Functional Neurological Disorder (FND) - an introduction

An introductory film about the diagnosis and treatment of FND completed in December 2018 by the Dutch film company iTZiT productions, with grateful thanks for funding by Spohr Innovations.
The film has been designed to describe what FND is (particularly functional motor symptoms like paralysis and movement disorders), how its diagnosed and how treatment can help. Features: Marieke, Rachel, Simon, and Rien Vermeulen (Neurology, Amsterdam), Jon Stone (Neurology, Edinburgh), Alan Carson (Neuropsychiatry), Bart van Buchem (Physiotherapist, Amsterdam). With thanks as well to Stichting FNS, FNDHope, NHS Lothian, University of Edinburgh and Fysiotherapie Haarlem - Praktijk Noorder Spaarne

[@mammadeuces6242]

I was just diagnosed after fighting for 20 years. I’m so overwhelmed. The burden of not knowing is greater than knowing 🙏🙏

[@maisasally-annaperk3786]

Congrats! I was already going down the spiral for being without a diagnose for 8 months don't even want to imagen 20 years. Congrats!

[@susieq8008]

The big question is ...Now What ? My youngest son is suffering horribly with this disorder n I haven't a clue.

[@lisasmith1332]

I totally understand!

[@PeasLivesMatterGivePeasaChance]

I’ve dreamt it I just need to hear it !!! 😢

[@zoefitzpatrick6644]

After 3 years of on going appointments I have finally been diagnosed today with FND. I honestly felt like crying cause they've finally found what's wrong with me and now I now what to do to help it 😊

[@alexisdumais5430]

hey! do you improved?

[@SiothaVest]

And did they actually help?! We've seen 5 neuros! All point to psych. Our psych had never dealt with this... and now they all just run circles humiliation and loss of hope

[@peachiichiba7903]

I am so happy to see this. I have FND and its so so hard

[@fastrivers812]

Mr. Stone, someone recommended your work in a social media post. My wife was diagnosed with Conversion Disorder around 2004 at Mayo Clinic. She was having tremors that were seizure-like. They recommended that she go to counseling and she went just 2 or 3 times and stopped because she didn't want to be psychoanalyzed and that her tremors stopped. Now, so many years later, she fights battles of frequent migraines that she says comes on by her sinuses (allergies), smells, beef, etc. We spent tens of thousands of dollars in tests and the doctors couldn't find anything. She'll say things like, the mold in the A/C of the car is making her sleepy or giving her a migraine. I have asthma, if I get into contact with mold, I have an immediate reaction and can't breath. This never happens in the car. Any time I try to ask if she thinks it's FND, she gets offended. Can FND manifest stress into migraines? If so, what can we do?

[@lcarrick6686]

It breaks my heart to see all who suffer with this and yes it is harder not knowing than knowing; at least knowing gives you a fighting chance. The evolution can be complex and even the best neurologist can be confused by it. As all have described, it takes years sometimes to find someone familiar with fnd and how to test and what to look for. It’s a hard dark road but light in the distance. Thanks for sharing your experiences. It gives us hope.

[@marymilliken2868]

My daughter has been diagnosed with FND with attacks and seizures with Hx of TBI. We have been to so many providers from neurology, psychiatry and on and on. In a 45 day period she had over 60 seizures (total exhaustion) no one could help. The one thing we have found to be helpful is an extremely low carb diet. But this is hard to maintain. Thank you for your videos, helps knowing we are not alone on this journey.

[@SatumainenOlento]

Yes! That diet seems to work wonders on autoimmune diseases as well! If nothing else, it is good to give it a try!

[@MegaCheater101]

More research into treatment options are needed.

[@Lentilboots]

Helpful video showing a lot of symptoms and experiences that I had! After 6 months of unexplained weirdness the right neurologist took my history and identified Hoover’s sign so I got diagnosed :)

[@rubix110]

This condition has touched my family recently. The explanations in this video are very helpful. However in our case, we are observing more memory problems than motor issues. We look forward to learning more as time goes on. Thank you.

