Functional Neurological Disorder - FND Hope
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Question everything

Hi,

I don't see enough questioning of this shadowy diagnosis

, I don't necessarily mean on here, but certainly on the FB groups people seem to have just sucked it up and been sent on their not-so-merry way. The stories of suffering and abandonment are heartbreaking.

For those that like to read, and who remain suspicious, I found this brilliant thread on the Phoenix Rising ME Forum.

forums.phoenixrising.me/ind...

Question everything.

Mic

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I have a question to ask before I forget Mic. Is there a difference between FND and Parkinsonism do you know?

Re your link. Yes It’s good. And I’ve decided that my neurolgists have actually given me a conversion disorder and maybe I should thank them for it rather than continue to curse?

I mean I never planned to walk like a drunk, dye my hair pink for the first time in 35 years or buy myself a very expensive pair of patent leather boots I can’t afford.

I was just about doing okay with hair going white, boring attire and had resigned myself to living with autoimmune diseases as best I could.

But since FND arrived on the list as my latest diagnosis, I’ve decided to play dragons den and say “sorry but I’m out” with this idea of FND and opt instead for reckless abandon on the basis that, if we can’t beat them we should join ‘em?! I’ve also decided to diagnose the 3 neuro’s I’ve been under with FNB. Functionalist Non Believers - or standing for something a tad ruder perhaps? 🤷🏼‍♀️🤗

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Good question but I am not sure of the answer re; Parkinson's Twitchy. I think there are a lot of people who are diagnosed late as there are often no brain changes on scans early on, like FND?

So many things struck me in this PR thread. I felt less isolated and alone despite not having ME. The main fascinating fact is that if there are 'changes to neural pathways' in FND then surely that blows the psychogenic/non organic theory out of the window?! Anyone else have an opinion on this?

Also, this whole thing about 'you have to believe in your diagnosis to get better'. Hmmmm, a bit cult-like.

I was also struck by the fact that. with FND, everyone's symptoms are so different that there isn't much solidarity in numbers to question it. In addition, many are either too sick or have been blinded by the mystery and pseudo science the diagnosis is shrouded in, that no one is mobilising and rising up to challenge it. That disturbs me.

What I imagine is that most people are feeling severely depressed and hopeless after being given a label that smacks of victim blaming and are left digging around for trauma.

PS If FND has made you go pink it has one redeeming feature. :D

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Yes well you know my thoughts are as cynical as yours on this Mic. But I ask because, when my tremors and vibrations began, around the time I had a nasty cold in January - I phoned the Parkinson’s UK helpline and was referred to a neuro nurse helpline on the Brain & Spine Foundation. I described my multiple symptoms (which do match the diagnostic criteria of FND to a tee) and the Neurology nurse explained that this sounded to her like Parkinsonism relating to my Sjögren’s rather than Parkinson’s Disease. FND was certainly never mentioned.

My youngest son (art student) is devastated that I’m planning to go for pink hair with ginger streaks. I’m trying not to consider his point of view. I just really fancy walzting into my next neuro appointment in December with neon hair and shiny boots and my most fancy customised walking stick and thanking her profusely for liberating me from dysfunctionality and turning me into such a functional being🙄🙄🤸‍♂️

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Agreed! I think FND is a dangerous diagnosis. I know of way too many people who were given this diagnosis who eventually went onto being diagnosed with a serious illness. And the diagnosis prevented them from getting the proper care. One guy I know ended up in a coma and nearly died!

I honestly think in the future there will be a back-lash from people (including me) who were diagnosed with this condition, who eventually found out they had something seriously wrong all along.

I am so happy to see more people questioning this 'diagnosis'.

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Only 3 of us so far Lily - and I may decide to say “sorry but I’m out” in favour of becoming functional with gorgeous plumes. No one has ever called me functional before - I’m rather touched❣️ 💃🏻💅🏻🧛‍♂️👩🏻‍🎤

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Omg, the case on that thread of the poor woman who was diagnosed with 'conversion disorder', but she died of prion diseases, makes me sick!! Those doctors are abusers.

And they accused of of having 'facetious disorder' too. 'Conversion disorder' is a misogynistic, unscientific diagnosis.

"Sharpe was also the senior author on a meta-analysis published in the BMJ showing that only a minority (5-10%) of patients with a diagnosis of conversion disorder end up diagnosed with an organic disease explaining their symptoms. This is taken as evidence that the majority of conversion disorder cases have a non-organic illness.

But this argument is totally nonsensical as it assumes that current diagnostic conventions and medical knowledge are complete and finite." THIS!!!!

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I know, hideous isn't it! Must be SO many cases like that. I'm raging.

Also this > aeon.co/ideas/bad-thoughts-... I'm going to order her book.

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The way they talk about her, saying she has 'narcissistic personalty' after this poor woman died of medical neglect, is appalling. (I think these doctor are projecting their own narcissistic personality!!)

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"How I found the underlying cause of my CFS--anti NMDA antibodies"

forums.phoenixrising.me/ind...

Check out this thread, this guy eventually found out his symptoms were caused by NMDA, same as what I have. This is what was causing my 'chronic fatigue/ conversion disorder'.

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ffs! I told my neuro I am HSV2 positive, he said 'this may prove relevant if we end up doing a lumbar puncture as it sits in the spinal nerves'. However, he never bothered doing a LP as he had already made his mind up about FND. This is all about money.

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What are your symptoms? Have you looked up NMDAr symptoms?

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I don't think I have many of the symptoms. My main neuro symptom is the complete inability to raise my legs (only when lying down though), a wobbly walk, shoulder pain which is being investigated, severe fatigue and brain fog. Also some depression which is related to this shitshow of the past year.

