Any one else have symptoms that your body thinks it's having a work out? I just had lower leg jirking and felt exhausted and sweating but I wasn't doing anything. My fit bit even recored it as a work out because my heart rate spiked for 20 mins I couldn't get it down. Horrible feeling.

have just been diagnosed with fnd and they are not sure on ms yet, I'm lied on the hospital bed writing this and I'm holding in the tears, my legs go numb and tingling, blurred vision, tired and the worst Is the blocked head feeling and the tremors/jolting.. I would really like to talk to others who have this as I'm scared right now, it's getting hard to walk and my life has suddenly changed, they say stress makes it worse but how can I not be stressed and upset

I wonder how many people world wide been diagnosed with FND during Covid 19 and the increase could be due to the Covid Boosters. My Wife was diagnosed with FND with in 12 hours after taking the Pfizer Booster in Feb 2022. Now 2 years later been in and out of hospitals can not walk forward, only way to get around in the house or outside in public is in a Wheelchair. My wife now back in Hospital with a tube down her nose a new FND symptom is highly sensitive at the back of the tongue which no longer can eat normal foods unable to take her meds with out the tube with yogurt. Except the Doctors and Neurologist wont acknowledge or even investigate why my wife has this new FND Symptom on top of the other several symptoms like unable to open 3 fingers on one hand and 2 on the other and seizures..

* sorry I lost track- said that chasing a diagnosis at private consultations wasn’t the right way and to look up cbt and mental health support

Just out of a private consultation with a neurologist in Sheffield thornberry hospital. Was told that I need to think myself better or I will Stop myself healing from FND. Advised to follow up neuropsychology even though I explained I am on a wait list via nhs neurology and it stands at 2 years at the mo! He told me to lie and not tell the mental health team I should contact that I am on that wait list. He told me that chasing a diagnosis at private consultations - I have ME and FND diagnosed but I have white matter in my brain scans and my dad dies of Lewy bodies dementia at 67.. so I chased up some advice rather that waiting - I saved for months to be told I need to think myself better by a professor in neurology. This is why we need better representation and so much more research into this disorder. The people at the top still think we can think ourselves better . I feel sick to my stomach at the thought to of what is to come. They used to tell people with MS that they were malingering. Same with aids patients. I wonder what the future brings for FND patients worldwide. Sending love to all of us diagnosed with this x

I was just recently diagnosed with FND on May 9th and I would like some more advice on managing pain and random tremors

My son he was diagnostic with this last week and i dont know how to help him he is 13year old he doesn't know this is happening to him how can i help the doctor dont give me much information they only said this is something the psicology has to evaluate

Hi my name is Andrew and I have had FND for 3 years and I have had over 4000 Seizures from the 26/7/2021 and my seizures can go for one and a half hours and there is bad very bad and very serious and lots of things set me off about 50 triggers and I would love ❤️ some help NDIS will not help me out with anything please 🙏

Is my son the only one to havr zero balance as his only symptom?

So if this a malfunction of the brain, what is it caused by. Could it be a constant pressure from cortisol being released causing a corrosion of the brain.

Thank you for everyone involved for taking the time to create this documentary. I'm going on 14 years living with FND.

It's a THEORY not a definitive thing

Anyone else have experience in uk?

I had an FND diagnosis last May after 6 years of ME diagnosis and a round of tests for MS. The neurologists knew I had a lot of trauma in my past and stress in my present and rather than test me for other things they went straight for the FND diagnosis. I have light spots on my brain and issues with the docs on my spine, movement and speech and cognition and balder bowel sensory and sensations etc. They refuse to acknowledge the physiological changes in my body and I am awaiting neuro psychotherapy and FND physio awaiting. Currently the wait lists are two years min. Mean time I have to sit with the FND diagnosis which is a shock enough as it is, let alone watching my symptoms being passed off as ps colorectal by nhs Sheffield hospital neurologists. In the uk FND is v much still a v misunderstood diagnosis that in my experience is actually dangerous to have on medical notes when it comes to accessing treatment and support.

We found that by pushing on the base of my head (neck)where the parasympathetic nerve runs the seizure stops. Unfortunately if the seizure isn’t “finished” when the pressure is released the seizure continues. Maybe someone reading this will find this helpful.

As a fellow FND sufferer I would like to thank you for sharing this video and hope everyone who shared their story are OK xxx

Deberían ver estás historias todos los neurólogos del mundo y psiquiatras tambien

This is very informative for those who aren't familiar yet, still very heartfelt. Having FND I can very much relate and am emotional. Sharing to all in my circle.

These stories need to be told to educate people and some neurologists

Thank you for all your heartfelt work in producing this. These stories need to be heard-- especially by the medical community.

I have FND i live in Australia & i had never heard of it until i was told i have it . Everyone who has it will tell you that they would never wish it on anyone els it wouldn’t matter how much you hated them . That’s just how cruel it is to those who have it . i see many FND sights & organisations on the internet but i never see the one thing that all of us who have it need the most a number to call or a button to push to say i have FND & i need help or just someone to talk to about it ….