[@TheShinedown09]

rubix110 I have memory problems too wose the motor some times. Hope helps 💚

[@bxstar5276]

The memory issues come and go like the physical. I don’t believe it’s perm damage

[@joycewesdorp2473]

2012 voor het eerst deze aandoening. Arm been links aangedaan , praten erg moeizaam , zo ook het vinden van woorden . Toen depressief waar ik 4 jaar hulp in heb gehad. Ben die vrouw(psychologe) zo dankbaar.( Goede klik is zo belangrijk) langzaam kwam ik terug. Toch weer aan het werk gekomen maar helaas nu 4,5 jaar later weer dezelfde klachten. Ga dus weer hulp zoeken want zoals hier in de video weet ik dat dat zo belangrijk is. Het is moeilijk maar n ieder die hiermee worstelt , schaam je niet , weet dat het beter wordt . Het onbegrip is langzaam plaats aan het maken voor Begrip . En zo komen we verder. Hou vol. 😘

[@trudytru8224]

Best fnd video ive ever seen thankyou so much its great to see some compassion for this disorder

[@carolinerobinson3893]

I'm so glad to see this, my sister has this but in northern Ireland we have no treatment for it, my mum spends 5 to 9 hours just helping my sister get out of bed because all the treamours are extream, she hasn't left the house in over 5 month's as the outside makes everything worse then for days after even a couple of weeks add on 3 hours or more to the getting up time as her fits last hours, I can't even talk to her in my normal tone of voice because it sets her off Into fits she can't watch tv for long without treamours and pain so watches things with subtitles but even the light on the TV will set her off, she can't text without fits she can't do anything for more than 5 mins at most without treamours so she's on all these pain meds for the pain they cause but it's heartbreaking for me to watch as my family is just left on their own to figure all this out, this explains alot, thank you

[@ticksick.s]

I know that their is a specialist that treats this in the UK as the professor I'm now under went to the UK to learn the new treatment I'm about to have

[@FNDHope]

Thank you to all those who have supported this great work. Check out our KZbin channel to learn more about FND from experts like Jon Stone.

[@thejohnsonsnaturalliving1549]

Thank you so much for this video! It’s very helpful!

[@RolftheRed]

I've been an FND victim for possibly a decade. But it was not until I got free of the "normal" medical care that this was discovered by actual doctors who recognized and understood FND that I was treated seriously. It was broken to me in a room of folks after a seizure study. If that event had not happened - well, I have no clue. I was beyond desperate then. Now I just battle with the medical system and the "unenlightened". No, I'm not cured, but I am SO much better. I don't have words to explain how much difference it is to take these (my) people seriously. PLEASE, PLEASE if your a doctor, nurse, or connected with the field PLEASE get up to date with this life-destroying disease. The time is now for you too.

[@Isisbridge]

I'm glad you're getting help, but please don't call it a disease.

[@LorraineIwakashdan]

disease [dɪˈziːz] NOUN a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury. "bacterial meningitis is quite a rare disease" · [More] synonyms: illness · sickness · ill health · infection · ailment · malady · disorder · complaint · affliction · condition · indisposition · upset · problem · [More] a particular quality or disposition regarded as adversely affecting a person or group of people Is a.disease

[@LorraineIwakashdan]

The word 'though ' has no relevance in this sentence. It's clearly a real illness no matter it's cause. Did you not hear what Dr Stone who has studied this for years said?!

[@RolftheRed]

@@Isisbridge it is a disease. Fundamental Neurological Disorder Is a disease.

[@Isisbridge]

@@LorraineIwakashdan Try having MS and then you might understand the difference.

[@jonstone69]

There is more information on FND available at my free information site, www.neurosymptoms.org and via patient led websites (see home and links pages)

[@Hisagixhisagi]

It’s been 3 months and I still can’t walk properly and not on my own even with crutches 3 months ago I was a perfectly normal 30 year old with just your regular human things: stress, anxiety, depression, had been abused by a landlord, had appendix surgery, gallstone pain, ear infections amongst other things. I know that kinda sounds like a lot but I guess everyone has their own problems and some have it much worse than me Still, 3 months ago I was a regular person walking about going to work and living a somewhat normal life Until out of no where my limbs began to be weak and give out, and twitch and spasm uncontrollably I can’t use stairs anymore, I have fallen a lot of times and gotten bruises It’s very stressful Even when I don’t think about it even in bed, my limbs still have a kind of their own and sometimes my hand hits my face or just won’t stop moving like my leg I just wanna be able to walk like I used to 😞

[@dr.mahendrapratap8316]

Very helpful videos Everyone

[@ninareeves4172]

Nearly a year ago 21st June last year. My Journey started with FND.

