about PTSD. Pride helped with this since people who don't identify as straight were shoved into DSM for years and some found that traumatising - I think I would. Hats off to you for getting to where you are now
having FND on my notes has literally almost killed me on a number of times as I actually have 3 cavernomas which all have their own challenges and are evidenced by MRI scans etc the one in the basal ganglia has given me dystonia which alone is fine but the complications dystonia brings can be potentially fatal so if the dystonia is ignored means treatment not given means potentially fatal condition so no it has not helped and the diagnosis was put together from historical medical records and not any medical testing.I am at level 3 complaints and also have taken this up with a lawyer due to how
w many times my life has been threatened
Have you tried discussing this with Prof Stone? He is working hard to try to eradicate bad practice around how this diagnosis is made sometimes and more examples like yours will help him in his quest. You can leave feedback on his site and make suggestions as to what needs to change so that people with FND *and* people in your situation get timely and accurate diagnoses and appropriate treatments. Your case is/was truly terrible and I really feel for you.
to be honest I wouldnt even know how to communicate this as what actually happened was I had a bad/poor reaction to every drug tried to control the dystonia and by that I do mean if there was a potential threat to life/organ damage then I got it so to be fair the neurologist was not in a good place...meantime I did some research on the back of something I discovered in my support group...now I read everything I could get my hands on and I involved the pharmacist to make sure that I was understanding what I was reading and the reason for this is that the solution was not only too simple to believe but I could buy it across the counter, now jump the story forward it was right enough the pharmacist not only knew about it but had seen it in action but and its a big BUT its off license in Scotland lol....and the tablet we are talking about here is benadryl. Its the diphydrahendramine element that sorts out dystonic storms/severe flare ups...now the neurologist laughed in my face and told me thats a hayfever med he then muttered something under his breath which I caught came home and again checked it out with research and spoke again to my pharmacist and it was right enough this hayfever med belongs to the family of anticholergeneric drugs which is the same family of drug I get through IV when am taken to hospital with severe attacks which in real terms means that my respiratory system is going down. i have this tablet on repeat for another allergy type issue so the pharmacist would and could speak to me due to this however if I went to the chemist to buy this drug and was asked what I was using it for if I told the truth and said dystonia she would not be allowed to sell it to me as she would run the risk of losing her license to practice......jump the story on again and I did a 10 week trial with nothing but pharmacy support but I did just to keep everything right sent a typed up weekly diary sheet from my journal to both my own GP and the hospital neurologist and the outcome was 10 weeks with no dystonic storms the dystonia is managed at a level that it can be cared for at home now without major attacks that require resus....I have done resus and HDU twice and one time the arrest team called my family in at 7am in the morning as they were struggling to get my respiratory system up and running again...its seriously life threatening for me in the real sense of I could die....only a few weeks ago ...having had covid the dystonia has become problematic again....I was denied an anti histamine tablet in a hospital ward when my gullet swelled up and this was because of the FND and 3 days later I could no longer take on my regular drugs or food or fluids and I had to call my family and beg them to get me out of there after I went to sleep on the Friday night and woke up on the Saturday night so confused/distressed that the nurse got a doctor to see me....am not a great supporter of heres your diagnosis even though its been another diagnosis for 20 years its now FND and your medical care plan that has kept you alive is now gone and that is my reality...its a constant fight to stay alive if I have to depend on medical staff for any new symptom....I have the optician looking after ocular dystonia and the dentist looking after mandibular dystonia so I dont have to deal with the crap I get from neurology but am still under a neurologist but just involve him as little as is humanly possible...the paramedics are more skilled at settling an acute attack than a neurologist sorry this is a bit of a rant but its horrendous...
I'd just say that someone asked if getting the diagnosis had been liberating for you and you felt it hadn't been because the rationale for the FND diagnosis wasn't explained to you and the dx may have been based on what other doctors had written, rather than the positive signs needed to make this dx. Jon Stone is clear about asking doctors not to believe everything in the notes when making this diagnosis since he knows some of the opinions in our records can be inaccurate and/or based on specialism biases.
You can say that you feel that having FND in your notes caused what's known as 'diagnostic overshadowing' because it took so long to get your additional diagnoses and access treatments for them, which resulted in your health deteriorating. If you've had negative experiences in some health care settings since this Dx was given, you can mention that and say that you don't want to go into great detail about it because it can be traumatising to relive those experiences. As you know, Jon Stone is based in Scotland so he is well placed to deal with this since I know he wants the region to have an excellent reputation. He's also aware that people are being diagnosed with FND and then promptly discharged from neurology with no support and that should not be happening at all.
