Functional Neurological Disorder - FND Hope
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Simply can't accept that this is a real diagnosis

Hi everyone,

Some initial thoughts (and a bit of a rant) on receiving this diagnosis.

I don't mean to offend anyone and am having a perfectly natural reaction to what is essentially being told 'there is nothing we can do, live with your pain' and basically wait for ever to get a dubious bit of help and validation. (Which may or may not help.)

Firstly, I think it is more comfortable for professionals to label people with FND than admit they dont know. It is lazy, patriarchal and egotistical. After all it's origins go back to Hippocrates, Freud, 'hysteria' and Conversion Disorder. (I'm surprised no one has been asked if they're guilty of sinning, or easily influenced bu the supernatural, particularly women.)

Secondly, I shudder at the amount of people being added to the FND Facebook groups daily. It seems to me that people in our society are becoming sicker and there are more and more medically unexplained symptoms. (Even if FND is supposedly different and is meant to be diagnosed on positive signs.)

Thirdly, here in the UK, I find it very worrying that people are clamouring to see one ot two named specialists in this condition therefore making already ridiculous waiting lists even more insane. Why aren't more young neurologists training up and becoming specialists in FND if it is a real condition? If there is so much cutting edge research taking place, why are there not more neurologists interested in this condition and available for us to see?

Instead people are pointed to other helpless and vulnerable people for 'peer to peer support'. While I understand that identification with others is valuable, from what I see there are hundreds of people in the UK not being heard, taken seriously or receiving help and living with shocking pain and disability. It's a national disgrace.

For those that have felt the benefits of having this as a diagnosis, I wish you all the best. I'm envious of the comfort it brings you. Personally speaking, I reject this as a Dustbin Diagnosis, maybe that will change.

Thanks for reading. Opinions welcomed.

Mic in Brighton (frowning)

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totally agree. I was diagnosed last week. Now Im thinking I must be mad as a hatter. If I wasnt stressed before, very stressed now.

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No, you're not mad at all! :)

Seems we are basically guinea pigs in this relatively new diagnosis. Sadly for us, our diagnosis comes at a time when the NHS is at breaking point. (Thanks Tories)

It also seems as though 'organic' illnesses will always take priority.

I read somewhere that how the diagnosis is delivered is key in a patient's response and recovery. From what i can tell, this is being hurled at people, myself included and many are left confused and feeling powerless. This is a disaster in terms of 'wellness'.

When I feel better, I am determined to get involved in some activism on this issue but right now am too angry to be of any use...and too sick.

I have found this and he answers some of my questions posed above in the first few minutes.

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This is crap

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which is crap ?

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Hi there Donandlisa I'm just curious what is crap ?

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I think FND is another word for doctors don’t know!

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Dear Mic67

Hello and its great to meet you, well said and i totally agree with every single word you have said.

There is way more going on with this condition.

But try ti fight the doctors is impossible your accused of being depressed.

We have got to fight this and that is exactly what I intend to do.

you rant away thats what were here for

tabe 'lives in kent'

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Thank you for your reply Tabe! Great to meet you too. Look fw to being in touch. :)

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I completely agree with everything you have written. Since my daughter received this diagnosis last week I have trawled through endless websites etc. Doctors need to hold their hands up and admit that they don't know the answers. I do hope that you are able to receive some help .

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Thanks for your reply Grannycook. So worrying for you as a mum. I did find the video above helped me as well as another video sent to me by Lucy this morning by the physio Glenn Nielsen. Even though there are only a handful of them so far, it is encouraging to see people committed to helping us all. I must admit I was reeling from the way I was diagnosed when I wrote this post!