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Try this link and see what it is we need to find - a doctor with FND! info.sjogrens.org/conquerin...

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Yes, although if a Dr had FND they would probably manage to find out what is causing it! I also have no faith in a lot of these blood tests. I am surprised that neuro-immunologists take them at face value when so many patients are sero-negative. It is also widely known that it is impossible to rule out Lyme co-infections from the one test they do in the UK.

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I had Lyme excluded by lumbar puncture apparently along with MS and other stuff. They still managed to pass off the fact that I had matched ologliconal bands - which is not normal. Finally my ANA showed up positive and I had a lip biopsy confirming Sjögren’s. But still my extra symptoms have been passed off as FND. I bet the same would apply to those with Lyme as it does for some with diagnosed MS and Parkinson’s.

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I think any psychological element has been taken out of the diagnostic criteria for FND because it has become so irrelevant. We are the nomads of the neurological world.We don't have a foothold anywhere. No clear paths or structure. Basically up the river without a paddle. That's what iv'e learned within just 3 weeks.

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It's been taken out of the criteria, however sadly Freud's hysteria ghost still lurks in the shadows, everytime someone presents at A & E or even goes to their GP.

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It's funny. When I went to my most recent psychiatrist visit, I looked at the doctor square in the face and asked, "Tell me. Just how many of Freud's ideas do you continue to regularly use beyond conversion disorder?" She paused with a look of shock and said, "Well, conversion disorder is still sometimes very real." She went back to bullying me after that, but I felt emboldened by knowing that no real psychiatrist or psychologist still gives Freud any merit. Except when it comes to the dust bin diagnosis of FND. Then? Well, Freud is a genius.

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Great point! Hate bullies but doctor bullies are the worst!

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I love that you said that to her! I have watched two talks this week from the Freud institute in London on FND. The only one on the panel talking anything about remotely from this century was Dr Edwards.

I am a support worker and ex journalist and have walked alongside traumatised refugees and people from all over the world, none of whose brains stopped misfiring!

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That's really interesting. Day after day, I sit here wondering where I went wrong. Okay, sure. Working backwards in time: 1) I'm post-op transgender. That alone puts me on everyone's shit list. 2) I worked in a very stressful field (software engineering). 3) I was an avid runner and body builder for years, putting my body under a great deal of stress. 4) I was abused as a child, the victim (or survivor or whatever) of incest. 5) I've had lots of viruses resulting in high fevers. 6) I have severe arthritis with significant stenosis and spinal cord compression. 7) I've been in several car accidents. 8) I've witnessed a lot of violence in my family and had to endure the suicide of every male in my immediate family.

Was it stressful? Yes.

Am I somehow unique? No.

Last night, I had quite a fit. All I remember is telling my husband that I would love to have my life back. I won't deny that I was drunk and stoned, but I'm like that a lot these days. I loved the stress of my job. I loved who I was. For the medical community to even suggest that I'm making my symptoms up or that they are somehow the result of having experienced symptoms in the past that I'm now manifesting for secondary personal gain makes me waffle between homicide and suicide. It's ridiculous. The US government's response to my application for disability insurance says that I'm severely physically disabled, but because of my intellect and, oh yea, the fact that I used marijuana for pain, means that I can get a job as a bookie or a "paper cutter" or a "paster." Those jobs haven't existed, legally, since the late 1930's when Social Security was founded.

Your comment is interesting because I *do* think about people who have been through far worse than I have and are now political or social leaders. The idea that I, personally, have been through a lot and am now just little more than human waste is disgusting to me. I put up with all of the shit in my life and did it well, and then LITERALLY one day my life changed. I mean, it was INSTANT. I was hobbling along on a cane in the cold, waiting for my upcoming hip replacement. My foot slipped on ice. I started convulsing. And that was it. I can barely speak now. I can hardly think. I definitely cannot read like I used to. I can't work. Somehow it's my fault? Really? There's no organic cause? Anyone who thinks that needs to come tell me that to my face and see what a 275 lb. transgender body builder and black belt can do with her fists.

I really do wish I could do more. Something broke in me, and despite my intelligence, tenacity or skill, I can't fix it. That's all I know.

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Oh gosh, I cant even imagine the stigma. Your life must be unrecognisable to you. You reminded me of Maya Dusenbery's book, she taught me about 'Trans broken arm syndrome' and I researched it. Disgusting. pinknews.co.uk/2015/07/09/f...

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Such a very intelligent and brave account you’ve given us of your situation.

There seem to me to be so many parallels between the issues around the world (but I’m in UK) surrounding transgender equality (or inequality) and the toxicity of debate on this issue going on here right now - and the plight of those diagnosed with FND and related disorders. I would also say that in UK the current Brexit debate and the extraordinary events going across the world seem to be paralleled and also to be influencing the way that neurologists (and perhaps psychiatrist’s and many other doctors) are able to get away with diagnosing FND without any real scientific evidence - often just on no more than whim and circumstance?

This isn’t at all new either. I recall listening to a bbc radio autobiography/ biography many years ago - being read by the writer - a man who had lost his wife to what later became known as ME/CFS - when she drowned herself in the bath just before her daughter’s wedding day. It was a truly heart breaking story written and told with great tenderness and insight by her writer-journalist husband.

And this was an amazing eye opener for me - who now has a hard won diagnosis of organic autoimmune diseases. But most of her symptoms are now mine and I’m being told this is FND or functional overlay. I can and will try very hard to use my blood and spinal tap results to prove otherwise. But when up against a large medical establishment it won’t be easy, even for me.

And I come back over and over to the thought that all medical doctors are required to swear to uphold the hypocratic oath to “do no harm”. So how can Doctors think it’s morally or even legally acceptable to diagnose anyone with a medical or psychological condition against our will? And yet somehow this quackery and bad doctoring seems to be going on and on completely under the radar (due to such high profile world events) across all of our societies.