No, not at all, just added to confusion.
pollybanana - I'm a Polly too - hello
Hmm, I'm told it's meant to be therapeutic to get this dx and that the diagnostic process can be part of the treatment (although I'm not sure how people are able to give fully informed consent to the treatment part, if they haven't yet been given the dx). A neuro-psychiatrist I met at a public meeting at which I was one of the speakers, said people are relieved and feel better when they get this dx, know what's 'wrong' (his word, not mine) with them and can join the support groups.
The people at the table I was at were a bit baffled and during the break we talked about what that would sound like in the context of a cancer dx. Yes, it can be a relief to get that dx cos then people know that treatment can happen (IE whatever interventions they consent to in terms of psychological support and evidence based protocols etc), even if the cancer is terminal. The powers that be - and the patient experts - feel that the way their cancer dx is given can make a big difference to how someone approaches their life afterwards and I think there's some qualitative research about this happening.
But we felt that the therapeutic benefit of the way the FND dx is given needs measuring in a similar way. I expect someone will get round to doing that sooner or later, if they haven't already, cos they need more funding for treatments. And if people all get better at the point of diagnosis, the onward funding won't happen. One lovely woman at my table said 'hold on, if they feel better, why would they need support groups?' I had loads of questions for him but he'd scuttled off, shortly after his presentation. And although the organisers sent my email on to him, I never heard from him.
Have you told whoever dx'd you that it added to the confusion? Confusion in health settings probably isn't therapeutic at all but, again, that probably needs measuring. It might be worth leaving feedback on one of the sites about this since there are clearly some areas for improvement.
How are you doing now? What are your next steps?
All best wishes xx
Hello Polly, Polly was my beloved dog. My name is Jan. In answer to your question, where do I go from here? Watch and wait .My 'symptoms ' started seven or eight years ago,maybe earlier with pins and needles in my arms and legs. I was hospitalised for a few days, had mri, ct scans etc. and sent home with
Lyrica and told it was just one of things people suffer. My motor symptoms gradually started to deteriorate. Th neuro discharged me to the Pain Clinic
The one good thing she did was prescribe Neupro patches for my restless legs, which helped more than anything else.
Fast forward a few years, I moved to a different area nd my GP sent me to a neurologist. More tests and her diagnosis was cerebellar ataxia. I was followed up for a couple of years until I moved again , back to my original area.
I had no neuro care, but as my mobility was becoming more difficult I was referred to neurology again. Due to C19 it was a year before I got an appointment. She admitted that it was not possible to rule out any organic disease but my symptoms were primarily functional.
My problems are movement disorder and started slowly to the point where I have to rely on a wheelchair and can no longer drive.
It did not start after a trauma, or accident but progressed relentlessly with no let up.
I have had increases in my Neupro patches which help greatly for a while
But have now developed rigidity in my arms and legs plus what I feel could be PD symptoms.
My last letter diagnosis says Fibromyalgia, chronic fatigue syndrome, restless leg syndrome, functional neurological disorder, decreased mobility. ?tremor.
I have agreed to counselling and physio, butI won't hold my breath.
Yes, I get depressed at times, but I was a very active person who now finds it difficult to walk across the room.
So, I did not find an FND diagnosis liberating. That is my label as all my other tests were negative.
Apologies for the long rant x
Hi Jan - Polly was a lucky dog, for sure. I am good friends with an Ataxian and have heard similar stories amongst his tribe far too often. (He's looking for blog posts atm so I can hook you up, if you like) Fibro is/was considered to be 'functional' by the powers that be for a long time and it was people like Annie Oaklander (she's on you tube) that shifted the focus from 'it's all in your mind' to doing some proper research into small fibre neuropathy etc.
I'd say that rigidity (and the tremor, if it's not entrainable) needs checking out with an Ataxia specialist. Might not be from that but they should be able to make onward referrals and if it turns out to be from Functional Motor Disorder there are some good treatments available now. Your physio may be able to help with the initial referral to a suitable Ataxia specialist.