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If they professionals, don’t have answers, and we are just left to improve ourselves, no cure, what hope have we got. I was one of the lucky ones, 17 months of abysmal treatment by professionals, at every appointment that we had to push for or go private with borrowed money, told time and again I have anxiety and depression, I certainly did not have it when I started this journey. Yes I did end up with it as no answers and unending pain, no help other then more anti depressants thrown at me by the bucket, only to get to one of the leading specialists in the country (who was extremely nice and not patronising) to be told there is no cure yet, but we can teach you to manage your symptoms. 6 months on from then inpatient at London hospital for FND for 1 month. Don’t ever get me wrong I’m grateful for the help I’ve had. The hospital in London on the neurological ward is one of the few in the country leading the fight for us with FND. There were 6 of us at one time only, 1 off the patients refused to believe she had it and poo 💩 every thing they said, waste of her space as she didn’t want their help and said she was better off at home with her husband helping her. She tried to get us to agree with her sentiments but I was there to get better and get on with the life I had. Cannot fault the care I received, advice, knowledge to take with me. 10 months on, major relapse, got out folder off everything to start again. There is no follow up, no money in nhs, thanks again conservatives. Next week follow up for pip as have improved (no doubt) but face having my money stopped as have improved. Techniques, when dragging leg, limping, foot turned in, place heel down first. Am not walking further but not dragging leg behind me. Driving causes seizures still, try next year, overwhelming fatigue not going away any time this year, hopefully next year, this is how we live our lives now, hoping next year will be better, we can rejoin society in some way no matter how small. Family and friends getting on with their lives, I’m no longer part of that either, as I look well the derogatory comments to my face or to my partner who has lived this journey with me are no longer acceptable. Even my own mother says I’m weak, I don’t try hard enough, I just accept this Illness and sit on my expanding arse and expect to be paid. (She is a Tory through and through) it’s the ones with small children or any children at home watching their parents struggle, my daughter and grandchildren left so many times in tears 😭 I’m no longer in their lives as I was. Everyone has moved on. Tired now. Best wishes to all, and our never ending struggle.

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Thank you for your reply and I am so sorry to read of your struggle and relapse Leesaloo. I am managing to carry on working part time as to be honest, I have a phobia about freaking PIP and ESA assessments. I think I would lose my shit with them these days.

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Thank you for replying, unfortunately getting angry I can agree with but I end up in seizures, they ask questions but won’t give me time to think and answer them, I become totally muddled, go into agony and shutdown. It’s embarrassing, degrading but the money is my only independence to pay my way at home, anyone with common decency would understand, but the ones who work in pip have never heard of FND either and are totally uninterested in reading paperwork provided by us. The disability world is certainly a cruel on with mine fields everywhere. You have to be mentally competent to even get through the appointment. I’ve worked all my life to be now treated as a sponger. I desperately want to join society again, I hate isolation, loneliness is a killer and I totally agree. All mt best wishes.

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totally agree with your rant I totally get were your coming from you are so right on how they simple call it fnd and no help is given got diagnosed 2 years ago now still no closer to help or yet to have a doctor that totally understand fnd I have other medical problems which are making things alot worse my neurogist has found alot of lesions on my brain and lesions attacking corpus callosum they first thought I had ms.in my opinion they don't no what it is so I got told fnd and got sent home with a website disgusting how we all suffer in our own ways and face disability from this i was healthy like most of us had a job and went to the gym then I had some major surgery on my bladder has I suffer with fowlers syndrome which is also a rare condition I had a neurostimulater fitted it moved many of times which meant four loads of surgery before removing if now I struggle with walking tremors the list could go on but as we all no what we struggle with on a daily basis I wish you well im sorry you are struggling like most of us on here to get help and find the doctor that nos and helps witj fnd sufferes it is one big joke

best wishes claire

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Thank you for replying Claire. I do wonder if they really know, particularly in your case when you have lesions and other serious conditions. I also have 3 tiny brain aneurysms but apparently they are nothing to do with anything?!

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Hi,

You have every right to be angry, but this is not a dust bin diagnosis. Until research was done then we were treated even worse - if you can imagine that. Don't put yourself in the bin either. You kind of have to focus inwards and build your own treatment plan. A lot of the advice on the FND hope website is from people with FND experimenting on themselves and finding what helps certain aspects. Also help controlling other conditions that are common with us.

