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

Bless you. You've been through a lot. Thank you for your story. I've had symptoms for 10 years, but only received a diagnosis of FND last year. It started in my left hand as dystonia and has gradually moved to all my left side. I now cannot walk far, I mobilise using the wall, furniture or my husband at home, I'm house bound and I'm now going to need a wheelchair. I've been to neurophysio and do my exercises regularly, I practice mindfulness, prayer, positive thinking and gratitude. I'm still affected and my symptoms are not going away. FND affects everyone differently, not everyone will recover regardless of what they do. I'm absolutely fed up with people being judgemental and making insensitive statements like "it's completely cureable" or "you can remap your brain". This is not the case! It's an insult when people say that. I was in my 40s when symptoms began, so now in my 50s with worsening dystonia, mobility and walking. I'm just trying to make the best of my life! As everyone else with it is too.

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 KZbin 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”

DWP need to take condition more serious to who suffer a disability, but not people suffer the same

If you a paper on FND, As I've got FND and do the papers in Brallie. For. A blind person and do it in brallie. Thanks Peter Lovell 17 /B757JZ

I believe that FND is a misdiagnosis!

Diagnosed late September last year, neurologist mentioned speaking to psychologist but then didn't actually refer me to a service your can't self refer to and also told me to "learn to live with my symptoms". The symptoms ended my career and have shrunk my world - would he have been able to just live with it had his career just ended. I waited almost four years to see neurology (pandemic) and walked away almost as clueless as I went in. I am hopeful for better understanding in professionals - I never ever had anxiety about seeing doctors for anything until now.

FND Hope has refused to allow me to join their adult support groups. They are a shameful, base group. I have literally tried to get them to let me join their support groups for FIVE YEARS. And after five years I finally heard back from someone. Guess what he did? Refused to let me join. This group is a sham, a fraud, and they do NOT care. FND HOPELESS

FND Hope has refused to allow me to join their adult support groups. They are a shameful, base group. I have literally tried to get them to let me join their support groups for FIVE YEARS. And after five years I finally heard back from someone. Guess what he did? Refused to let me join. This group is a sham, a fraud, and they do NOT care. FND HOPELESS

FND Hope has refused to allow me to join their adult support groups. They are a shameful, base group. I have literally tried to get them to let me join their support groups for FIVE YEARS. And after five years I finally heard back from someone. Guess what he did? Refused to let me join. This group is a sham, a fraud, and they do NOT care. FND HOPELESS