Another report I've had from someone who was misdiagnosed with 'FND' ...

[210272]

This report came via a friend and was from someone who has diabetes which often causes problems with balance. But because they were told it was 'FND' and no further tests were necessary, the diabetes went undetected for 2 years. This person is now physically very ill and is also suffering from medically induced PTSD. Medically induced PTSD from medical gaslighting is common for people with rare conditions but also more common ones including diabetes and endometriosis. Is this more evidence that 'FND' is a dangerous diagnosis?

[Hidden]

I’ve had a year of extra neuro symptoms on top of my existing small fibre neuropathy (SFN) relating to autoimmune diseases. I’ve just had tests for diabetes and learnt that I’m glucose intolerant. My GP practice have never thought to test me for diabetes for shaking, twitches and upper abdominal pain (chronic pancreatitis and fatty liver - both caused by very active systemic inflammation).

And I’m absolutely furious with my neurologist for not requesting these tests were done in the first instance before adding her “functional overlay” nonsense a year ago. She came to my case as a second opinion with an FND agenda and was trained in the same hospital as Jon Stone.

I don’t know how we can get this dangerous diagnosis stopped. But meanwhile I’m now left without a neurologist I can remotely trust to do their job and help me - despite me having an organic and progressive SFN - in the whole of Scotland!

[eviedotty in reply to Hidden]

its really scary this and there must be something that can be done, even a campaign of some sort...I for one would definitely support that after my own experience

[Hidden in reply to eviedotty]

If you live near or in Edinburgh then you might want to do a one person protest outside the Royal College of Physicians Edinburgh today? Jon Stone is giving a presentation there on FND. events.rcpe.ac.uk/neurology

If it weren’t for the timing I’d have been up for a silent protest (we could have held gaslights) in a silent vigil. Next time eh.

[artmom in reply to Hidden]

Hmm. They’re discussing the ‘management of functional disorders with psychological therapies’. Reminds me of the effectiveness of those being something like 13%, as stated on Stone’s own website maybe? Would a drug still be advocated if that was its level of efficacy?

[Hidden in reply to artmom]

Great point artmom.

[eviedotty in reply to Hidden]

I am in a wheelchair so am up for anything that can be wheelchair accessed...am just so angry just now I have been consulting with Dr Google following just how poor the medical care is around neurological problems and this is not for the first time...My care plan for dystonia included a long term drug that in the end had the consequences of the arrest team calling my family in as they struggled to get my respiratory muscles unlocked and I had gone unconscious so dont actually know what happened till I came to with a full arrest team around my bed and was told 'welcome back'...the second time I was told my care plan was to 'call an ambulance' and this gave me 3 weeks in a hospital bed with then 3 neurologists visiting me and the only thing they could come up with was a drug that was already red flagged to me and the thing I dont get at all is the care plan am on just now should have been initiated by them once I told them about it then it would have been a team effort now I am better than I have been in years ...have issues related to the road to recovery and instead of assisting me by taking a serious look at the care plan even at this late stage they could have invested a little time and effort to understand and even discuss whats wrong and were do you think it is coming from but no...FND...now am doing more research and it appears that the evidenced MRI scans show exactly what the problem is and how to treat it...and get this like OMG...I need a neurologist input like ffs...arrrrggghhh

[210272 in reply to Hidden]

The speakers could have all no-platformed themselves since this doesn't appear to be a #patientsincluded event. Affirmative action like that would speak volumes.

