Just diagnosed FND last week after 2 and 1/2 years of other doctors giving me MRIs and telling me nothing is wrong and then discharging me after debilitating episodes causing total paralysis. The Mayo Clinic diagnosed me thanks in part to your work. I am now on a path towards hope and healing. Thank you 🙏
Thank you Professor Jon Stone, for your dedication towards us that suffer from FND. You have validated me in many ways. My FND started in, 2018 and I have been labeled with so many insulting words. That I started to question my own sanity. I am from the, United States and it took two years to get diagnosed. I was given the Hooves Test and handed your website. She also said to me, “oh by the way, there is no cure for you and or medications”! I was sent home with a diagnosis that I have never heard of. I have never felt more alone and yet again to be abandoned by, the medical community. The silver lining is that I found a wonderful support group. We learn so much from each other to be as helpful as we can. 💙🧡 Thank you again for bringing awareness to one of the misunderstood and debilitating disorder.
Thank-you Dr. Jon Stone. In the world of FND is a massive advancement to receive a reliable diagnosis and to have compassionate care within our medical communities. Your work has helped to make that possible
I wanted to mention something so important to how much medical trauma that I have now. Because of not only by the way I was treated and dismissed. In 2019, I was locked up in a psychiatric ward with so many symptoms of FND. I kept crying and trying to tell them that there is nothing wrong with me mentally. There is something wrong with me physically. They couldn’t care less about me, other than to give me so much psychiatric medication’s. Now, I refuse to go to the ER when I know it’s FND related. Sending healing ❤️🩹 hugs to my fellow FND warriors.
That’s so upsetting - so sorry!! I don’t trust the medical system either. My GP missed an actual complete ovemp absent result on a balance test I did and said it all came back normal - so it’s all in my head? And I got the paperwork myself and IIIIII managed to see what they wrote meant there’s something wrong - a confirmed peripheral vestibular disorder, hhh!! I have autism and so I have a mix of autistic neuro issues and FND. I can’t imagine what you just have gone though, that’s traumatising in itself literally making things worse surely. So sorry ❤️🩹
It is all right these so called people doing talks on FND maybe they should train these neurologists and doctors first ? Once you get labelled with FND your life ends because no one is interested your family and friends walk away because they read these people say it is all in your head, I refuse to go to the doctors or hospital anymore because they see the word FND and send you home I have given up past caring now I am 64 and the consultant turned round and said it is down to a unhappy childhood I was livid I said I haven’t been poorly been so lucky but after my Covid jabs my life has fell apart and he blames my childhood I have reported him
Prof Stone please come and teach the Australian doctors. They are 20 years behind. The Queensland PA Hospital Neurologist said you have FND, gave me the FND Hope website and Prof Stone's Neurosymptoms phone app and discharged me. It's still the dark ages Down Under. The app has helped me comprehend this crazy illness and there is some info that helps. I'm using the techniques suggested. My heart goes out to those in the past with this awful disorder. I can't imagine what they went through. 😢💔 Grateful for groups like this! 💖
@@tranquilvortex in the past patients with Conversion disorder may well have been treated in a psychiatric hospital with a good outcome. I feel more sorry for the patients of today who might miss out on care even when asking for what should be considered appropriate for the patient's needs. Times do not always change for the better. Good luck if you are ill.
@@lindasmith8771 my thanks. Yes, I'm in hospital today and have had 4 seizures. The Doctors here at this hospital know my history. It is a challenge to recover from even a bit. I believe it was also called shell shock and hysteria.
Thank you so much for this informative presentation. The work that everyone is doing in bringing FND out of the "Hysteria" dark ages mindset into a clinical diagnosis is muchly appreciated. Having FND for most of my life receiving the attitude that was prevalent in the 90s and now having a daughter who also has been diagnosed. I am hoping with yours and everyone else's work in the FND community will help to increase factual knowledge and awareness so that my daughter and everyone else's child does not receive a similar treatment. Thank you FND Action for organising this and for Prof Jon to present.
For me it was a huge relief to get a diagnosis of FND; but unfortunately the only ‘treatment plan’ was to read the website! Which isn’t much of a treatment plan. Information was nether the less helpful because for much of my life I was told I was either making it up or was malingering. It’s such a pity that my NHS (England) GP wasn’t trained in it.