[@Winstoncb]

I found this video by way of the New York Times Magazine article on the case of the Cuban diplomats, “psychogenic” disorders, and functional disorders: www.nytimes.com/interactive/2019/05/15/magazine/diplomat-disorder.html There are some interesting parallels between functional disorders, as they’re described here, and ME/CFS (chronic fatigue syndrome) both in terms of how they have often been written off as being “in patients’ heads” because their symptoms cannot yet be scientifically explained, and in terms of some of the symptoms themselves - namely pronounced and unexplained muscular weakness (especially in the quadriceps), a persistent sense of unbalance, brain fog. I’ll add that a symptom I do not hear reflected in these descriptions of functional disorders is post-exertional malaise, a hallmark symptom of ME/CFS. How little we seem to know about the nervous system is both disheartening and a source of great hope that scientific breakthroughs in the years ahead will lead to new forms of treatment for us all.

[@lee9655]

Well epileptics used to be thought of as mentally ill before it was found as a neurological disease, MS etc, I think doctors should be more open minded and not be so quick to write it off, I have it too and have been going through the ignorance of some doctors myself.

[@SiothaVest]

Read that article. Many cases have popped up. And now motor and verbal tics are like a yawn... contagious once triggered

[@vanessaharling1957]

Please can somebody help me? How do I try to stop head tremors?

[@SiothaVest]

Help! How do Americans find neuro teams that don't embarras & degrade people when being told it's fnd but zero actual help!

[@jenniferreynolds4233]

My FND is all visual and auditory disturbances (sensory input). Thankfully, it didn't manifest as mobility issues.

[@user-dy5sb3ud8w]

Did it become better ? And how is it know.

[@user-dy5sb3ud8w]

How can i take an appointment with you Doctor?

[@andrewkennan2897]

I was diagnosed with FND just recently but I guess I had this yrs back but wasn’t diagnosed, whether it’s because I’ve suffered from panic/anxiety disorder and Depression for yrs, but as for help with my FND ‘be just been told there is no specialised physiotherapist in my area so obviously I’ve to suffer, not very pleased with NHS Scotland on this, between my panic/anxiety disorder and now this my physical symptoms are chronic, no life at all

[@paulachristiansen7492]

I have a husband that has these, number 1 symptoms, is his speech but won’t go into a facility or even a hospital. He think he will be put into a home. Anyone have suggestions???

[@serenity777mylonas5]

My brother has FND. He’s only 30. Kids and all. It’s heartbreaking to see him struggle not to mention I don’t get to see him often either 😓

[@mummytut8255]

Oh hun 😪 It would be heartbreaking for you & his babies too ☹💜 xxx I'm 38yrs young with 3 young children & I see on their lil faces how much they worry about me so I can only imagine what your brother is going through, how his babies are coping along with how hard it is for you to see him that way 😥 Sending virtual hugs to you & your whole family hun xoxoxo 💜💜💜

[@adrianapop]

I saw different cases but I didn't find anyone with this diagnosis having pain as a main issue. My son has pain since almost 8 years, he's exhausted going from one to another doctor, trying to find a way to relief. I started to agree what he said, life doesnt make sense spending all your energy fighting against pain. He's 29. He's like in a prison. The prison is his own painful body. The most beautiful years of life...

[@TheShinedown09]

Adriana Luminita Pop im really sorry to hear about your son’s struggle. I have found Medical Marijuana has helped my pain but I k ow it’s not easily attainable or recommendable.... also my heat blanket helps pain in my legs hands and abdominal/back pain. I also massage the base of my neck and skull to relieve jaw neck and temple pain, I hope this helps. 💚

[@helenpang329]

I am sorry to hear about your son and hope he finds a resolution. Has he been evaluated for amplified pain syndrome? It is similar in some ways to FND, and the treatment also consists of specialized physical therapy and cognitive behavioral therapy. There was an interesting podcast about it recently: www.npr.org/sections/health-shots/2019/03/09/700823481/invisibilia-for-some-teens-with-debilitating-pain-the-treatment-is-more-pain

[@LorraineIwakashdan]

have you looked into holistic pain management?

[@adrianapop]

@@LorraineIwakashdan Thanks . I thought about this but no, we didn't do. To be honest, first period we trust the doctors, we hoped they will understand what's happening. We lost years... conclusions: no help. We've never met a doctor willing to have an holistic approach. He's condition doesn't allow him to travel somewhere else, now , corona crisis made everything worse and more difficult. The hope is in him self. Observing how his body reacts and trying to find a way to go out of this prison. Didn't help to pushing him to go and try everything I found hoping that someone will help. Giving him the freedom to decide about himself, I discovered he started to find himself stronger. For a sickness without explanation, most people still thinking that's it's only mental problem and this makes everything worse. I hope he will succeed to be strong enough at some moment to go somewhere else. Here, in Netherlands they will not do any other medical investigation. I noticed kind of fair in doctors behavior regarding complicated cases. Most of them want to get rid of these kind of patients. For very well known sickness there are strict procedure and Everything it's going good. Especially if the medical investigation show something. On the opposite is this FND...the last neurologist gave the diagnosis and then ... nobody's interested about the evolution or new symptoms...no other appointments. My husband has Parkinson and the neurologist periodically ask about his condition, if new symptoms appear. For my son...nothing. Only one anesthesiologist kept him as patient to give him the receipt for medicines. I hope this doctor will not send him away like the others who cares only about their careers based on simple cases which can be solved.