Yes, when we lose abilities we once had, it can be depressing. But we're people first and patients second (or 5th or whatever) and I'd be worried about your mental health if you didn't get a bit down from time to time since that is a natural, human response.
The FND dx should not be made as a result of normal tests alone. Prof Stone is aware of this and fairly adamant about it so if you have the capacity to contact him, please do. He and I don't always see eye to eye but his priority is to get people the right treatment at the right time, reduce stigma and not leave people with a label that has no therapeutic benefit to them, even if it was accurate at one time. All the conceptualisations are in flux but that should not hinder you on your path to better health and strength.
You never need to apologise to me xx
I became a member of Ataxia UK when I believed that was what I was dealing with. I know some of the problems encountered by patients. My old neurologist was supposed to refer me to the London Ataxia centre
But in her absence (maternity leave) the locum did a referral to a general movement neurologist. He confirmed my symptoms of Ataxia but felt the cause was functional. He offered me a genetic test for Huntington's and suggested I saw a psychiatrist and discharged me from care. Most unpleasant experience from a rude doctor.
I have had physio in the past (well 3 sessions a month apart) which did not help. I did not have the strength in my legs to push the pedals round on a recumbent bike. She said she could not help me and suggested hydrotherapy, but the pool closed down and covid happened. My current neuro says that in either case there is no cure and they can only treat the symptoms.
I am to contact her if I have any problems.
I have had so much poking and prodding, including a lumbar puncture, I have decided to just wait and see. I don't think there is anywhere to go from here except round in circles.
I'm so sorry. Why is it often the doctors who think things are 'functional' that are so unpleasant and rude? Might be slightly better than the 'appalling concept' people thought to have 'functional' symptoms had to endure, but still not OK. I get 'functional' symptoms when I'm around people like that and it's always a signal to leave, pronto.That feel like a sensible decision. Being passed from pillar to post is no fun. Having said that, there are new people working in the field of Ataxia and some of them come from multi-disciplinary backgrounds so won't fit people into boxes, first chance they get. I'd report the rude dr to Jon Stone - he can have a word or six since he really disapproves of that stuff still going on.
Being labeled as a patient with FND threw me into a deep horrible black hole. I knew instantly that my life had been irrevocably changed. I never really believed the dr was right. I felt like the diagnosis Was an easy out and did not fit my circumstances.
However the doctors tell you that denial is one of the symptoms. One said to me, I wasn’t really faking it. And as soon as I could accept my diagnosis the symptoms that I was subconsciously manifesting would greatly reduce.
Not sure how nystagmus and mri hyperintensities lighting up the same parts of my brain continually for 18 months could possibly be Subconsciously manifested?
Anyhow, It took me a long time to get the proper care for my neurological issues as well as the depression and anxiety that devoured me after being miss treated under the FND label.
I will always say to educate yourself and know that doctors are not always right. You HAVE to be the strongest advocate you can be for yourself.
If you believe the diagnosis fits, then great. I hope it brings you relief and a healing direction. For me it wasn’t that way. It was not a positive thing in my life. It almost ended my life many times.
Blessings to all.
Hi Daesin - thanks for responding and I agree, this label doesn't seem to confer much therapeutic value and may make things worse for some people. The deniability deal is a classic deflection - first blame the patients and then deny them any autonomy by telling them that denial is a symptom if they question the dx. I guess it might be but it might be a medical construct (created with out us) that is in need of qualitative and quantitive analysis. People are also told that if they deny having a conversion disorder, that's a symptom too. But last time I looked it wasn't on the symptom list. Sometimes I think they are just making it up as they go along so they can pick up their fee and go off to the golf course, or whatever.
Imagine if I denied I have MdDS (which some of the powers that be want to shove under the 'functional' bus) - would that be seen as a symptom of MdDS and if I stopped denying it, it would go away? If only 
Totally agree that if the label is useful we can accept it and then walk away later if it doesn't serve us - and then go back again if we need to. But if it's applied to a condition en bloc, without the agreement of patients, it's like saying it was OK for DSM to conceptualise people who are gay as having a mental health disorder. It wasn't and it was collective action that made that stop. So yes, individual advocacy is important but collective action is crucial.