After 5 years I have made a significant impact even though I've only gone on the attack this past year or so. I was reluctant to take high doses of vitamins and minerals to begin with. I just thought that they were expensive pee. They have helped though and have come out of a very dark place. Though I do have very bright yellow pee ;-)

Unfortunately I only made progress after I realised that my symptoms were FND (and a tiny bit of migraine without headache). I had such Parkinson like symptoms that I didn't accept it. I thought that I was if not suffering from Parkinson's then I was on my way to it. I had to have a second negative DAT scan and try sinemet before I could accept in my stubbornness that it was FND. That's when I went to the internet and listened.

I know how it is to look on the FND Hope website and see smiling faces and feel "bugger off I'm not one of you". I was angry, I was frustrated, I wanted my life back. It wasn't until things clicked and I had a realisation that I could make an impact and improve that my anger and frustration decreased.

If you have tried anti-depressants for pain and they have not worked try vitamin B6. Failure of anti-depressants is common if you are low of B6 - which is far more common than your doctor will think. We need levels of B6 behind our blood brain barrier up to 50 times that found in the blood so it will not work immediately, things take time to recover, and that goes for any of the supplements. Make sure you take the whole B complex as well as they work together as a complex. B12 and vitamin D are vital and so is getting enough sunlight (it makes vitamin D and serotonin).

If you've taken NSAID's for any length of time then you will probably have gut problems. It may have contributed to developing FND. I take B12 and D sublingually as I've gastritis from years of aspirin for migraine. Taking things like omeprazole can mean you may develop deficiencies too. There are arguments for and against. I've been taking milk of magnesia instead of taking omeprazole to resolve a possible magnesium deficiency. I would take it again though if I have serious pain that feels like an ulcer.

If you are not making enough serotonin it affects your whole body as you have serotonin in your body as well as in your brain. If you are low in serotonin then you will be stiff and have muscular pain and spasticity. If you have pain it does lower your mood. That doesn't mean that you are a weepy mess, it can be that you have anger, aggression and frustration. Been there, it's not a good place.

Don't feel upset that things that help depression help pain. It's neuro-chemical not a judgement on your pain. Your pain is real. It's exactly what you say it is. All pain whether from cancer, bullet wounds or FND is affected by things people consider as psychological. So do try some of the coping techniques. Don't bight the heads off folk suggesting an SSRI either - though I know there is the temptation.

It's not going to be one answer. No panacea. It's optimising your health in general - weird, but it does help. Only discuss your FND with people who understand - there are some GP's that do understand, it's just they are in the minority.

You need support. You can't "try" to get better - that will land you on your backside. You could go on to develop non-epileptic seizures if you don't stop pushing yourself if you suffer from the fatigue. Which is frustrating as this happens to people who do tend to be high achievers and who do try rather too much. You have to use wisdom rather than effort - which is great because we are everything but thick and even with brain fog we have more insight than most.

For muscular and joint pain maybe try magnesium oil. I found it works well, but I appreciate we are all different. I use it on the chest pain that I get, helps with muscular spasms and joint pains (if I take it regularly for that - not instant on joints), it works like magic on cramp. If you can get a TENS machine - they use them for ladies in labour so they can have a significant impact and they are drug free. There are things that may enable you to improve your quality of life.

This is not psychosomatic. Looking after your psychological health and surrounding yourself with helpful, caring people will have an impact. That's because it helps everyone, with ANY diagnosis.

And as for us chicks we tend to have higher incidence of thyroid disease - which comes with B12 deficiency, which in turn causes other deficiencies that effect neurological health and other auto immune diseases that put us more at risk too. So it's not surprising that we get this more.

Well I've written too much again. I get rather passionate about helping folk who are struggling. The stories on here can be heart breaking. We are not alone, but perhaps in some ways we wish we were. To give FND a name enables diagnosis, identifies people for research purposes, it stops it being called things like "conversion disorder" and other ideas that have been refuted, it enables us to help each other and identify commonalities, pass on things that help.