[@LorraineIwakashdan]

@@adrianapop I'm sorry you have such a lack of support. I studies two diplomas online which really helped me. You don't need to travel to study more. I did a diploma in neuro-psychological immunology. It is the study of how stress affects the physical body and how we can reverse some responses. I also took some level of holistic pain management. I think you might want to think about alternative treatment. I do not know what you have in Finland. Can you find a Feldenkrais practitioner for example? I was diagnosed with Chronic pain syndrome after a fall which lasted 3 years with severity. Only the Feldenkrais practitioner made any progress. I can not say what will help your son but I do know following your /his gut instinct can help. I do not know how you are for alternative therapists there. Do you have any mind/body therapists there who will do online work maybe? Also, can you avail yourself of more reading materials about pain? For example in chronic pain syndrome the idea is that the brain does not cut off the pain signal once the accident is healed. I found it to rubbish becasue what was actually happening was a nerve had got trapped (probably under the thoratic area) causing deferred pain. The Feldenkrais practitioner helped me see the connection between my collar bone and the pain in my back. I could not connect the two but once I had done I knew I was approaching the pain from the wrong direction by treating the back when it was the collar bone which had the trapped nerve. Can you maybe get a person who works with either pain management or movement or an OT maybe?

[@zoediamanti6285]

I have find I got diagnosed yesterday

[@mummytut8255]

Hi my fellow FND warriors 😘🌹 Couple of questions if anyone has an answer or some insight please xx I was diagnosed about 3yrs ago & my right side has always been the target, how many of you get a stroke like episode? My right side literally looks like I've had a stroke... I stutter during attack, can't comprehend what people are saying, drool, it is literally like a stroke & I for the last year get these attacks 3 times a day at least, my body is so tired.. Also, I'm 38yrs old, with 3 young children & oh I am so afraid my children will get it, anyone know the likelihood of that? Thanking you kindly 🙏 Bless & look after you, you are all you have xoxo

[@Pugsrus]

Unfortunately I’ve had right side stroke attacks for over 30 yrs. it started totally out of the blue. It was devastating everyone thought it was epilepsy I was tested and nothing showed up. I was treated very badly like I was mad or worse making it up. I was told to sit down and calm down. The attack always started the same my face would just drop and followed by my arm the leg . I’d also be unable to speak . I also get a overwhelming sickness . Even hrs later my whole right side is numb and my speech is very slurred. I went everywhere for help and nobody tried to help me. I was even having them while sleeping and would wake up with my side not moving or couldn’t speak. I shut myself away from everyone. Then I had a terrible fall downstairs while having this happen. I broke my ankles and caused injury to my spine. Unfortunately it wasn’t diagnosed. A few months later everything from the hips went numb yet my legs felt on fire. I told everyone my doctors my consultant but I wasn’t taken seriously. A few months later my bladder and bowel stopped working. I was taken into hospital and sadly I’d injured my back very sadly and because of my attacks nobody believed me and I was felt numb from hips down and self catheterisation and manual bowel evacuation. My child was only 6 weeks old. I went through hell and still do. The neurologist who treated me and missed my spinal injury treats FND and is well know yet he treated me awful. When I met him after my back surgery I asked him to apologise for what he’d done. His reply was I could apologise for world war 2 but it’s not my fault . I was devastated with what they’d done to me. Once you get a FND diagnosis it’s very difficult to be treated seriously even when you have all the red flags. Incidentally my neurologist wav German. After that he and the others doctors that treated me started a campaign against me telling every medical person involved in my care that I didn’t have a spinal injury and that I was lying. They even wrote to my neurosurgeon who was shocked and he told me to move doctors straight away. He then showed me he’s reply. That he’d got my MRI scans and more important he’d seen my spinal cord and had his hands in my back and he saw the crushed spinal cord and he tried to repair me but he could tell that my nerves were crushed and had died but he didn’t tell me until six months later when I broke down and asked why I couldn’t feel anything . I missed out on so much with my baby because I was determined to get my legs working and refused to buy walking aids or scooter I did everything on my hands and knee’s . My neurosurgeon didn’t tell me because he was praying that I’d get some recovery and he didn’t want to destroy my hope . But sadly I’ve had a spinal injury over 16 yrs. When you have FND you will be treated if you are lying no matter what it is for. When I split for my husband he even went for custody saying I wasn’t a fit mother because my illness are made up. I had to have psychological testing and also IQ . Lucky for me my testing proved I wasn’t suffering from mental illness I had OCD with cleaning and PTSD because of the way I’d been treated by my doctors and neurologist. I wouldn’t see medical professionals for my myself. My IQ came back at 135 which is high so I’ve been told. Yet even so social services recommended my children go to my abusive ex. All because of myFND . There was no way I was letting my ex raise our children I had no choice but to move back in. Has for you passing it on to your child i honestly don’t think so. FND is somethings happen in your brain when you’ve reacted to something and it maybe traumatic and it’s re wired the way you handle trauma or high stress . That is what they say. But I’ve lived with FND for thirty yrs and it happens in any situation even when happy or a sleep. There is no trigger for me one minute I’m fine the next I look like I’ve had a stroke. Even the ambulance men say there is something organic with me. I totally agree something is wrong. I use to believe their narrative but no longer . They put this diagnose on anything they can’t explain. I can’t see why anyone would choose to live this way . FND covers so many symptoms. They also think that I have a migraine that causes my right side to go numb and speech slurred all I know afterwards I’m sick for days and exhilarated and can have more then seven a day and even the night. I hate been this way. Also it could be a hormone imbalance. So please get checked out before been diagnosed with FND . It’s not right don’t end up like me. Really fight hard to find what’s going on. Forms or epilepsy cause the same symptoms so have a EEG and a ECG for your heart. If you really believe something is wrong push for yourself because your worth it and so are your children. Good luck