[Hidden]

I should add that both my parents died suddenly (my mum died 10 years ago today) due to undiagnosed conditions and both had neurological symptoms prior to their untimely deaths. 30 years ago today my dad was rushed to hospital with a huge silent heart attack caused by undiagnosed diabetes. I have told this to my Scottish neurologist several times yet she still pursued her FND line - probably citing this as another symptom of trauma. I’m having CBT sometime at her request - for trauma induced by terrible neurology practice.🤷🏼‍♀️🙄😡

[eviedotty in reply to Hidden]

wow that just seems inhumane to be treating you like this with this kind of family history...do the medical profession ever learn from past mistakes?...the job I did every time a kid died and was reported on the news and it was nothing to do with my office but there would be reflection training type days and protocols etc would be looked at again and the way of working would be tightened up to make sure that no one in my office would ever be on the 6 o'clock news...am just realising how lucky and supported we were at work...sending you love and hugs for today hope its going ok for you xx

[DNE92 Moderator FND Hope UK]

I am pushing for testing to rule out/in channelopathy which causes periodic paralysis. And just looked at my medical records- twice someone wrote it needed to be ruled out. My Consultant Neurologist never mentioned it to me. And the testing never done- the entries were dated 2015. He just sees a co- morbid mental health disorder and so I dissociate. I have never dissociated in my life...I know people who do so I know that I don't. I lie in agony during my seizures...I "wrote" a short story during one to help ease the pain and when the seizure ended typed it up and submitted it to a competition. Didn't win but I am in the anthology- shall send a copy of the anthology to my Consultant Neurologist 😁.

[Jofachiz1 in reply to DNE92]

Hi Louyse. What kind of testing are you trying to get to test for channelopathy? Are you able to see a neurologist who specialises in those kinds of diseases?

[DNE92 Moderator FND Hope UK in reply to Jofachiz1]

Hi. My GP has just written to University College London who have a specialist centre. Only just written so I don't know what will happen but their Centre does the works - genetic testing, EMG of the muscles. I'm in Scotland but I think they take referrals across the UK. I just want to know whether I have it or not. It's not curable, as far as I understand it, but there is the possibility of medication which could lessen my seizures. I get several daily- full body paralysis sometimes interspersed with back arching and face distortion to the point I think something is going to snap. Plus I'm mute so can't even make a noise to help lessen the pain. My Neurologist wants to see how 'dissociated' you feel stuck like that anywhere from 1 - 3 hours at a time. Personal best is 7 hours and 15 minutes.

[Jofachiz1 in reply to DNE92]

I was misdiagnosed with FND. I have a channelopathy called periodic paralysis. Very rare. There are very specific EMG tests that you need to do. Not just the standard ones. It doesn’t show up in blood tests, even genetic testing doesn’t always show mutations. Some Channelopathies present as seizures, paralysis etc. Work out your triggers. Do your research. See doctors that actually specialise in these diseases. Any external triggers (heat, cold, exercise, food etc.) all signify organic disease. You have described full body paralysis before. A very useful organisation is periodic paralysis association. Lots of information to help you work out if this might be your problem.

There is actually a physical explanation for why strong emotions can triggers paralysis etc.

Sorry for the short but direct reply. I hope something I have told you helps.

I had never even heard of these things when I first got sick and diagnosed with FND. Its a lazy rubbish diagnosis that puts the blame on you for being sick with false promises of getting better.

Made my life miserable. Even though I now know what is wrong, I am still struggling to get over how I was treated and tricked into a FND diagnosis.

My kindest regards

[DNE92 Moderator FND Hope UK in reply to Jofachiz1]

Thanks. The Prof at UCL specialises in channelopathy so I hope he'll see me. We"ve done some research and when my hubby spoke to my GP he didn't need any convincing in making a referral. In addition to me I have a parent with potassium problems that nearly killed them and is constantly monitored and 1 of my kids has chronic severe migraines which I believe is how the mutation can also present. You'll know much more than me that having channelopathy isn't great either. I just want to know one way or the other. To never even have it mentioned to me by my Consultant Neurologist who is considered a UK expert in FND annoys me. He told me once that I was too complex for treatment. I nearly fell through the floor- where is that in the NHS charter: cradle to grave care unless you're complex. I have not been offered any treatment for my FND. My Consultant Neurologist once said "oh someone much worse than you got better" so I asked what treatment they had had. Was told it wasn't relevant to me. If I have FND fine but I expect to be offered treatment and treated with respect. I don't think I'm asking for too much.