This is really annoying- I am also definitely autistic. So I also have actual neurological problems. Maybe the burnout (which the psych mentioned) caused the FND part. So, I’ve got double whammy?? It’s absolutely terrible what I’m going through 😢 I’m so dang sick of being sick! I was just an Asperger’s version of autism, I’ve passed on autism, I got parents with autistic like symptoms and my mum is dx ADHD - but probably was an aspie too. Yes I also had childhood abandonment- up into my adulthood; my mum just being there physically but not there for me personally, nurturing etc. but then my mum had/has a narcissistic mother, picked on her like she picked on me. Sent her away to live with a family member because the older brother was too physical with her and it was dangerous and instead of him being taken out, she was sent away for “her protection”, so I had a very absent mother with her own issues and a very busy business man for a father who, finally as an adult had a great relationship with me before losing him to Cancer but he was 79! I literally thought I had MMS because it felt as debilitating and so many similar symptoms- I was like almost sure I had that but avoided testing for it as I didn’t want to have that. But how can you help someone with actual autism with actual neurological disorders and FND. I showed signs of autism as a baby and toddler so I gave autism not trauma and I won’t have anyone tell me differently- I am so freaking autistic- I just don’t have a language learning disability so, I can write well, as you can see. Tiered not enough for the autistic community who also have FND probably caused by autism overload been you have the type of autism that people say things like - on but you’re high functioning right? (NOOO u don’t live in my body omg) or oh, but you don’t look autistic (yea that’s cos I’m masking to make YOU feel comfortable and so YOU won’t mock me).
I have been told I have a functional gait disorder due to a sensory processing disorder that I always had. It makes it hard to walk in busy, visually stimulating environments. Also my gait sometimes improves in a manic/hypomaniac bipolar mood. Any explanation for this? I know sensory processing disorders are common in bipolar and schizophrenia.
I developed FND after a reinfection with covid. I know others that have too - do you think an increase in FND due to post viral complications will speed up research in the area?
If fnd replaces the name of the psychiatric/psychological illness Conversion Disorder why does Dr Stone consider his migraine a Conversion disorder/ fnd? Does Dr Stone believe that no patient has a conflict converting into physical symptoms? How can the medical profession best help those without psychological problems and with if they use the label fnd for all? Tests all normal can sometimes reassure and allows the mind to settle a little which can cause symptoms to ease.
Just diagnosed FND last week after 2 and 1/2 years of other doctors giving me MRIs and telling me nothing is wrong and then discharging me after debilitating episodes causing total paralysis. The Mayo Clinic diagnosed me thanks in part to your work. I am now on a path towards hope and healing. Thank you 🙏
Thank you Professor Jon Stone, for your dedication towards us that suffer from FND. You have validated me in many ways. My FND started in, 2018 and I have been labeled with so many insulting words. That I started to question my own sanity. I am from the, United States and it took two years to get diagnosed. I was given the Hooves Test and handed your website. She also said to me, “oh by the way, there is no cure for you and or medications”! I was sent home with a diagnosis that I have never heard of. I have never felt more alone and yet again to be abandoned by, the medical community. The silver lining is that I found a wonderful support group. We learn so much from each other to be as helpful as we can. 💙🧡 Thank you again for bringing awareness to one of the misunderstood and debilitating disorder.
Thank-you Dr. Jon Stone. In the world of FND is a massive advancement to receive a reliable diagnosis and to have compassionate care within our medical communities. Your work has helped to make that possible
I wanted to mention something so important to how much medical trauma that I have now. Because of not only by the way I was treated and dismissed. In 2019, I was locked up in a psychiatric ward with so many symptoms of FND. I kept crying and trying to tell them that there is nothing wrong with me mentally. There is something wrong with me physically. They couldn’t care less about me, other than to give me so much psychiatric medication’s. Now, I refuse to go to the ER when I know it’s FND related. Sending healing ❤️🩹 hugs to my fellow FND warriors.
We can still share your story 💜 www.fndaction.org.uk/our-stories/
That’s so upsetting - so sorry!! I don’t trust the medical system either. My GP missed an actual complete ovemp absent result on a balance test I did and said it all came back normal - so it’s all in my head? And I got the paperwork myself and IIIIII managed to see what they wrote meant there’s something wrong - a confirmed peripheral vestibular disorder, hhh!! I have autism and so I have a mix of autistic neuro issues and FND. I can’t imagine what you just have gone though, that’s traumatising in itself literally making things worse surely. So sorry ❤️🩹
It is all right these so called people doing talks on FND maybe they should train these neurologists and doctors first ?
