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. ❤
Thank you so much for this, I love to hear I'm not alone. I had never heard of fnd until I ended up with it. Well currently I'm not diagnosed but that's what every medical professional tells me. It started for me back in November last year when I had a panic attack and my mum noticed my leg twitching. They let me have the day of school the day after and next thing I know I'm in a full blown seizure lasting almost 2 hours. We end up calling the paramedics and after we called up the doctors in my town. Who time and time again told my family, it will go away you don't need to worry even though I was having up to 6 seizures a day lasting about 30 minutes each. We finally went to the hospital, about a 9 hour visit. I had tics for a good 8 hours and my had to have a hand behind my head so it wouldn't hit the wall, people looked at me like I was crazy. But the hospital told me, its a bit of anxiety and stress ill be fine. After a few more doctors visits and being ignored we finally went to another hospital as my family told me I looked like I was presenting stroke symptoms and I'd completely lost my speak for about 24 hours at that point. We found a good doctor who told us he could get us a specialist and he seemed so surprised I hadn't seen anyone earlier. By the end of that day my speak came back through trying for a while to pronounce letters, then words, then sentences. I felt like I was trapped in my body. A few weeks after one of my symptoms completely left my paralysed and the only thing I could slightly move was my face for about an hour or 2 before u regained my feeling and movement again. I still get paralysis for between 10-20 minutes after most of my seizures now and have trouble with my limbs barely being able to help me sit up after I finally feel a little better. I've been put in camhs for this, but they still haven't officially diagnosed me, and it's been almost a year. I've been through countless tests and hospital visits. I had to leave school, lost anyone I had at the time, and now it's just me and my family. Im doing college from home and I feel like it's confined me to my home. Seeing others stories gives me the hope that one day I can regain some people in my life to support me outside my home so I'm not so afraid anymore. ❤
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.
Hi I’ve just been diagnosed with fnd. The videos I’ve seen have been so helpful and I’m grateful for these as now I finally know what I’ve been suffering with for the last 20yrs without realising. It’s been really bad for this last four months. Finding out has lightened me and now I can move on to trying to recover or at least get back to work.
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 can relate to you.. I have fairly prominent small vessel ischaemic changes in both cerebral hemispheres and was told by neurologist that for my age that is a lot, however they don't think that is contributing to my gait, cognitive, speech issues as it is more likely FND and spine degenerative disease. My grandmother had early onset dementia and Alzhimers in mid 50's. This was a second opinion 1st neurologist said FND, Spine degenerative disease and multiple scattered T2 Hyperintensity in both cerebral hemispheres and both FND and vascular changes could be contributing to gait, memory, speech etc issues. Tbh they don't know and everytime you go and see a new neurologist they say something different/contradicting what they say or even their colleagues. Everyone keeps saying don't stress then things will get better. Honestly kinda fed up hearing that. I am in constant pain, tingling in hands n feet, constant pain in calves, can't walk for long, my walking is so difficult and different to how I use to work (and I so miss my walk) no one gets it
@@moebymakeup I hear you.. this is so scarily familiar. I don’t understand how a neurologist can think that telling a person with multiple systemic symptoms to relax is in any way helpful? I mean these people are educated to the max, right? Surely they know that they are seeing electrical signalling issues that aren’t going to magically disapear if we just sing a happy tune and look at the flowers? In the uk there are no imaging facilities that allow the signalling issues in FND to be clearly seen. It’s a ‘nope. No lesions so no problem’ blanket response I seem to see across the board here. Which is v worrying. Esp with history.. I’m v sorry you’re in this too x
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.
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.
Thank you so much for sharing these stories 🫶🙏 stronger together ⭐
😢😢thankyou for sharing. My son was diagnosed yesterday. My heart is broken i hope a cure is found soon ❤
Thank you for all your heartfelt work in producing this. These stories need to be heard-- especially by the medical community.
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. ❤
Thank you for everyone involved for taking the time to create this documentary. I'm going on 14 years living with FND.