[Hidden in reply to DNE92]

You definitely aren’t asking for too much. I’m so saddened by stories like yours and mine. When did it become the case that neurologists, especially those in Scotland it seems, started to use trickery to diagnose a condition of their own invention, rather than to stick to diagnosing or excluding serious neurological conditions they know about and are trained to diagnose and treat?

People with rare conditions fare exceptionally badly in the devolved regions because we can’t even seek the input of experts or second opinions out of our own health board areas. This makes us sitting ducks for neurologists and other specialists to dump their “functional” labels on - and most of us then have no access to an objective/ neutral second opinion from an expert in their field.

I’m so glad, at least, that your GP is trying hard on your behalf.

[Hidden]

I’m sorry but where’s the accountability o the part of the patient?

I get my physical every year. Aka bloodwork thus showing if I’m pre or diabetic. Docs are just human too. There’s no way such an easy disorder would have been missed if bloodwork was done. I ask these days for full panels almost every 3 months to check the status of my health.

In the USA getting a FND diagnosis is near impossible so I don’t think it’s just “thrown” around.

[210272 in reply to Hidden]

Why would you want to get diagnosed with the rebrand of 'hysteria'?

[Hidden in reply to 210272]

Because some people are not accountable enough to accept that doctors don’t begin to know everything about the workings of mind and body? So they expect doctors to give them a rebranded title to explain their symptoms rather than both doctor and patient taking on board the fact that nothing is “functional” - everything is organic including - our minds, brains, nervous systems and guts are what makes us flesh and blood.

So if something is going wrong then something IS wrong. But it’s not always up to neurologists to find out what - it’s only up to them to exclude the biomedical/ structural neurological illnesses and then tell the patient their problem lies elsewhere. Some people just can’t hack having awful neuro symptoms that have no name but are either of the mind or of the body - but are not neurological in origin.

If something is wrong and the neurologist can’t be sure of what then the accountable patient has to look elsewhere themselves?

The suggestion of lack of patient accountability has been raised here so I will throw it back at “FND Sucks” and say that by supporting the premise of “functional” you are allowing doctors to take symptoms out of their rightful context of mind or body, or both, and are willing to take a “hysteria” or even a “malingerer” diagnosis on rather than take responsibility yourself to pursue it elsewhere or accept these symptoms as medically unexplained.

Looking for a diagnosis of FND can and does do much harm to people who will then likely have both their mental and physical health problems ignored.

[210272 in reply to 210272]

FND_Sucks - if you want a 'conversion disorder' dx, go see Prof Staab. Apparently he's diagnosing people with it at the rate of 3 a day.

[Hidden in reply to 210272]

Conversion disorder is no longer a diagnosis please educate yourself. I’m so sick of this bullshit stigma. If you don’t believe in FND please leave this site. It’s for people who are trying to get help.

This is why FND was created bc they don’t know how it works. Just like many other medical illnesses.

It’s really insulting to have people in these forums who are further perpetuating that FND is all in our heads and yet the science states that it’s not just a mental health issue.

And even if it was why are you putting down mental health. Your brain is still a functioning part of your body. Brains need help too.

Ugh! Just stop the stigma.

[210272 in reply to Hidden]

'Conversion disorder' got rebranded as 'FND'. Google 'is FND a mental illness?' and see where it gets you. Yes, I know brains need help and that mine is a functioning part of my body. At what point am I putting down mental health?