XX

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Thanks for this great reply thinkin. I have read a lot of your posts before I wrote my rant yesterday, whicch to be honest, was after recceiving the diagnosis in such a shitty way and spending too much time reading posts in the FB groups.

I have since listened to a couple of talks by Glenn Nielson and Prof Edwards and feel a bit better.

I was on PPI (Omeprazole) for 10 years but am slowly managing to come off it after being diagnosed with Gastritis and initially being thought to have B12 myelopathy. I dont seem to tolerate vitamin supplements too well but have started with an Iron spray and Magnesium and B6.

I have a question, I saw you mention Amityptalene in another post. I have been taking one tablet once a week when I need a good nights sleep, it stops me getting up to pee about 3 times and the restless legs i sometimes get. Have you ever taken it daily, if so, has it helped and does it make fatigue worse?

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Hi,

Yes I was initially prescribed 10mg of amitriptyline daily when I was first diagnosed with FND. It's an old fashioned anti-depressant called a tricyclic. It increases all the neurotransmitters available, in your body as well as your brain. It stops them from being reabsorbed strengthening signals. More neurotransmitters help, but they don't fully understand why. I took it for just 6 days on the trot and my everything improved, especially my walking. I continued to take it 10mg daily.

I then did a stupid thing and returned to work too early, literally a couple of weeks after the symptoms resolved. I started to run around catching up with all those jobs that I couldn't do before being too tired. My concentration may still not have been it's best. I had a massive relapse. I tried taking more amitriptyline to see if it would help me improve again, but it didn't. I just wish it had been spelt out to me more clearly that I wasn't in the clear by a long chalk - I was told I had to wait 6 months but I was afraid I'd loose my job and I suppose that was the concentration problems that we face with the brain fog. Probably didn't help that my sister died on the second day of returning to work and my shitty boss wouldn't let me have any time off. Not even an afternoon.

Anyway, without realising it the amitriptyline built up in my system and I ended up being very confused. I even walked out into the road in front of traffic. It took about two months for it to leave my system and then my walking etc really deteriorated and I ended up back in a wheelchair.

By all means ask your doctor if you can try it. Trouble is with this old fashioned anti-depressant is that in some people it builds up, in others it is cleared out of your system too fast for it to be effective and then there are some who are ok with it. It's just luck if it works for you. But please learn from my mistakes and if it does help don't go running around and catching up with everything, trying to be a super hero.

Good luck.

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Oops sorry don't think I answered your question. It resolved my fatigue, though I still had some but I wasn't sure if that was due to the fact that I'd hardly been moving for about 15 months. I took it at night so as the worse aspect of the drowsiness worked to my advantage.

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Thanks thinkin. This is really helpful, I have only taken it once or twice and it has helped me sleep. SSRI's have never worked for me in the past so I am not sure whether to give these type a go instead. I also saw someone mention Norytyriptilene, saying it had less side effects. I am a bit worried about taking anything regularly as I can't stand weaning off stuff. I think the Magnesium may be helping me sleep a bit better.

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Hi,

Just a point. When SSRI's don't work it may be that you don't have enough B6 so trying them again after you've been taking them a while. I take 500mg in split doses now - no side effects thankfully. I've found it on it's own has helped both my mood and movement.

I hope you start to feel some benefit soon. Nortriptyline didn't do anything for me, but we are all different. I've had one suggestion to maybe try a SNRI, but I've picked up so much on the B6 that I don't need anything. Progress at last! I couldn't walk without getting really depressed. It was weird the relationship between the two. I can even get sick now without feeling suicidal. I've actually got some quality of life. I think that the low mood and the fatigue are the most debilitating.

Good luck with whatever you decide to take. x

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I've just ordered some more B6, thanks to your advice and encouragement. I will try some whopper doses of this before reaching for medications.