[@SatumainenOlento]

@@Pugsrus WOW! There is real reasons to get lawyers after those doctors!!! But I do not recommend to take on a fight which makes it even harder for you to live. But I say it as recognition on that which you have experienced. I am extremely sorry of your life experiences!!! And I am hearing your advice. I am already having problems with being treated like hypochondriac and now I know that i will not bring any of this type of things up with my doctor. I am fair and give it a thought that somatization could be reason for some of my symptoms. I am going to be very careful not to give them that option. Thank you so much for your warning!!! It might have saved me from much suffering. I truly wish that you will have better times ahead. When your children are a little older maybe you can try to leave again your abusive ex again? You are so so strong in doing that. Make a good STRATEGIC plan now. Your children can be having a say then to whom they want to live with and that could make your case much stronger. Also, get a good lawyer ready checked. And be careful of playing only defence game! Collect PROOF and EVIDENCE on your abuse now (and absolutely NEVER ever disclose that to your abuser for your own and children's safety) and save it all for some other house than your own!!! Internet cloud service etc. Be ready to hit him under the belt when he is trying to make himself look like the better person. He needs to be so busy defending himself that he forgets to attack you. Possible he knows the game better than you as he is abuser, but your real aim is to keep the kids. Not get him to jail. Hopefully he is too focused on his defence game of not getting into jail that he forgets that he wants the kids. You are super smart with your high IQ, you can play long game better than any. And write everything down. It becomes evidence when it is written down. You got this! 💪 Life will get better for you!!! I am sending much love and strenght to your way 💕💖💕💖💕💖💕💕

[@DaughterOfZion8888]

Yes, I have more of these episodes than I can count over too many years. I lose all facial muscles worse on the rightside. And those episodes often take months of regaining speech.

[@bxstar5276]

If it’s not real I deserve an Oscar!

[@anitablaska4066]

I feel your frustration!!!! Mine is more tremor related due too the point of not being able to maintain daily life, also an

[@francisjtuk]

My wife's been diagnosed with this - anyone recovered to a decent degree ?

[@JamesSmith-ds2hi]

To cut a long story short,I have been having twitching in Botha calves for the last 7 months. And I have recently been told that I have bfs syndrome by a neurologist, and a doctor has also told me I have functional symptoms. I’ve been told by both that Botox won’t make a difference, and that I need cbt therapy. I’m not arguing this, but surely Botox could help, because it stops nerve endings being stimulated. Anyone got any advise? Thanks

[@SiothaVest]

Where IN AMERICA IS THERE FRIGGEN HELP!

[@krugerfuchs]

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