Thank you for sharing your experiences and educating others. Mom of a 16 year old FND warrior 💙🧡
I’m also 16 and have FND it’s really hard and it’s such a horrible debilitating condition!💔
These stories need to be told to educate people and some neurologists
Deberían ver estás historias todos los neurólogos del mundo y psiquiatras tambien
Thank you so much for this, I love to hear I'm not alone. I had never heard of fnd until I ended up with it. Well currently I'm not diagnosed but that's what every medical professional tells me. It started for me back in November last year when I had a panic attack and my mum noticed my leg twitching. They let me have the day of school the day after and next thing I know I'm in a full blown seizure lasting almost 2 hours. We end up calling the paramedics and after we called up the doctors in my town. Who time and time again told my family, it will go away you don't need to worry even though I was having up to 6 seizures a day lasting about 30 minutes each. We finally went to the hospital, about a 9 hour visit. I had tics for a good 8 hours and my had to have a hand behind my head so it wouldn't hit the wall, people looked at me like I was crazy. But the hospital told me, its a bit of anxiety and stress ill be fine.
After a few more doctors visits and being ignored we finally went to another hospital as my family told me I looked like I was presenting stroke symptoms and I'd completely lost my speak for about 24 hours at that point. We found a good doctor who told us he could get us a specialist and he seemed so surprised I hadn't seen anyone earlier. By the end of that day my speak came back through trying for a while to pronounce letters, then words, then sentences. I felt like I was trapped in my body.
A few weeks after one of my symptoms completely left my paralysed and the only thing I could slightly move was my face for about an hour or 2 before u regained my feeling and movement again. I still get paralysis for between 10-20 minutes after most of my seizures now and have trouble with my limbs barely being able to help me sit up after I finally feel a little better.
I've been put in camhs for this, but they still haven't officially diagnosed me, and it's been almost a year. I've been through countless tests and hospital visits. I had to leave school, lost anyone I had at the time, and now it's just me and my family. Im doing college from home and I feel like it's confined me to my home. Seeing others stories gives me the hope that one day I can regain some people in my life to support me outside my home so I'm not so afraid anymore. ❤
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.
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
Hi I’ve just been diagnosed with fnd. The videos I’ve seen have been so helpful and I’m grateful for these as now I finally know what I’ve been suffering with for the last 20yrs without realising. It’s been really bad for this last four months. Finding out has lightened me and now I can move on to trying to recover or at least get back to work.
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 can relate to you.. I have fairly prominent small vessel ischaemic changes in both cerebral hemispheres and was told by neurologist that for my age that is a lot, however they don't think that is contributing to my gait, cognitive, speech issues as it is more likely FND and spine degenerative disease. My grandmother had early onset dementia and Alzhimers in mid 50's. This was a second opinion 1st neurologist said FND, Spine degenerative disease and multiple scattered T2 Hyperintensity in both cerebral hemispheres and both FND and vascular changes could be contributing to gait, memory, speech etc issues. Tbh they don't know and everytime you go and see a new neurologist they say something different/contradicting what they say or even their colleagues. Everyone keeps saying don't stress then things will get better. Honestly kinda fed up hearing that. I am in constant pain, tingling in hands n feet, constant pain in calves, can't walk for long, my walking is so difficult and different to how I use to work (and I so miss my walk) no one gets it
@@moebymakeup I hear you.. this is so scarily familiar. I don’t understand how a neurologist can think that telling a person with multiple systemic symptoms to relax is in any way helpful? I mean these people are educated to the max, right? Surely they know that they are seeing electrical signalling issues that aren’t going to magically disapear if we just sing a happy tune and look at the flowers? In the uk there are no imaging facilities that allow the signalling issues in FND to be clearly seen. It’s a ‘nope. No lesions so no problem’ blanket response I seem to see across the board here. Which is v worrying. Esp with history.. I’m v sorry you’re in this too x
Much love
I was just recently diagnosed with FND on May 9th and I would like some more advice on managing pain and random tremors
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.
That is very interesting I'll have to have someone try it for me when I next have a seizure x
My pain is constant, sometimes i vomit from the pain. I need help.
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.
That’s should say psychological - even though colorectal issues are now involved 👍🏻
I'm so sorry you're going through this. ME is awful enough. And yes, the diagnosis is problematic in the US as well.
* 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
Ricardo Ramp
Anyone else have experience in uk?
By experience do you mean have fnd? If so I'm from the UK and undergoing my diagnosis!
Is my son the only one to havr zero balance as his only symptom?
Persistent Postural-Perceptual Dizziness (PPPD) is one manifestation of FND.
So not much hope 😢
It's a THEORY not a definitive thing
A theory that is far less harmful than the "she's faking it for attention" theory has been.
What do you mean by this?