It honestly seems to me to be the “one flew over the cuckoo’s nest story with all diagnosed with FND as the miserable, disabled and bullied inhabitants of the proverbial cuckoo’s nest? “Do great harm” seems to me to be the truth of what many of these doctors are doing - the reality no one who is well wants to hear.

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I'm still reeling from your observation. It puts doubt on the ever-present claim that stress causes FND. Sure, it might exacerbate it, but the mere observation that there are people who have clearly "had it worse" and don't exhibit symptoms of FND suggests that the underlying mechanisms aren't strictly stress related. Indeed, as the research tills the soil, it's turning up the fact that people develop these symptoms without ever having faced a traumatic life, which has been the gold standard for why people get this illness. "We" (and I mean researchers here) need to put more energy into tracing out how these symptoms arise, independent of "root causes." I'd be happy to have treatments that deal directly with symptoms and am frankly sick and tired of having to "prove" that I'm ill because the battery of standard tests don't show much. The search for root causes can go on independently because suffering is suffering, however it was caused.

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I was told that 'stress' caused my FND.

But actually I was having an NMDAr encephalitis flare up. I'd had extreme stress for most of my life- but only now I start to get FND/ conversion disorder because of 'stress'?

During a flare up, tress can trigger a seizure, but that's because my nervous system gets overloaded. Plus, prolonged stress can weaken the immune system.

I was also told that my FND was caused by trauma. Thank god I didn't listen to them.

I think we need to start looking at viruses and infections.

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I couldn't find your question asking what viral infections I've had, and I don't mind sharing because it could be important.

When I was under 5 (probably 3 or 4), I got a really nasty flu. Everyone was worried. It's probably part of why I'm morbidly obese now after having learned that the only "good food" involved adding sugar to every damn thing.

I also had pinworms. Okay, this is sick, but when I felt down, my parents used to make me sing this song: "Nobody loves me. Everybody hates me. I think I'll eat some worms." So I did just that. I ate dirt. I caught worms and was given this nasty, sickly sweet medication to kill them. I remember it caused significant stomach cramping, but eventually I was ridded of the worms.

When I was 20, I got chicken pox. Don't ask me how I made it 20 years without getting it. At the time, I was living with my parents. I had a fever of 105 for about 2 days. I remember walking into my parents room asking if they were aware of fevers that could cause blistering, because by the second day I was covered in them. My mom told me that I had chicken pox. It was absolutely horrible. I still have scars on my forehead, neck and ears from the pox.

A few years later, I got "something" that caused me to have fevers that would flop every hour between 102 and 94. I remember having terrible chills and terrible heat waves. They would come every hour like clockwork. 102. Then 94. Then 102. Then 94. I went to the doctor and was told to just take it easy and it would go away. It eventually did after about 3-4 weeks, but the lymph nodes at the base of my skull were swollen for about 20 years after. They made a visible bump on my neck.

I got a severe flu in my late 20's. My now ex-wife got it, too, and we spent about 3 days complaining to each other about our green diarrhea. Food tasted horrible for about another week. Eventually the symptoms passed. Doctors were of no help. We took 800mg of ibuprofen a couple times a day to deal with the fevers.

In my mid-30's, I caught an "adnovirus" or mono. I don't know which. My oldest daughter, then 3, got it, too. Again, it was the same thing, but the fevers went between 103 and 94. I forced myself into work, despite coworkers' admonitions. I would be in meetings and go from sweating profusely to having chills and chattering teeth. Anyway, this lasted for 3 months.

Then, when I was 44, my husband got the flu. It turned out that he had H1N1 (swine flu). I wasn't having symptoms, but I went to the clinic to be tested. The doctor was shocked because she said that she'd never seen an H1N1 test turn positive so quickly. But I had ZERO symptoms. No fever or anything. Now, backing up a bit, around December of the previous year, I got a case of the flu that left me with rales (nasty, nasty breathing obstruction that sounds like pop rocks in your lungs). I went to the ER (or ED or whatever we're supposed to call it now), and they discharged me immediately, saying that it would clear up. It hasn't. I still have rales in the mornings until about 11am or so. I hack and cough uncontrollably, spitting up clear globular mucus. I now have a chronic pain in my upper right costal region from the constant coughing.

Viruses are problematic because there doesn't seem to be tests for them. Doctors would simply dismiss my issues and tell me to go home and get some rest. Rest results in reduction of symptoms, but I've never been able to shake any of the actual symptoms except the fevers. I cough constantly. These days, I convulse constantly.

I've had a lifelong issue with action tremors. When I went to the doctor at age 18 about it, he told me to have a little wine or alcohol to control them. It helps, but now they tell me I'm an alcoholic because I drink to control my tremors and they keep refusing to put me on benzodiazepines because of the risk of blindness. Well, I'll take blindness because I sometimes have an experience where my eyes roll back in my head and I cannot see for hours on end. I'm good with blindness if it means that the tremors and convulsions and seizures and all of my other symptoms would settle down.

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who apparently didn't even believe his own writings about Conversion disorder. So why hang onto outdated ideas that have been rejected by the originator of those ideas!!!

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Vive la revolution, but there doesn't seem to be anyplace to take the fight. Doctors don't seem to care outside of the handfuls of doctors that are doing research. Family and friends don't seem to care. In America, it has become painfully obvious that politicians only care about perpetuating the circle-jerk that they've come to enjoy. If I scream too loudly about this, I get put in a psychiatric hospital until I hush.

Until a wealthy and beloved person or a politician gets this and is public and vocal about it, I see few inroads into making people more aware of this than is already being done. But, if there's something that can be done, I'd entertain it.