[Leesaloo in reply to Hidden]

Hi hidden, I too in the past have felt like you on here. The negativity from certain people about the FND diagnosis had become very extreme. I totally agree that everyone has a difference of opinion but I too wondered then and now why they have to constantly bash the fnd diagnosis. I used to come on the website a lot for support, understanding and advice. Now reading through yet again same people with the same negativity going on and on about how they feel about this diagnosis is depressing. Most people have the sense to write once that they disagree with this diagnosis but all I’ve read on here is the unending whinge of disbelief and not always put very politely. As someone once said if you don’t like the post scroll past but unfortunately every post I’ve looked at the same ones are repeating their negativity over and over. Like you I asked in the past why would you want to be on an FND help website if you disbelieve you even had it BUT I now think they have no where else to bang their drum over and over where anyone just might read it. It’s such a shame for anyone with as much knowledge as they seem to have do not wish to just want to help people who are suffering. Banging on their own drum is more important to them. I’m sure their negativity will now be directed at this post BUT we all are suffering otherwise we wouldn’t be reaching out to this website in the first place. If you don’t like what I’ve wrote SCROLL past. At least this is just one post not like all the ones I’ve had to get past just to read something without negativity.

[Hidden in reply to 210272]

Bc that was a long time ago. They also used call pregnancy hysteria and masterbate women to get it to go away.

Medicine changes all the time. I think of FND like CTE. They know the symptoms but it isn’t always diagnosed correctly or right away.

I don’t know why FND has to be such a stigma. Creating the stigma in a place that’s supposed to be a support group is toxic.

When I found out I had FND I felt validated. How can we all have similar symptoms and yet all be making it up? We can’t, the science just hasn’t caught up. CTE is only correctly diagnosed when the persons brain is examined after death.

Please don’t perpetuate the stigma. Be an advocate so people can be diagnosed correctly and not keep being told they’re “making it up”. We don’t need this, please thing of others and not the old “ hysteria” diagnosis bc it’s clearly wrong.

[210272 in reply to Hidden]

Um - have a chat with Jon Stone about stigma around 'FND' please. Apparently he's been known to say there's a 'plague' of it.

[Hidden in reply to 210272]

Maybe where ur from. We clearly see differently.

If u don’t have it then leave the support group.

[Hidden in reply to Hidden]

Why can’t we accept and acknowledge that the mind and body are one and everything is organic? Why do you need to feel validated at the expense of the people who are incorrectly labelled with FND and then get stuck with this label and who then aren’t investigated for serious diseases or musculoskeletal problems because everything is assumed to be “functional” from that moment on?

You seem to be saying that those who continue to be saddled with this diagnosis against their will should put up with it simply in order to help people like you?

Yes this is also a support group for those with an FND label hung around our necks and most of us on this post are supporting each other here because we are those who have suffered more from having this label on our medical records. If the diagnosis is made so insidiously that we can’t escape or redact it then we need support too!

Also I really object to people saying that they had years of being thought to have mental health conditions and that we must stop the stigma associated with FND? Why is it so important to be told by a neurologist that you have a real condition and it’s not necessarily psychological? This implies that a psychological diagnosis carries more stigma. Why should people with mental health conditions be stigmatised just so you can feel less stigmatised?

Personally I’m embracing having psychological problems over having FND now because at last the stigma attached to having symptoms born of psychological trauma (partly caused by neurologists and their FND) because everything is organic - nothing dysfunctional is “functional”.

[Hidden in reply to Hidden]

The functional portion comes from the part of FND that affects the body’s functioning.

Like I lose the ability to walk... that’s not psychological.

[Hidden in reply to Hidden]

It might be - who actually knows since most neurologists aren’t trained as clinical psychologists or psychiatrists? And why would it be so bad if our neuro symptoms were caused by a psychological illness anyway? You seem to be attributing stigma to mental illness but I thought we were now in an era where we can be honest about mental illness and de-stigmatise it? To me this is much more important than trying to de-stigmatise FND. I’d rather attribute my tremor to anxiety disorder than be told I have malfunctioning hardware to software/ conversion disorder causing my tremors.

[Hidden in reply to Hidden]

I’m guessing you’re in the USA then? The premise of FND originates from Freud’s conversion disorder theory. But as far as I’m aware, it was only revived by professors Jon Stone and Mark Edwards here in UK, relatively recently under this heading. So I guess this UK experience informs a lot of the exasperation expressed in comments on this post.