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I too considered suicide, after yet another neurologist appointment, after paying private for others, to only be told yet again (we can’t help you) see you in a year. The seizures left me depressed every time and a year is a long long time staring out of a window after already doing that. Seeing on website after professor Edwards in London that I had 95% of symptoms was a relief, any answer for me was better then no answers. I gave all my medications to my partner to take to work as I knew sitting on my own, I would have taken them all just to stop the unending pain and loneliness. My new dr referred me to mental health, they rang to talk and waited on phone while I went in and out of seizures. I could still hear them although unable to respond. Professionals never realise we can hear everything they say while in seizures, they just think lights on no ones home I’ll say what I want. If you can’t see a disability no one thinks you have one. Love to all struggling but hopeful, tomorrow is another day. Xxx

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I haven’t been officially diagnosed but even the suggestion by my neurologist initially pissed me off, he told me it was likely I had FND and would progressively get worse. That fueled my fire to prove him wrong and when I did the triathlon fours months after that conversation I sent him an email with my ranking. I got fifth place in my age group and I had to rub it in his face. Haha, immature maybe, but it certainly did motivate me. Honestly I’ve hardly had any interactions with health care professionals where I didn’t feel like they were blowing me off, or treating me like a drug addict or telling me I just needed to eat more,I just stopped going, I spend more time with the chiropractor . What helps me is doing my own thing and trusting myself to manage my symptoms by experimenting and trial and error. I’m still convinced that my nerves or my spinal cord was damaged by a doctor ( i had a lump removed from my neck less than a week before I developed symptoms) Doctors have completely dismissed my theory, but nobody has taken the time to look into it either. I can feel that over the year and a half the left side of my body is getting weaker and now it’s impact my bones and causing them to rotate. But I won’t give up, I still push myself to exercise, stay on the diet for seizures and just be kind to myself. I missed a bike race last week because my symptoms were so bad, but I didn’t get all mad and frustrated like I use to. Some things do get easier with time.

I guess my point is that we can’t rely on doctors for a magic pill or surgery or anything really. They just don’t know, and yes it’s patriarchal bs. We have to do the research, advocate for ourselves, and talk to others who have FND. We can’t give up!

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Thanks for your reply, I am full of admiration for your stamina. I cant wait to leave behind this last few months of being passed round specialists.

I even had one spine specialist WRITE on my notes 'she has a tendency to interpret her symptoms'. WTF. No shit sherlock?!

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I can relate! My GP "fired" me for trying to find answers to my symptoms!

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You nailed it.

As far as "benefits of having this diagnosis," the only benefit I can point to is that I stopped giving a shit about what people say, do and (perhaps) think (though there seems to be little of that). I'm a little more compassionate, especially to those who are ill or homeless, but after 18 months of convulsions, seizures, difficulty walking, myoclonus and dystonia, loss of vision and hearing, having my mind and memory splinter and fail, and then noting that my family, my friends, my coworkers and the medical community have all abandoned me to deal with this alone (save for my husband, who I threatened with physical violence into marrying me), I've turned a corner and find myself just watching the world burn. The abject lack of care and compassion offered by doctors and society is heartbreaking, and when I watch people strut around with whatever power-based agenda they have, I relish the idea that they, too, could very well end up like us.

Last year when I developed FND, I was told to see a therapist. I did. That therapist charged me US$30,000 for 2 1/2 months of talk therapy. It's been over a year, but I finally got word from the regulatory board that they are going to pursue legal recourse. That's all great news, but this particular incident has not only left me so broke that I had to sell my house and most of my belongings and live on the road, but when I've talked about it with psychiatrists, they put in my record that I'm delusional. That, in turn, has surfaced in my disability insurance fight, with comments along the lines that nothing I say is believable because I'm delusional. So, not only is this disorder bad enough on it's own, but treatment seems to draw out charlatans who do little more than bilk us and our insurance (if we even have insurance). I feel like the day that I became ill, I transformed from human being into a punching bag that spills out money.