What I do is keep living my life. It's actually fun now to see the look of abject horror on people's faces when I wheel into a store. When I open my mouth and produce nothing but slurred speech, or move, triggering massive myoclonic jerking, people stop dead in their tracks. Those with the wherewithal to ask what's wrong with me get my rather long-winded elevator speech about having a rare disease that doctors don't seem interested in treating, though they often turn away after telling me it's because I don't pray hard enough or because I haven't forgiven my parents for the abuse.

No one, outside of us who suffer and our caregivers, seems to give even one shit about this.

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I am guessing that I might have been on this journey for much longer than you guys so I’ve had to find other alternative coping strategies or else I’d have combusted by now.

Communicating all this so called functional hell through my visual arts practice is my way of keeping vaguely sane.

But I have always also had the luxury of having confirmed autoimmune diseases - for all the good it’s done me. Basically I should point out that, even with organic disease, they can still foist their functional stuff on top. The problem is all about power relationships and the determination of some doctors to ignore the “do no harm” aspect of the hypocratic oath they swore to uphold.

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I think i'll lobby the PM just in the middle of the Brexit fiasco. Take the focus of Europe for a bit. Get FND on the map.

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Yes, good for you Bobby. You know what would be interesting, would to see the statistics of how many people are being diagnosed with FND. From Facebook, it looks like a lot! I wonder if there has been a huge spike in tandem with NHS cuts. So much cheaper to say no one specialises in this condition and that there is no treatment.

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Spot on Mic67. Just a thought: there are other HU communities run by registered UK charities relating to neuro conditions eg Brain & Spine Foundation and National Tremor Foundation -with far fewer members than this one. Maybe for those who want to get this situation addressed and collect data on how many are being diagnosed it’s time to spread the functional wings and fly somewhere where people might want to know and actually help us?

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This is a great point Twitchy. I would be so interested in how the brain and spine foundation views this cattle herding and abandonment of patients and what their view is on the ''diagnosis''. Let's have a think about this!

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Follow and re-post this there? We can continue the debate in front of their charity admin maybe?

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Count me in to

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Commented here for now Bobby. Lets see what happens. healthunlocked.com/brain-sp...

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That's It. Right on the nail. We should be patting ourselves on the back for saving the Government Millions in NHS funding. We should at least get a mention in the House of Commons for our good deeds. The Health Secretary should at least take us out for brunch.

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I really like that Pheonix Rising forum. You can see how people have had to fight so long and hard against the system that they have all become experts in their own conditions and what helps them. They are jst a few decades ahead of where FND is now and have camaraderie and wisdom to share with each other. Hopefully one day before long, FND patients will rise up too and start to question the dismissive way they are being treated, all pointed to a couple of websites and a handful of specialists.

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I read this comment from a US sufferer of small fibre neuropathy - similar invisible stuff

“To be honest a lot of it is the insurance companies. Because neuropathy isn’t always “life threatening” even though it carries significant morbidity and can lead to an early death (falls, accidents, can’t feel snake bite, etc.) it’s triaged in a very low category compared to malignancy or stroke.

Thus neurologists are pressured to reduce insurance costs and “unnecessary tests” to be able to stay in network with the insurance company. That’s why a psychiatric diagnosis is the perfect solution, it puts the blame on the patient, prevents further testing, and gets the patient out of the neurology department which lowers costs. Takes care of the “annoying” patients.”

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I commented here in the Brain and Spine Foundation forum. healthunlocked.com/brain-sp...

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I believe they are referred to as ''Heartsink patients''. No joke.

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Well it works both ways because all my neurologists have been “heart sink” doctors - and they are being paid a great deal to sink our hearts eh?!

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My heart is literally in my boots.

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You need good strong shiny boots then - fit to kick the dr heart sinkers where it hurts most - ie in their inflated egos!

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Ive just posted on there for first time - feel free to respond!

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Done!

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Thankyou I will have a look , I still don't much about

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Hi,

It's based on science and not nonsense - fMRI based research where how the brain is actually working is seen. It's been helpful to many, but there are idiots still calling it conversion disorder and psychogenic despite this being refuted. When properly diagnosed it has a much lower misdiagnosis rate than any other neurological illness.

Yes, there are folk out there who have been misdiagnosed. Yes there are still too many doctors still treating us like it was a conversion disorder and abandoning our care. There is harm being done with the misuse and abuse, but that is not an excuse for treating our diagnosis in this way. We need to stick with it because if you don't like the FND diagnosis you certainly wouldn't have liked what was before.

FND offers us hope and is actually helping people. We need the medical profession to stop being c*nts towards us - that will take time and effort. Effort we need to band together for, not have people like you rip up at something based on evidence based research. For many, the vast majority, the diagnosis is right. To tear at it and offer nothing in return is ridiculous. FND was termed because it more describes what is happening in the brain.

For your information watch this space because Prof Edwards has being putting people with CFS etc through fMRI. We await his findings with interest.

For those misdiagnosed with FND, it in all likelihood was not an FND specialist. If FND didn't exist it would be something else they were misdiagnosing you with. This happens with rarer conditions where there is financial pressure not to carry out a raft of tests that would, for most, be negative. So very sad, but true.

People like myself rightly diagnosed are getting better and this attack I take personally. It should be the doctors misdiagnosing who should be on the receiving end of this vile treatment of us.