Re patient accountability - under the NHS this is actually made really hard now for many. Firstly it’s very hard to get a non urgent appointment in many GP practices and we can’t just order blood tests ourselves. In the case of devolved areas there is very little choice due to incredibly tight protocol of getting anything done.

I have a multisystem autoimmune mix and I have to get my full blood count tested at regular intervals but have no choice about time of day, fasting glucose bloods etc. I also need my bloods viewed in context of medications I’m on such as thyroxine and controlled nerve pain drugs, sometimes steroids etc.

I’m completely self educated and it’s a full time job managing my healthcare. I would say that, like many of my chronically ill friends, I take full responsibility for educating myself about lifestyle, diet etc. Many don’t I agree - or can’t for any number of reasons - lack of funds, literacy/ education, too sick, homeless, marginalised or unaware.

Here in UK it would be all too easy to have basic tests overlooked. And if we request specific tests such as B12 etc then we are all too often told that we are showing health anxiety from looking at Dr Google. It’s increasingly hard being a chronically ill patient here in the UK now.

And the term “functional” is thrown around as readily by some doctors here as a ready-to-hand ping pong ball. My dad was a highly educated man with gout and hereditary CVD and hypertension. He was put on Aspirin for sticky blood and gout and it triggered diabetes without anyone realising until it was almost too late and he was rushed into hospital with a silent heart attack. This was 30 years ago but could just as easily happen now.

[Hidden in reply to Hidden]

We don’t even have state or federal healthcare in the US.

I don’t want to argue. I just am so sick of the stigma of an FND diagnosis. It’s not fake, doctors are human.

You may not be able to order tests but you can ask for them. That’s what I do.

I’m just saying docs are human too and you have to be an advocate for your own health also. Getting yearly exams helps. And they do check for the most basic of things like glucose levels.

[Hidden in reply to Hidden]

Yes doctors are human of course - they don’t have hardware or software anymore than we do. They are complex, organic beings who can make mistakes - rather more often than not in my own case. But the important thing is that they can admit their own fallibility and concede mistakes. Yet this is very hard for many of them to do for fear of losing professional credibility or fearing litigation (more in the USA than here in UK).

If you don’t like these posts then scroll on by - there are plenty of other posts here for people in your situation to be supportive and receive support. FND is not a cut and dry thing like diabetes. It may be very hard to prove and feel like a fitting diagnosis to you but for some of us here it has been made at the drop of a hat and is a diagnosis we don’t believe in - and yet we just cannot get rid of it. We need somewhere to turn for support too!

Your positivity about your FND diagnosis is fine of course but it shouldn’t come at the expense of others of us who feel incorrectly saddled with this label. Being saddled with such a nebulous, questionable diagnosis is at the least, unethical and at worst, dangerous and potentially life threatening.

You clearly have no concept of how the NHS works. It’s not a case of free health care being better than what you have in the US - it’s just totally different. I can no more request which blood tests I would like to have than I can get my FND diagnosis redacted as a misdiagnosis. It’s just not possible unless we pay to get tested privately which, unwaged due to rare autoimmune illness, is certainly not an option for me.

Even getting an appointment with a GP or nurse is extremely hard for many here now due to the desperate shortage of GPs nationally. This is due to nhs cuts and pressures on GPs to cope with being on the frontline of the impacts of austerity ie social care for elderly, homelessness, drug addiction, malnutrition, obesity, mental health and chronic illness. For example I can’t even get an appointment to see a nurse about glucose intolerance or get a non soluble stitch removed from my lip next week!