And so, I hide from society. I still go to doctors these days as I fight for disability insurance, but they do nothing more than infantilize me and shame me, and I look forward to getting a final decision so that I can just keep moving on until I die. The truth is, I've done more to improve my situation than any doctor or therapist. I'm still not functional. Worse, I live in fear of the law because the little bit of emotional and physical relief I get comes from psilocybin and THC, neither of which is legal most places (though that is changing).

It's insane that I had to trade a good-ish life as a capitalist drone for what has become a nomadic life of borderline criminality because, one day, I started having seizures out of nowhere, and from the very beginning, with my first ER visit, I was told that I was making it up, that it was conversion disorder, that it would go away on it's own, that, as I've come to understand and remind myself to accept, no one cared to even try, that I'm on my own.

I hope that researchers are able to make some headway with FND. In the meantime, it's not a diagnosis but a slap in the face.

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Thanks so much for your reply and your honesty. What a story you have. It is heartbreaking to read. That said, I am craving a nomadic life. I have never been a capitalist drone but do believe that society, and coping, is making us sick.

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The nomadic life is fantastic in my opinion. It keeps me away from people. Having an engine attached to my home leaves me with a constant sense of safety because I know that, if things get tough, I can just go someplace else. I do think it has a positive influence on FND: it gives my mind a regular challenge to adapt to a new setting, new people, new stores.

And it's funny... I recently learned that my great-grandparents were Romanian. Ever since, I feel like I'm doing my genealogical duty by living on the road.

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Could not agree more with you Mic67. We, as humans, deserve better, especially from those who are meant to help.

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Hi mic 67. My husband mike has been really poorly since 2014 with breathing, chronic fatigue, painful legs and difficulty in walking pulse brain fog. He was a very intelligent man who I could turn to easily for help and guidance. But now is very poorly, luckily he can still drive and we've changed our car to a automatic. We were told by neurologists that years ago this type of problem would of been seen as hypercondract. Someone who felt ill for no reason. You could be right that doctors are just changing the label to FND. And you are certainly right that there is not enough people out there who understand this condition. We've been told that mikes condition is like his brain has gone out of sync with the rest of his body .so whereas I move and breath automatically, mike doesn't he has to relearn all movements and even breathing. He is being seen by a physio that is trained in FND. When he went for his first appointment, she got him to pass a tennis ball from one hand to the other, this was meant to distract his thought process from his jerking movements on his legs. Unfortunately, he somehow stopped breathing and went as white as a sheet and became very disorientated. It was horrible to watch .it took him 45 minutes to get back to somewhat normality. This showed the physio that his breathing was out of sync and needs to be addressed straight away. Which is something I've been saying all along? The brain as you know is very complex and can change us if we suffer from trauma or stress, anxiety. We are expected in this day and age to do thing as quickly as possible and some people expectations are very unrealistic. There is so much mental health problems these days. Sorry if I've waffles on

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Hi and thanks for your reply. You didn't waffle at all and I'm so sorry to hear about Mike's problems, so very worrying for you both. Are they addressing his breathing problems now?

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Have you both looked into Dysautonimia/ Autonomic Dysfunction, PoTS, Orthostatic Tremor, Ehlers Danlos Syndrome and Mast Cell Activation Disorder plus aitpimmune diseases such as Lupus and Sjögren’s?

There are so many diseases and syndromes that are still very new to the medical profession and there is no money for research and treatments into these. It’s so much easier and cheaper for doctors to diagnose FND and related conversion disorders.

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Totally agree!!!!!!

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Your experience is similar to many and you will have to move forward with patience on a 'trial & error basis' after having a definitive opinion from an EXPERT FND neurologist.

This is worth visiting :

neurosymptoms.org

Brain plasticity is currently under considerable investigation including retraining the brain

fariastechnique.com

Non-surgical deep brain stimulation, and vagus nerve stimulation suggest there are novel cures over the horizon.