And twithcyytoes, yes FND does Parkinsonism to a tee. I had to have 2 negative DAT scans to make sure I didn't have actual Parkinson's as it imitated it so well. Even to the point I have tremor on distraction and although struggled to walk, I could walk normally on the stairs. Yes it is brought on by infection, inflammation, yes they are often minor like colds, flu etc. People with inflammatory conditions with which Sjorgen's syndrome is commonly associated with are common amongst us. So don't dismiss your diagnosis as there are things that can help. If I were you I'd take vitamin B6 to see if it helps, along with the other major two B12 and D. You can get better from this, but not if you disregard your diagnosis and the warnings that come with it. You could in fact get much, much worse.

I am not alone in this and that is due to the work of Mark Edwards and neurologists like him. There is much to do and you are not helping.

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Okay I completely understand where you are coming from. I get furious when people, including doctors, friends and fellow autoimmuners say “oh I have Sjögren’s too - it’s so annoying isn’t it having dry eyes? and my mouth can get rally dry too”. I ask if they have a proper diagnosis and it invariably turns out that they have not and clearly do not know that Sjögren’s is actually a serious systemic autoimmune disease.

My concern isn’t that FND doesn’t exist as a severe condition in its own right. I’m really not in a position to say whether it is or not because I’m only here due to having the label foisted on me for want of any other label to give it. I don’t believe I have it and I think we do know when a diagnosis makes sense to us and know when to trust the doctor who makes this diagnosis. I don’t trust my young acting neuro consultant yet and I suspect her motives are largely ambition related.

I also know people who agree with or willingly accept their diagnosis of Fibromyalgia or CRPS or ME or IBS. I wouldn’t but only for me - not for others who feel it’s a good fit for them.

But I can equally see where Mic67 is coming from because we absolutely must and should always question whether we do actually have any condition where the diagnostic criteria are still very arbitrary. We need to work out whether we trust the doctor making this diagnosis with help of others here. So I agree with the title of this post and applaud Mic for continuing to raise this point. It’s really important that we pick pick pick rather than just rolling over and accepting something that isn’t black and white.

In fact, similarly to my point of view about whether a person claiming to have Sjögren’s actually does have it properly diagnosed and knows how serious this disease is for many - it’s entirely in your interests that those of us here feel confident that FND exists and that we do have it and that we aren’t just being fobbed off with a non diagnosis by an overworked doctor who only uses this diagnosis in order to get rid of or belittle patients.

Whether it’s Sjogrens or FND or Lupus or UCTD or EDS, PoTS or Pernicius Anaenia or thyroid disease - once the other more glaringly obvious neurological diseases have been excluded - all the rest of the conditions I’ve mentioned above need properly funded evidenced based research in order to be properly acknowledged and treated.

For instance Ulcerative Colitis is now known to be an autoimmune inflammatory bowel disease but until relatively recently was in the IBS category. IBS is not a condition in its own right - it’s an umbrella diagnosis for any bowel issues doctors can’t find other causes for. I had assumed, until reading your comment, that FND was the same. So your contribution to this discussion has been really useful in this respect.

However if you really do want FND to be viewed as a serious scientifically respected condition with with its own unique mechanisms, rather than viewed in the way Ulcertative Colitis used to be viewed - then all the quackery surrounding it needs weeding out.

This won’t happen if every Tom, Dick and Harry neurologist hands out a diagnosis on FND for anything and everything they don’t understand?!

And posts like this and responses such as yours are also absolutely essential to getting it taken seriously by the medical community.

For myself I don’t need advice from you about supllimenting etc and I don’t need to have FND added to my existent diagnosis of Sjögren’s and Hashimoto’s and RA. I already know a lot about my autoimmune diseases thanks

Describing my resting tremors as Parkinsonism will do fine - or else just tell me what my neuro physio tells me - that I’ve developed some less than helpful coping strategies due to loss if sensation all over my body caused by small fibre neuropathy and rheumatic fatigue.

If you are adamant that FND is a real neurological condition then the last thing you should want is for someone like me getting diagnosed with it too!

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"So if you really do want FND to be viewed as a serious scientifically respected condition with with its own unique mechanisms - then all the quackery surrounding it needs weeding out. This won’t happen if every Tom, Dick and Harry neurologist hands out FND for anything and everything they don’t understand." THIS!!!!

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But if I'd have been misdiagnosed with a neurological condition/ disease/ illness, at least they would have acknowledged that something was neurologically wrong with me. Even if the diagnosis was wrong.

Being misdiagnosed with FND, meant that whenever I wanted a second opinion, I was refused, and even treated with hostility, because they were adamant that nothing was neurologically wrong with me.

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Thinkin, I am sorry you feel personally attacked by this post.

It was not meant that way and I think Health Unlocked is the ideal forum for us to discuss/debate our thoughts, feelings and ideas. Surely you must agree that it is perfectly normal for people to question ANY diagnosis, particularly one with so little recognition, support and with so much history - and ignorance - attached.

I find Freud's ideas of 'Primary and Secondary gain' totally offensive too, like most of us here, my life has changed beyond recognition.

I understand that research has taken place with fMRI scans etc but this needs to be widely distributed so it is understood by professionals and patients alike.

I find it worrying that there are very few helpful discussions on FND online. It disturbs me that one of the Dr's on the panel of FND Hope has only one lecture on You Tube which is called 'Introduction to Hysteria'. The descriptor of the video which was made in 2015 says, ''Dr ****** explains to the general public what Hysteria is and how we now understand and treat it today as Functional Neurological Symptoms or Conversion Disorder."

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It's alarming they are still pushing 'conversion disorder', especially when research like this is being done.

"An Emerging Culprit for Conversion or Factitious Disorders: Anti–N-Methyl-D-Aspartate Receptor Encephalitis"

researchgate.net/publicatio...

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And the point is that there are conditions such as Ellhers Danlos, Small Fibre Neuropathy, PoTS and Mast Cell Activation Disorder (MCAD) which are all still barely understood or believed in and almost impossible to be diagnosed with in Scotland .