[eviedotty in reply to Hidden]

whilst I hear what you are saying and I do...really really do!...I am on another FND support Group with a view to trying to get to grips and find myself getting involved in a particular thread around stroke type symptoms for example...the person has stroke like symptoms has had tests done and nothing showed up and therefore has the diagnosis of FND...I myself have the same diagnosis but when my stroke symptoms showed up as a bleed from a cavernoma in the left frontal lobe of the brain and I share that information as an FND patient I am aware or conscious of the other person and what this is potentially going to do as unlike this person mine did show up on a scan and so I did get clear tests results showing clearly how the stroke became diagnosed and then was further diagnosed as FND because my neurologist doesnt accept that cavernomas can cause such a big problem as a stroke and please may I quote my neurologist when he looked at the scan of the bleed which did show up as a snow white blob......'there are for me no medical concerns here'...now that will be for a stroke that has left a right side deficit! another example...I have dystonia told by a neurosurgeon that its origin is in another cavernoma in the basal ganglia of the brain that bled some years ago and then the condition became chronic and spread due to a drug I took through breast cancer to help with nausea and yet again this is FND...so as I share the story I am acutely aware that I have organic reasons here and am talking to a person who has not been given an organic reason and yet we both have FND...how does this sit I ask you as for me personally am not comfortable in sharing my story with a clear and evidenced by brain scans issue that is now being called FND...so still trying to figure this out as a newly diagnosed FND patient am I being unfair to FND patients because I feel that I am...I feel that there are some cases of misdiagnosis and its just not good because as you said here if you dont believe in the diagnosis then why are you here...well if you have organic reasons for your issues then again why am I here and the answer to that is that I have been told that an organic problem has been diagnosed as FND and am already being ghosted in a face to face with my neurologist who is unwilling to discuss a care plan that came out of America and is giving me more than I ever dared to dream success with the dystonia...

Bottom line here is that the whole FND thing is being used in my case as a diagnosis because the neurologist dont accept that a care plan can come from elsewhere ..in this case America...and have the results I have gotten...

[Jofachiz1 in reply to Hidden]

Sorry to burst your bubble but here in Australia where there is another FND clinic, I overheard one of the neurologists saying and I quote, “I love giving this diagnosis because it means you are going to get better!” She is clearly deluded. This diagnosis was dished out to patients who had fatal brain tumours and problems with some kind of spinal pressure issues who were unable to have MRIs due to the stents in their spines. I didn’t get the full story on that one, but how can a doctor exclude organic causes? They can’t.

In my case, this diagnosis was given without any genetic testing or muscle biopsies or even an EMG.

Despite me having severe muscle weakness after each Physio appointment (after exercise) to the point where I was barely able to make it back to my vehicle, my symptoms were ignored. One doctor even inferred I might be faking it.

Since starting a simple medication, I have had a massive change in quality of life.

My bloodwork always comes up normal, but the problem is not in my bloodwork, it’s in how my muscles process things such as potassium, sodium etc.

It’s not my fault I am sick.

I totally understand that most docs only get 2mins explanation in their training for rare disease, but it would have been fine with me if someone just acknowledged that they didn’t know the cause instead of putting the blame back on me by giving a diagnosis of FND. If you really read the neuro symptoms website, it talk about hardware and software and then goes on to say that the software is our thoughts, feelings and emotions.

I’m sorry if I sound harsh. I don’t mean to. But FND diagnosis for me meant no further investigation or treatment was required.

Pretty lame if you ask me.

[Hidden]

I’m out ... agree to disagree.

[Hidden]

Pretty hard in the us to be sued for malpractice.

We just see thing differently, why keep pushing ur beliefs on me?

[Hidden in reply to Hidden]

Um - because you pushed your judgemental comments on us first re patient accountability?!

[artmom]

I would pretty much second what twitchytoes says. What I would add is that with an fnd dx I am, I believe, highly unlikely to get any more help with my symptoms - why? Because they’re not ‘real’ (organic) enough. I find that highly problematic. I’m not a pill-popper. I’d say I’m more likely to go the other way. But when my quality of life and ability to function is at times greatly impacted, I need help and would take whatever help I could get, pill wise. With fnd I don’t believe I’d have access to medicine to treat symptoms. Unless I need serious physio to, for instance, walk, it seems the option is...nothing.

And if I don’t like what’s being said in a conversation here I stop reading it.