Once you get labelled with FND your life ends because no one is interested your family and friends walk away because they read these people say it is all in your head,
I refuse to go to the doctors or hospital anymore because they see the word FND and send you home
I have given up past caring now
I am 64 and the consultant turned round and said it is down to a unhappy childhood I was livid I said I haven’t been poorly been so lucky but after my Covid jabs my life has fell apart and he blames my childhood I have reported him
Prof Stone please come and teach the Australian doctors. They are 20 years behind. The Queensland PA Hospital Neurologist said you have FND, gave me the FND Hope website and Prof Stone's Neurosymptoms phone app and discharged me. It's still the dark ages Down Under. The app has helped me comprehend this crazy illness and there is some info that helps. I'm using the techniques suggested.
My heart goes out to those in the past with this awful disorder. I can't imagine what they went through. 😢💔
Grateful for groups like this! 💖
@@tranquilvortex in the past patients with Conversion disorder may well have been treated in a psychiatric hospital with a good outcome. I feel more sorry for the patients of today who might miss out on care even when asking for what should be considered appropriate for the patient's needs. Times do not always change for the better. Good luck if you are ill.
@@lindasmith8771 my thanks.
Yes, I'm in hospital today and have had 4 seizures.
The Doctors here at this hospital know my history.
It is a challenge to recover from even a bit.
I believe it was also called shell shock and hysteria.
I have both FND & hEDS with chronic pain (& Autism). Anti inflammatory can be helpful for the chronic pain if it is from hEDS.
Thank you so much for this informative presentation. The work that everyone is doing in bringing FND out of the "Hysteria" dark ages mindset into a clinical diagnosis is muchly appreciated. Having FND for most of my life receiving the attitude that was prevalent in the 90s and now having a daughter who also has been diagnosed. I am hoping with yours and everyone else's work in the FND community will help to increase factual knowledge and awareness so that my daughter and everyone else's child does not receive a similar treatment. Thank you FND Action for organising this and for Prof Jon to present.
For me it was a huge relief to get a diagnosis of FND; but unfortunately the only ‘treatment plan’ was to read the website! Which isn’t much of a treatment plan. Information was nether the less helpful because for much of my life I was told I was either making it up or was malingering. It’s such a pity that my NHS (England) GP wasn’t trained in it.
Excellent talk!!!!! Thank you for making this recording available for all.
This is really annoying- I am also definitely autistic. So I also have actual neurological problems. Maybe the burnout (which the psych mentioned) caused the FND part. So, I’ve got double whammy?? It’s absolutely terrible what I’m going through 😢 I’m so dang sick of being sick! I was just an Asperger’s version of autism, I’ve passed on autism, I got parents with autistic like symptoms and my mum is dx ADHD - but probably was an aspie too. Yes I also had childhood abandonment- up into my adulthood; my mum just being there physically but not there for me personally, nurturing etc. but then my mum had/has a narcissistic mother, picked on her like she picked on me. Sent her away to live with a family member because the older brother was too physical with her and it was dangerous and instead of him being taken out, she was sent away for “her protection”, so I had a very absent mother with her own issues and a very busy business man for a father who, finally as an adult had a great relationship with me before losing him to Cancer but he was 79!
I literally thought I had MMS because it felt as debilitating and so many similar symptoms- I was like almost sure I had that but avoided testing for it as I didn’t want to have that. But how can you help someone with actual autism with actual neurological disorders and FND.
I showed signs of autism as a baby and toddler so I gave autism not trauma and I won’t have anyone tell me differently- I am so freaking autistic- I just don’t have a language learning disability so, I can write well, as you can see. Tiered not enough for the autistic community who also have FND probably caused by autism overload been you have the type of autism that people say things like - on but you’re high functioning right? (NOOO u don’t live in my body omg) or oh, but you don’t look autistic (yea that’s cos I’m masking to make YOU feel comfortable and so YOU won’t mock me).
I have been told I have a functional gait disorder due to a sensory processing disorder that I always had. It makes it hard to walk in busy, visually stimulating environments. Also my gait sometimes improves in a manic/hypomaniac bipolar mood. Any explanation for this? I know sensory processing disorders are common in bipolar and schizophrenia.
I developed FND after a reinfection with covid. I know others that have too - do you think an increase in FND due to post viral complications will speed up research in the area?
If fnd replaces the name of the psychiatric/psychological illness Conversion Disorder why does Dr Stone consider his migraine a Conversion disorder/ fnd?
Does Dr Stone believe that no patient has a conflict converting into physical symptoms?
How can the medical profession best help those without psychological problems and with if they use the label fnd for all?
Tests all normal can sometimes reassure and allows the mind to settle a little which can cause symptoms to ease.
Do antipsychotics work for fnd?