If you can get yourself to dancing or Tai Chi, even swimming lessons you may find benefit, but these require persistence and an expert FND teacher.

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This so true Don’t know what else to say our liffe is a miisery

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Don’t accept it either

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I agree with everything you said. I was pointed to neurosymptoms.org after my GP referred my case to a neurologist. My symptoms were upper back pain, headaches and peripheral neuropathy symptoms which were worse at night. He couldn't find anything wrong and labeled it FND. Weeks later I had flu-like symptoms for 3 days and now all of my symptoms are resolving. I feel much better but it has left a bitter taste in my mouth. I felt shaken, dismissed and defeated. This experience has ended my relationship with my GP. She literally stopped communicating with me after my neurologist appointment. I felt that I was given this FND diagnosis because they didn't know what was happening. They didn't even take bloodwork, just an MRI on my back which was normal. I am in the USA and it seems not all professionals are even aware of this FND label. I went to another neurologist for an EMG and he looked very puzzled when I mentioned it.

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Hi tamarava and thanks for the reply. Sorry to hear of your experience with your GP, disgusting! As far as bloodwork goes, it is well known that there are non-compressive causes of myelopathy and that any good neurologist should do full infectious, inflammatory, metabolic and vitamin panels of bloods, chest xray and possibly evoked potential tests in some cases.

I saw a hip specialist the other day who said there is far too much reliance on MRI these days and people are just discharged with loads of symptoms on the basis of clean MRI. I am glad you are feeling better though.

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I was misdiagnosed with 'conversion disorder/ FND' 5 years ago. I continued to get worse and worse.

My symptoms were- seizures, dystonia, gait problems, balance and co-ordination. I was diagnosed with CD/ FND after 2 hours of being in A&E. They didn't ask any questions about my general health, medical history (I'd previously had similar symptoms a few years ago which were recognised as neurological by ENT). And had they bothered to check my medical notes- they would have seen that a month before being admitted to A&E I'd gone to my GP with swollen joints and flu like symptoms.

2 neurologist diagnosed me, based on the fact I have a history of mental health issues. I was treated like I was stupid, a hypochondriac.

I was sent home with a link to the neurosymptoms website. They didn't even bother explaining what FND was!

I actually now have the correct diagnosis of chronic NMDA receptor encephalitis and relapsing Sydenham's Chorea (from undiagnosed Rheumatic Fever). This is what was causing the movement disorder, seizures etc.

I long suspected the periods of inflammation and illness were causing the sudden onset of neurological symptoms but nobody listened to me.

I am livid over this mis-dagnosis. I was desperately ill for years and because I had this diagnosis on my records no doctor would even consider examine me or allowing me a second opinion.

I've sustained permanent brain and vision damage because of this diagnosis.

Even my new neurologist said that this was a gross misdiagnosis, and even possibly negligent.

And it is pure prejudice to diagnose someone with FND based on a history of mental health issues. They didn't look past my diagnosis and consider something medical was going on.

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Lily, this is shocking to me. Total and utter sexism, discrimination and ignorance. I would be livid too. I wonder how many of us there are for which this is the case.

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I'm in a group for others with my condition, and there are many many (mainly female!!) who were misdiagnosed with conversion disorder/FND.

I don't buy that it's no more misdiagnosed than other conditions.

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I agree. Seeing how many people are added to the FND Facebook groups each week is shocking.

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Have you all looked into Dysautonimia/ Autonomic Dysfunction, PoTS, Orthostatic Tremor, Ehlers Danlos Syndrome and Mast Cell Activation Disorder plus aitpimmune diseases such as Lupus and Sjögren’s?

There are so many diseases and syndromes that are still very new to the medical profession at large and there is no money for research and treatments into these - certainly in UK. It’s so much easier and cheaper for doctors to diagnose FND and related conversion disorders - and set up websites and get funded PHDs to support this area - which I would describe as pseudo science of the same order as the US “Betrayal” series. I feel we are probably being betrayed by all sides.

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