[Numina]

Hey guys, reading through all these comments, no doubt a diagnosis of FND can be difficult, traumatising and is often misunderstood or dismissed by medical practitioners.

Please PLEASE sign this petition (not started my me, but another FND patient) to make training, treating and understanding of the disorder by GP's mandatory.

To get the petition even looked at in Parliament, it needs ALOT of signatures! So please sign, share and let's get FND awareness and understanding where it needs to be ✌🏻

chng.it/Wygj2C8Z7T

♥

[210272 in reply to Numina]

I would consider signing it but the information in it doesn't make sense to me since the person who wrote it doesn't seem to have FND/Conversion Disorder but rather has had an adverse reaction to medication. It also lumps bad doctors in with the many good ones out there so although I know some people here have had suboptimal service, that is more of a systemic issue than one that specifically pertains to people thought to have FND/Conversion Disorder. Specific to FND what could be useful would be to have an NHS pathway for people who do have it, alongside a secure and meaningful way of reporting when FND has been misdiagnosed.

I'd much prefer to see a petition to ask for a gold standard, internationally agreed criteria for how FND/Conversion disorder is diagnosed. Currently it is often diagnosed on the basis of confirmation bias (IE '2 out of 3 people we see have this and I think you to do') and/or on the basis of normal scan results neither of which are OK and both of which lead to repeated misdiagnoses. There are meant to be positive signs to indicate this diagnosis but they seem shrouded in mystery which is not OK in the patients as partners era of medicine. It's worth noting that the Hoover's test is unreliable since people can have a positive test result for that used to rule in FND/CD when they have had an adverse reaction to medication that has caused weakness in that area of the body, rather than it resulting from them converting trauma.

Also I don't think it is wise for Hon Prof Stone to advise drs to not believe all the information in the physical notes when making this diagnosis. Sure, some of it may not be right since we can't expect doctors to know everything and consultants often work from their specialism biases when writing up clinical notes but he should at least indicate which information he thinks should be believed and which not - and explain why. To me, the current criteria for the diagnosis of FND/CD are far too woolly and not fit for purpose.

[Numina in reply to 210272]

Agreed, the petition does seem to point towards misdiagnosis, but I believe more awareness of the disorder would be helpful to everybody with FND.

With Regards to the hoovers sign and any other apparent "positive" signs, I agree with you there too, I've asked my neurologist to please tell me what his positive findings were. I know the MRI was normal, but so what! It is very frustrating he has just made up his mind from reasons he hasn't actually told me. Telling me he thinks it is most likely caused by anxiety and that its "software" opposed to "hardware" isn't good enough for me.

So frustrating 😤

[210272 in reply to Numina]

Yes, there seems to be a distinct lack of transparency about how and why the FND diagnosis is made. Which is why I think there needs to be a 'gold standard' so that we can question the dx if we don't agree with it (I don't have FND) and ascertain that the dx was made the correct way, rather than on the basis of confirmation bias, normal test results etc etc. I rarely have time to go through all the posts here but think a lot of people here have conditions that have no relevance to FND but that have not been fully investigated and may never be since they have been lumped in with FND. I also think there needs to be an economic and social impact report made about the over- and mis-diagnosis of FND since so much data is being lost about other conditions which is disastrous for researchers, especially those working in the field of rare conditions.

[MariaBanelli]

I was misdiagnosed with FND in the autumn of 2019. I'd been seeing a neurologist for well over a year. After my diagnosis I was getting sicker and sicker but because my GP now had a coded letter from my neurologist suggesting I was a malingerer, I had a very difficult time getting referred.

Eventually I went privately, where they discovered I had breast implant associated anaplastic large cell lymphoma (a rare man made cancer from breast implants). When my oncologist looked back through a years worth of blood tests he noted some problems and couldn't understand why these things were not picked up by both my GP and the neurologist I'd been seeing. I'd always been told my bloods were perfectly normal. My spinal fluid had raised protein but my neurologist also told me it was perfectly normal.