Much love

Thank you for sharing your stories. I have FND to and I can first hand understand everything each person said. It feels good to know I’m not alone. Your right FND is hard everyday. I will continue to share my story to anyone who will listen with hope to educate more people and medical providers. ❤

Lusten to ruqya itll help

Hoping they highlight someone who developed FND after COVID or Epstein-Barr, like me!

I'm at the end of my rope right now with my own 😢😢😢I understand so much. There has to be Hope somehow. I'm so tired of having seizures. So tired of no quality of life. 😢😢😢

Most common condition but no treatment, no cure! Weird!

What did you do to treat it?

Well done ladies, I’ve only just found this video. Singing is so good for you. 🙏🏻 for better days ahead for you all ✨

How does KZfaq combine with Zoom to participate in the release event? Do I choose one or the other(?) Thanks!

Thank you for sharing this 🙂 I have MS and have been told I have Functional Overlay too - I guess that’s the same as FND, is it? On the subject of Neuroplasticity, I have read Norman Doidge’s book. He talks about Brain Mapping Therapy: is that something you employ, or would it be relevant?

I can't thank you enough Professor Edwards for doing this Interview 🤗 I have Fam ET but started to have most of Parkinson's symptoms. After being told I did have Parkinsonism for 4 months during which time I researched, subbed to Support Groups & told my Family. Now I have to adjust to a different diag for which my Drs think of as malingering and I don't want to tell my Family, but they will be glad to hear for my sake and theirs that so far it's not. If it wasn't for Videos like this I don't know how I'd cope😢 BUT as I've come to understand it I've noticed I'm walking better & my Tremors have less decreased!! Thank you so so much for hosting this FND hope, I'll be Following for more❤

Yes autism with heds albeit diagnosed 43 causation

❤

My daughter is turning 15 and she has FND. She was diagnosed at Boston Childrens as well!

Me encanta ver estás historias, yo también tengo FND, y las historias me hacen sentir menos sola en mi lucha con esta enfermedad.

Exactly the same age as my Daughter in the UK who developed FND. Best of luck with your recovery 🙏👍

Keep on sharing please

Hello, I'm your new subscriber from Mombasa Kenya please support me

Are there any links to Lyme disease and FND?

After a car accident where I fell asleep at the wheel due to burn out (pushing myself to the limit everyday for 10+ years), I was diagnosed with post concussion syndrome, then PTSD and finally FND. My symptoms are mostly speech, fatigue, cognitive and memory processing which I self managed for 3 years. Recently, after a very stressful workplace incident, I have had a complete relapse and now I can't work, at least for now until my symptoms resolve. I already was seeing a neurologist for chronic migraine prior to the accident and as they are unable to treat me for FND, have directed me to FND websites. Eventually, I have found this video and it has answered so many questions my neurologist did not have time to answer (not their fault, just how the system works). I have received very mixed signals around exercising with fatigue and put on a bit of weight not knowing if I should be pushing myself to exercise or not. As a solo parent and a PhD candidate, a big thing for me is to stop doing everything and feeling guilty when my body is telling me to slow down. This Q and A is very helpful. Thank you!

I wish you can stop the music intros or breaking up parts of video with music. It literally nearly gives me a seizure. I find it so jarring on a sensory level. I really want to watch and listen but sadly cant because of this.

This is great the music breaking it all up is very jarring for me.

I start to have FND when I was like 13-14 years, I get my diagnostic at 33 years. Its funny you call your fnd problem bob, I call my trembling hand Thing like Addams Family xD

There is no point as there is no help with NHS regarding this, reading up on a website gives u info but it does not help

I just was diagnosed with FND in August 2023.

The symptoms i have mimics so many diseases ,its just crazy. Im hoping something happens soon .My movements are getting worse ,cant control it ,.i guess never could its just getting worse .im hoping there is some kind of medication to at least control my involuntary movements .Its embarrassing ,its very tiresome ,muscles get weak quick ,fatigue ,sometimes its overwhelming and have to sleep , no choice .Have not been diagnosed ,see the neurologist again soon .I guess the old wait and see game .Looking back over the last 5 years or longer i can see symptoms that i missed ,actually i told the drs but one ear out the other .I hope everybody gets some kind of relief ,my heart gos out to all .❤

Re your comments on seeing a neurologist and someone like yourself. That would work if both parties understand FMD properly. Which the majority don't. I suggest that you look into the work of Professor Tisch at St Vincent's. He's a neuro specialising in movement disorders. I honestly, with all due respect, don't believe you have the correct understanding of this condition.

With love and support we can all help each other as people living with fnd. Much love to you honey for pushing yourself! 🤟🏻🖤💜🖤

You guys are misleading poor, helpless patients with FND…please skip the PT and and specialized therapy only…patients desperately need TMS and you guys are not talking about this enough…it’s all about money and business for you guys…it’s a shame, I’m so sorry for all of you suffering in America’s helpless FND “healthcare”