So when FND comes along now I find myself wondering how on Earth neurologists can be sure it’s not one of these others - since they aren’t the experts who would diagnose them? And if Sjögren’s is as under diagnosed as it is - how many with FND might have this or CNS Lupus or Vasculitis instead?

It certainly is very easy to be diagnosed in Scotland with FND compared to any of these other rare conditions and yes I do find this very suspicious!

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Hi Mic,

Going to read that post right after this message.

My experience so far is if you question things, you do get abandoned by professionals. All I wanted from my neurologist was to listen to my symptoms and rule out illnesses. He diagnosed me with migraines for 5 years after me repeatedly telling him my symptoms don't match up to this diagnosis. It finally got to a stage where i was ready to end my life, unable to walk and bed bound. As soon as my GP referred me to an ME specialist, he sent me a letter saying i needed psychological input!!! Then went on to say he thinks some of the things I'm experiencing could be FND. When I questioned him in the next appointment he acted very aggressively and annoyed, and told me that because I don't agree with FND diagnosis to leave and be discharged from his clinic. I never said that i didn't agree, i just asked if he could rule out other possible causes. He arrogantly responded with "i know it's FND and i am not wasting NHS money on any testing. You don't think its FND so there is the door".

It's been a terrible 5 years of my life where I have been tested on so many levels. Ive spent months in bed feeling so poorly that I thought I was going to die. To this point im still waiting for some doctor to come along and tell me I have some terminal illness because of the severity of how poorly i feel. I've gone from competing and winning figure competitions to spending my life sick in bed.

I'm lucky that I have children to keep me going. Im unable to work, my marriage fallen apart, no friends left, and no support from family due to their own problems. I have no energy or feel well enough to be fighting the doctors, but when I have my moments of feeling ok, I try to do what i can to get somewhere with a diagnosis. My neurologist said he wouldn't diagnose me with FND, nor could i see an FND psychologist until I was admitted for at least a week to hospital and i felt backed into a corner and that rather than them test for other things that could be making me feel so sick, that they would just be looking for evidence of FND. This was later confirmed in the appointment.

I now have a new GP and an appointment with a new neurologist. Professionals stick together and have each others backs but my only hope is that this time they will listen and help me rule out other illnesses and if i have FND, give me the correct support i need to come to terms with this diagnosis and understand it and get better.

You have to be very tactful with how you deal with doctors etc as if they feel you are questioning them, they can quickly turn against you and even convince other professionals into agreeing with their train of thought (which is what happened with my Endocrinologist and he had never even met me!!!).

I can't say I will never give up, I take each day as it comes. If I ever feel i'm negatively impacting my children then I will have to reevaluate everything, as im only here because of them.

You are right, you need to question everything, it won't be easy and doctors won't like it, but at the end of the day it's your life, you are the one going through the suffering, you need answers, not only answers but justification. If I had left things as they were and listened to the doctors i'd still be diagnosed with migraine and I would have ended my life due to not just the suffering but the incorrect diagnosis and feeling I was not being listened to and thought I would suffer forever (bedbound, not even well enough to sit up in a wheelchair). How can I try to get better if I dont know what it is im fighting!? The amount of times i've had anxiety and depression as a reason i am unable to walk is ridiculous! Any type of mental health problem you have had always gets thrown in as a reason for your symptoms and professionals try to palm you off with that diagnosis too (basically because they have no idea what is going on!) I've sat in appointments where they say "exercise, it will make you feel better" mmmmm I would love it if I felt well enough to walk around the house and i've just spent the last 20 minutes explaining that a walk to the kitchen could leave me bedbound for days. Most doctors if they cant test for it, and all your results are coming back normal, then they start to put it down to mental health.

Question everything for sure! A family friend was told he had migraines, they never scanned him, then a couple of years later... dead from a brain tumor. If only he had the confidence to question and demand a scan, maybe it wouldn't have made a difference to the outcome, but at least he would not have lived with that question....if only I had ?? Some people put far too much trust in the professionals....they can actually be wrong.

My sister wasn't feeling right, a vein in her neck appeared, she happened to be working in a hospital at the time. All bloods came back normal. The doctor asked her if she wanted a chest x-ray to be sure as he could see she wasn't happy and because she worked there, he pulled some strings to get her one. Her own GP had previously said no to an x-ray and told her it was her anxiety!!! The X-ray showed a huge tumor on her chest. Thankfully they had caught it in time and chemotherapy and radiotherapy saved her life.

There's nothing to be lost from questioning everything, but ask yourself if there is anything to be lost from questioning nothing?!

As Einstein once said "question everything"

Xxx

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Wow, I am so sorry to hear how unwell you are, and how you have been treated! Really really hoping you get some proper help from your new GP and neurologist.

I read somewhere once about the concept of 'wellness' being dependent on autonomy and information, and I really feel that people with medically unexplained disorders have neither.

But in your case, it sounds like you haven't even had the comfort of having other things ruled out yet. Being shown the door like this because you have dared to question when you are so sick, is a disgrace. What century are we in again?

I hope you enjoyed the Phoenix Rising thread. In it, someone states that Neurology is the worst speciality for psychologising when they don't understand something within their own discipline.

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I’m genuinely appalled by what you’ve been through. I thought that the neurologist who wrote that she was “concerned” I had “heightened health awareness” was as low down a doctor as could be. But reading of your neuro pushing you out for doubting him is diabolical!? We hear so much on the news about DWP and PIP assessors dehumanising people and those with mental health problems being ignored by the welfare state etc. But rarely does it seem to feature on the news that doctors can actually give people conversion disorders by refusing to listen or believe their accounts of symptoms.

All most of us want from doctors is to be listened to and believed.