We now believe that my sickness was initially brought on by silicone implant incompatibility syndrome (SIIS) which induced an hyperstimulation of the immune system resulting in the production of autoantibodies, eventually leading to some very peculiar symptoms that first took me to a neurologist.

Unfortunately, in my case this is what led to this very aggressive cancer.

All the signs were there. They were there in my blood, they were there in my CSF fluid and they were there in my symptoms. Of course they couldn't find anything wrong with my brain. My brain wasn't the thing that was making me so sick!!

I'm still very angry about this. I'm fuming that I had to quite literally fight for my life whilst the NHS turned its back on me. I'm angry with my GP who suggested I try meditation and antidepressants and I'm especially mad at my neurologist for ensuring everyone in the medical fraternity wrote me off when I needed them the most.

[210272 in reply to MariaBanelli]

Oh my days, Maria - that's appalling and I'm not surprised you are fuming. I am too, on your behalf, since this kind of thing happens a lot for people with rare conditions. Anger can have a negative impact on our immune systems tho' so I wonder if it would serve you better to turn it into affirmative action by leaving this feedback on Hon Prof Stone's site? If you need to conserve your energy and body-swerve doing that, that would be entirely understandable. Another option would be to join the Rare Revolution Magazine Community and tell your story there but, again, if you don't have enough spoons, that's totally understandable.

Part of the problem with blood tests is that (at least in the UK) they are measured against a patient population, IE people who are not in the best of health so 'low but within normal range' means 'we have no idea how this would measure up compared to people in good health and there is also no quick way of reflecting how 'normal' has changed over the last 40 years or so.' 40 years ago more people were living in rural areas and doing work outside so would have had better levels of vitamin D. We were also eating more naturally then and not so impacted by pollution. Medics should know this and take it into account when looking at blood test results but often it's easier/cheaper to fob us off with 'nothing to see here QED it's 'functional'/'conversion disorder' or whatever we're calling it today.' Thank heavens you've found someone that knows what to look for and how to interpret your blood work etc.

I curse the person who did the code-word thing at you ... that is every level of wrongness imaginable and probably plenty more.

[RoseFlowerDew]

I know this is an old thread but wanted to say I paid for a private neurologist appointment for new seizures and pernicious anemia neuro complications (after 8 years of NHS failings) only to be told it was FND. Have since discovered that my seizures are controlled by calcium (unknown reasons for calcium deficiency at present) and I was severely under treated for B12 deficiency, vitamin d deficiency etc. Like others GP suggested counselling for aches and pains which turned out to be vitamin D deficiency related. It seems once misdiagnosed the labels stick and it’s very difficult to get overturned.

All NHS promotions for CBT therapy instead of checking for medical disorders is not only inefficient and ineffective it’s highly negligent resulting in permanent neurological disability or worse. Anyone given an FND diagnosis I would urge to think seriously about ditching the doctors and seek better informed medical practitioners….as the consequences aren’t for the consultants but by patients and their families. Also note the recent conviction of fraudulent doctor by the courts and that with a bit of research there’s a general understanding that it’s not an isolated incident.

[210272 in reply to RoseFlowerDew]

Thanks for the update, RoseFlowerDew and I hope the treatments you're using now to reduce the seizures and other symptoms are helping to restore some of your quality of life. I've heard from several people with pernicious anaemia who have accessed their notes and found 'functional' in them when it wasn't mentioned during their consultations. If 'I will discuss what I will write with my patients and write what we've discussed' was enshrined in the Hippocratic oath I think it would save a lot of time for everyone.

I also think we need a large scale public enquiry in the UK into how, when and why the FND dx is given since we know 'dustbin' diagnoses are being given far too frequently and reporting a misdiagnosis (including of Conversion Disorder) seems to be far too difficult so I suspect all the misdiagnosis stats are 'out'. I wish I'd known about the recent parliamentary event since there are many people with rare conditions whose diagnostic odysseys are prolonged and made more difficult by vague psychiatric labels being given to them along the way, often via their notes rather than their consultations.