Would you be willing to leave some feedback on Jon Stone's site? I doubt he would want people to be thrown into a life changing deep, horrible black hole or be mistreated under the FND label. So much for a term (functional) that gets used partly because it's 'easily used with patients'. *Sigh*
Hi I am new to FND but have been ill since I was a teenager(all conditions that show up on scans, scopes etc) yet I was treated like you, even then, because I was too young. In the last few months I learned I have a cardiac condition & most medics are great. Unfortunately for me they tell me I don't look nor act the way they expect me to. As a result there often are snap judgements, & I meet with scepticism and wariness. Usually after reciting my 39 year history, surgeries etc I gain respect but I always feel like I should not have to prove myself. I was also told that I was strong & that trying/fighting too hard (with FND symptons) maybe was not the best way towards recovery. Whereas with all my other conditions I am commended for fighting through... I really feel much like you. I am finding that I am either being told I do too much or I am not doing enough. It has been depressing do I decided to hold onto my dignity, ask my questions & try to deal with it with an open mind, but not allow myself to be put down. Frankly It's exhausting but each small victory gives me hope. Trust yourself and I hope you find some relief and some peace in all of this. I will be thinking of you & all on this site..best wishes.
I've actually had several conversations with Dr Stone. He seems to want to go in the right direction but I'm afraid there's a big mountain in the way.
The way I've read it, and I do work in the mental health field, or at least I used to. Fnd is the nice new name for the umbrella coverage for conversion disorder. They changed a few of the words around in the diagnosis list but really it's the same thing. DSM-5 authors stated that this was due to an unfortunate negative connotation to the diagnosis of conversion. They felt this was distracting people from gaining help.
Knowing exactly what conversion disorder was and knowing that this doctor had just doomed me, gosh that was a pivotal moment. I literally dialed my husband and handed the doctor the phone. There was nothing else doc could say to me. I no longer found him useful. He was ever so gracious when he advised my husband that I was really ill and not REALLY faking It. Also, that he may have to consider residential care for me for a short time in order to get past my disorder.
Funny thing is ......it was his boss that found the lesions in my brain, that my eyes didn't converge or align properly and noticed that the nystagmus never stops. Oops guess it's not mental illness after all.
I cringe every time someone says they have been diagnosed with fnd. My heart breaks for them for the hell that they've been through and the path that they're on.
And the best part, I'm currently on disability pension from my work. Now I learn that because I have a mental health diagnosis (depression and anxiety secondary to medical issues) my insurance will end this December. It doesn't matter that I have legitimate and documented disabling medical issues. The fact that I have a mental health diagnosis means the insurance company no longer has to pay my pension or my medical bills.
Medical Care is a little different across the pond. But none of them ever want to pay for the care we need.
Fun fun.
Yeah, non duality really doesn't apply when insurance companies don't buy into it. That sucks. Conversion Disorder is back with a bang, thanks to Perez and the Mayo clinic. Good. It's much easier to take the piss out of than 'functional'.
I get 'functional'/neuro diverse 'symptoms' sometimes and find them very useful as a gut instinct about who to trust and who not to trust in terms of health care providers - handy super skill to have
Have you told Jon about the insurance thing? I heard exactly the same from a doctor who lost her job and then her insurance because of the mental health tag. All whilst being treated with appalling contempt by her caring doctors.
The not faking it thing is another classic deflection - they're reassuring us that we're really ill when we already know that so don't need their validation.
Yes, it is different across the pond. And that's where this whole thing falls down. Someone in the rare space asked me 'what does 'functional' mean in Nairobi?' If it gets conceptualised as 'Interdisciplinary Medicine' or 'Integrated Medicine' all manner of good things can happen.
No, I haven't spoken about the insurance thing to anyone except my local area. I may just send a copy of the letter with a cover letter to his office. I don't expect he would be able to do anything about it for me per se, but he might be able to help someone in his neck of the woods. Good thought I might have to do that thank you.
Currently and working to obtain national disability through the social security program here in the US. It's been a long run but I was blessed to get a fairly quick telephone hearing. So by the end of the year I will have lost everything and hopefully gained something back. Fingers crossed, oh yeah and eyes too LOL
Blessings to all
What I truly hate is them saying FND is part of depression or past experiences. We have all been through things that have shaped our lives, probably not always for the better, but why should that come through as walking differently, acting differently. They only say that because they are too scared to say they don't know the answer. Out of sight out of mind, so they ignore us and tell us to live with it, giving no way to do it. It's the kind everyday people that make life just a bit more bearable. Take care. Moni
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