Honestly it’s like something out of a Margaret Atwood novel reading of these experiences!

I have mostly excellent but very overworked doctors who seem to like and believe me. But none of them are neurologists - these appear to be a breed apart?

If I were you, and if this hasn’t already been done, I think I’d start off by asking GP to run some blood tests for autoantibodies ANA, RHeumatoid Factor, inflammatory markers and thyroid. Also compliments, B12, Vit D, Homosteceine and folate. If you aren’t sure then could you request hard copies off your GP reception?

Then I’d go through all of these and check whether any are off kilter or low or high in range. It’s good to have a baseline so I’d be very firm about needing and having a right to these with your GP.

If you can then keep your composure and smile calmly with all doctors, hold their gaze, speak about how these symptoms and this treatment have impacted on your life - and request that your neuro starts from scratch with new tests including brain MRI and, if you can bear it, lumbar puncture. I honestly don’t think think any GP or neurologist can diagnose FND without running every one of these tests first.

If they try to play the psychosomatic card without running all of these tests first then tell them you will take this up with your hospital PALS, MP, the media - whatever it takes.

Don’t try and cow tow to doctors as all that will happen is that you will get walked all over again - this happens time and time again to those who think being ingratiating will help. I know most doctors have sensitive egos but trying to pander to these gets us nowhere in my experience.

They have to be so careful these days what with GMC, social media, court cases etc that if you show them you’re willing to do whatever it takes to get answers - even if this means putting their reputations under the magnifier - they should feel a bit a vulnerable. Even when they stick together they can’t evade external complaints etc forever.

Best of luck and stay strong for you and your children’s sake. Xx

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Hi Help4. Your post resonated with me, I was fobbed of for 17 months with depression and anxiety, migraines which I know I’ve never had as a friend suffered for years with them. Eventually with a lot of help I got to professor Edwards who diagnosed me, for me it was a relief. I had no smell, no taste, constant pressure in my ears, tremors when trying to walk, constant pain in jaw, one eye, shoulders, neck, foot turned in, left side weakness, constant non epileptic seizures, constantly asked at any appointment I could get. Has anyone close to you died, are your parents divorced, do you suffer from depression and anxiety. I certainly didn’t before this journey but I did end up thinking of taking my life just to stop the unending pain, disbelief from professionals, loneliness, housebound it just goes on. Was referred to 1 months inpatient program for FND in London last December. It was brilliant, professionals who actually listened, waited while I word searched, realised when I was struggling to answer, they also diagnosed glitches which I didn’t even realise I had. When I go to do something I briefly freeze. As only short program I chose help with walking, talking and thinking. Also exercises to help coordination, 10 months on I’ve had a relapse and am back doing my exercises, left side again not responding as well BUT I have had improvement it’s me trying to hard to improve that has set me back. In the program there was a lady who was unable to walk or talk, they had her talking in 2 weeks she was extatic, they unfortunately couldn’t get her legs to respond but she was over the moon to be able to talk. There is help out there but it’s accessibility is so damned hard to get it, you need all the help and support from everyone, I got lucky, a man my partner knows who’s wife is paralysed from the neck came with us to some appointments and really pushed for appointment with professor Edwards, without his help I would still be waiting. After spending 2 years crawling round bungalow it’s a relief to be able just to walk, not far but to walk. Now I just have to keep thinking to myself, next year will be better, sometimes it’s all we have left to us. My kind regards to all of us struggling on.

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Hi Leesaloo. I’m glad you feel you are getting the help you need at last and feel confident that FND is the right diagnosis for you.

However I just wanted to let you know that, when I read your the first half of your comment I immediately assumed that you were posting on a different HU community - either Lupus UK or Vasculitis UK, or possibly even Thyroid UK.

For me this initial confusion about where you were posting is very significant and I’m hoping it means something to you and to others here as well. And, if you are still being seen regularly by Professor Edwards at this London FND clinic, then I would be very pleased if you could pass the implications of this confusion on to them all.

Yes most neurologists, having run brain MRIs, taken lumbar punctures and DAT scans and nerve conduction studies, can feel reasonably confident that they have excluded the obvious and even less obvious neurological diseases.

But, bearing in mind everything I have learned from personal experience, and having read extensively about these symptoms you and others describe, there is absolutely no way that I personally would ever allow any doctor, no matter how apparently kind or eminent, to diagnose or treat me with FND without first having diseases such as CNS Lupus, Sjögren’s and Vasculitis, Hughes, endocrine/ metabolic diseases, certain rare forms of cancer such as Multiple Myeloma, the many genetic forms of EDS or autoimmune diseases such as Addisons and Graves properly excluded by specialists at the relevant centres of excellence.

Perhaps the presence of an organic (particularly the autoimmune ones) disease(s) could even be why your symptoms have relapsed - and why the woman who can speak still cannot walk? I just wonder whether these doctors and physios you mention etc aware of the full the gamut of rare/ under diagnosed degenerative, non neurological diseases that can cause exactly these FND kind of symptoms? This matters hugely to me because there are very effective modifying treatments for diseases such as Lupus and Vasculitis that would be used in conjunction with the therapies you describe.

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I have heard of other things you have wrote but only through reading on here. After having mri, ct scans, blood tests etc I was told there was nothing wrong with me, here is a bucket of anti depressants, go away and take them. I was very happy to get a diagnosis, professor Edwards did tests that proved to him I had FND if I disbelieved 1 of the leading professors in this field who himself had FND then I certainly wouldn’t have deserved any help and would be wasting valuable time and money that could be better spent on someone who just wanted to get better. I’ve paid privately for a neurologist to give me a greater occipital nerve block into my brain to help stop the spasms in my brain that would drop me to the floor in agony. No dr would send me to a neurologist as they were convinced I had depression and anxiety. To be left in agony, disbelieved, I clutched any straw that would help. The nerve block worked for me and I’m grateful to this day I had the chance to try it. Unfortunately the spasms dropped back down my face and into my body after that. I do believe in self help to a degree but when my daughter gets unwell she Google’s her symptoms and is petrified but what she might have that is only detrimental to her own health and my grandchildren. Sorry I think I’ve lost the where I was going with this, confused myself now.

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Leesaloo I’m going to stop posting here for now as I find it too exhausting because I have a systemic disease and my fingers have no sensation.

But to clarify - I’m not saying your professor Edwards is wrong - just that he may be so keen to help those who come to him or that people like you might be so relieved to have found somewhere and someone who will try to help you - that you’ve both accepted the idea of FND out of very understandable desperation?

I think I’ve had a much wider gamut of neuro testing than you because I had confirmed autoimmune diseases already - so I have had 3 Brain MRIs, 1 lumbar sacral, 2 cervical spine, a CT of my sinuses, 3 nerve conduction studies, a tilt table test, a barium swallow, a lumbar puncture and cameras up and down each orifice. Oh and a truly horrible vestibular testing thing in June!

Nothing much has shown up apart from some small vessel disease of brain, matched bands in my spinal fluid and blood, significant degenerative disc disease and a few other non specific things. Nothing that accounts for my tremors, weakness in my arms and legs, or twitches or sensory Ataxia apparently - which is why the neuro is trying to land FND on me now as well as my confirmed autoimmune diseases. I could and would accept this diagnosis but for the fact that I think the fatigue and insomnia are causing all these FND symptoms and my fatigue is part of a very active rheumatic disease called Sjögren’s. It has caused many neurological manifestations and for some it presents in this way so this is why is urge you to ask professor Edwards if he has excluded this possibility for himself and for you and all his FND patients?

If I say any more I’ll sound like a broken record from Dr Seuss’s green eggs and ham book - “I do not like green eggs and ham (FND) I do not like them Sam I Am”. There you go I’m officially deranged but this is because I don’t sleep for pain not because I have this FND. Of this I’m certain and hell will freeze over before I accept this FND for myself.

But now I’ll bow out and leave you to decide if you want to learn more about other possible causes of these FND symptoms or not.

Here are some very dependable and reputable links in case you or others want to pursue this question as Mic’s post urges us to do!

lupusuk.org.uk/medical/gp-g...

jnnp.bmj.com/content/86/11/...

Best wishes,

Twitchytoes

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"I had no smell, no taste, constant pressure in my ears, tremors when trying to walk, constant pain in jaw, one eye, shoulders, neck, foot turned in, left side weakness, constant non epileptic seizures"

I had the exact same symptoms- but I now know it's encephalitis (brain infection/ swelling). I had ear fullness and pressure and headaches, which was being caused by brain inflammation. And pain in my jaw and shoulders. Non-stop seizures. Weakness on one side.

No smell is a sign of bran damage, as is loss of taste.

2 neurologists misdiagnosed me with FND.

An audiologist and optician picked up on the brain damage and I ended up with the correct diagnosis. I'm now waiting to see a neuroimmunologst.

You know, you're the second person on here to say they have 'ear fullness/ pressure' as a symptom alongside their neurological symptoms. MAJOR alarm bells!!

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Over time, maybe a year maybe less, my smell, taste and pressure in ears went, I have no memory other then they came back. 2 years, in that time they came and they went, the symptoms I have today are still there, when I try to do to much they return with a vengeance. My symptoms I have still are thinking and talking are a struggle, word searching, if I try to walk to far I will struggle with limping, foot dragging, in hospital I was taught to always put heel down first this works really well for me until I yet again overdo it. It’s such a fine line between pacing and overdoing it. Constant fatigue is always there, but I can taste, smell and enjoy baths with bubble bath again. The small things make my life worth living.

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No smell or taste can also be a sign of small nerve damage of Sjögren’s - which often goes with EDS Lily! I haven’t been able to taste and smell anything for a few years now.😖 I also have ear fullness, hyperacusis and awful tinnitus 24/7. EDS????? Ugh.

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I did used to write to lady on here who diagnosed herself with Sjogrens but could not get a professional to agree with her, last I heard from her she was living in Australia and had given up. No longer replies to anything sent 😢

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Oh what a shame? I don’t really hold with self diagnosing but sometimes it’s the only thing we can do. Mine was diagnosed by lip biopsy which lots of people can’t bear the idea of but I have numb face and burning lips anyway and just wanted clarity - which I got. I have self diagnosed with hypermobility EDS because I fit all the criteria but no one diagnoses it up here in Scotland - which is why I don’t believe they should be able to diagnose FND in Scotland!

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PS the only HealthUnlocked community for Sjögren’s is Australian.

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She was living in Scotland but moved back to Australia where she was born to try to get a diagnosis. Was last I heard from her that still no diagnosis and she had given up. 😪

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I'm sorry, but it's not normal to lose your memory like that. I had huge memory loss from the encephalitis.

Literally all your symptoms are identical to mine. Word finding, fatigue, foot dragging etc. My symptoms came and went over time. I realise now that whenever I got ill, even with a minor cold, symptoms would flare up.

I've been diagnosed with chronic NMDA receptor encephalitis.

I had symptoms like yours, for about 10 years, and when it progressed to seizures and I was admitted to A&E, 2 neurologist a few months apart mis--diagnosed me with FND.

Ask for a second opinion. Ask to be investigated for encephalitis.

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I was taught the heel down first thing too and I do agree it’s helped. Starting hydrotherapy (4 sessions 45 minutes drive away!) next week.

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