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FND Action is a registered charity supporting people diagnosed with Functional Neurological Disorder (FND) across the UK, and advocating for the cause.
For further information please visit: www.fndaction.org.uk
#action4FND #Voices4FND
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Thank you! I'm in the US. When I was in Jr. High, I started having horrific headaches. EEG showed nothing and they said I was rebounding on Excedrin Aspirin. I went on to have severe panic disorder, then diagnosed with Fibromyalgia, or hundreds of negative blood tests "it's all in your head"! Then in 2017 I had a MRI looking for MS, the result of gait issues, seizures etc. The MRI was to no avail, so they decided to diagnose me with PTSD and kick me out the door. In 2021 I was MRI on my brain again, still nothing. My seizures were worse, and my gait issues were becoming problematic. The neuro doc classified me again, PTSD. Finally in 2022 I had such severe seizures, that they rushed me to the hospital thinking I was having a stroke. THEN............a doctor from Main, I think it was, came in and talked to me. He spent 1.45 hours giving me tests, and listening to me. The symptoms in me affect the right side especially. Speech issues, I'm looking at you, I know exactly where I am, my mouth., just won't speak. He said I believe you have what's called Functional Neurological Disorder, FND for short. I was sent for an EEG to make sure there wasn't anything else. So, after 43ish years of being gaslit, told it was in my head, etc., I finally have an answer. It's not well known here in the states, in fact, I hurt my leg 6 weeks ago, as soon as we arrived at the ER, I had a bad seizure, they insisted I fell and hit my head. I had to explain I had FND, threw severe shuddering, and they had never heard of it. I'm now 58 years old and am trying to find out everything about it. I have so many more things but won't list them all here. Thank you to the UK, for driving hard at trying to spread awareness, and all the publishing. I pray the US will follow. I'm not crazy after all!
The more people learn about this rare Neurological disorder as it is called on tv the more people seem to be suffering from it. FND is something one can fully recover from when it is described as a Conversion Disorder and treated by those who understand it to come from the mind's making.
I was officially diagnosed in 2022 with FND. There is no treatment centre of any kind for it here in South Africa. No specialised dr's no nothing.
Unfortunately for me here in South Africa there is virtually no treatment available. I've only got a clinical psychologist and a normal psychiatrist who tells me FND is curable. My neurologist diagnosed me in 2022 after I had stroke like symptoms and was hospitalised. I had to use KZread to relearn how to walk properly. Did my own exercises to strengthen my left leg, arm and hand. I still have problems with them. Being discriminated at work is also making symptoms worse and it's extremely distressing.
I’m so sorry this has happened to this lady - anyone… they get called ‘malingerers’ Even people waiting to be waiting to be diagnosed with Epilepsy or Lyme Disease, etc… get called ‘malingerers’ until fully diagnosed…
I have FND. I take propranolol for tremors
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
Thank you for speaking & so glad you got your voice back, do i have a way to speak to you because i understand your anonymous…….
Fnd is an inflammation in the brain. Scientists need to do their job and find a real treatment
Hey everyone. First thank you for this post. I am so sorry for you Leanne. Please do not give up! There are a few things you can try, even without treatment. They are safe and easy to try. I hope it will help you or the other readers here. I had the first symptomes when I was 10. All of a sudden I could not walk and there was a weird weakness in my legs. After 2 months everything was fine and I could walk again. Now it is back and it did bring some friends like tremors, worse eye sight etc. I do not think it will go away, even after the expertise treatment I had in the Netherlands. But I did learn a few tricks to make life better. What helps me when I have tremors is teasing my brains. I use a massagegun but you can use anything realy. As soon as your brain change focus, the tremors will calm down. Without that massagegun you could try spelling words backwards or counting from 100 to 1 with laps of 7 (so 100 - 93 etc.) There are also a few easy tricks to calm the nerve system fast. They are all over youtube. Oh and dont forget, you will have good and bad days. Everyone has them, even the healthiest people. Be kind to yourself when it is one of those days. Big hugs, good luck and take care. I hope you all feel at least a lot better soon.
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.
Do antipsychotics work for fnd?
I feel like FND is a diagnosis that neurology comes to when they can’t find anything else and they send us away to look at websites and wait years for any treatment or support at all. I know that FND has a diagnostic check list that neurologists should use to positively recognise sysmproms and diagnosis is then made after other things are also ruled out, but in my experience it’s been a case of ‘og you have trauma in your history and a lot of stress, it’s FND’. Rather than ‘let’s do the right tests for other neuro conditions presenting this way to make sure before we go with FND’ and it’s left me scared and wondering if they’ve got it right for me?
Sorry for spellings thumbs shaking on phone keypad 👍🏻
3 yrs of fnd with no treatment I recovered some but alot I still can't do
I'm trying to come to terms with the lack of support given since I was diagnosed and my doctors are not very helpful, so I would like to thank you for sharing this video.
Diagnosed 2023 FND & lost my voice can't words ,speech therapy & last week told her im getting worse ? 😢
what is the treatment?
What Carolyn said. thank you but I want links to the research so I can give it to my doctor. I live in the US.
This does not explain what causes the sudden onset .. why do the signals suddenly get mixed up . There must be a common cause
Thank you from someone who has this! Hoping for more awareness!
Just diagnosed with fnd after 18 years. I dont hqve seizures but i do have paralysis and migraines and chronic pain and memory loss and things like no spatial awaremess
Brilliant talk by FND Portal. Thank you!!!!
Excellent talk!!!!! Thank you for making this recording available for all.
Thank you for highlighting. Recently diagnosed after being ambulanced to hospital with suspected stroke. Spent 15 days being thoroughly checked out and daily physio. Unfortunately since being discharged home 15 days ago to community support I have received no help at all. Unable to work or drive and just getting round on crutches downstairs. Thank good ness for great friends and neighbours looking out for me, looking after my pony and my dog trainer who is caring for my dog.
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/
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, was an amazing day, your work you do is amazing.
Thank you so much for this simple, factual and well communicated video. I am so sick of FND ‘explanations’ that insist all FND is hidden trauma, which it is not. Or videos that use old descriptive statements, and overtly make the point “it’s not organic” as if that explains what it IS. What patients want is actual scientific data, cutting edge research and honest discussion, that includes the admission their is still much to be discovered about FND. It seems to be a diagnosis everyone wants to make excuses for or brush under the carpet. This video actually looks head on about what is going on in the brain….thank you!
I was just diagnosed. I was wondering if FND is hereditary
Thank you so very much for sharing your story, I am in my early 50’s and was finally diagnosed with FND 2 years after a few years of many doctors, specialists etc not knowing what was wrong with me. After 2 strokes and still not getting better I found a wonderful new GP and she believed there was something neurological that was affecting me and not just the strokes, she referred me to just an amazing neurologist and she listened to me, watched my walk and speech, tremors, a few tests later to rule out somethings and she diagnosed me with FND, which I had never heard of. After years of doctor’s reports, specialists, occupational therapist I am now on the NDIS government program (in Australia 🇦🇺). The sad thing is every time I need help with therapies , treatments etc, even though I am approved and my condition is listed on my file, it is a battle to still get any help. That’s why stories/ TV reports, spreading information and knowledge about FND is so important. Sending love, prayers and strength to you 🙏🏻🫶🏻🙏🏻🫶🏻
Bless you so much - so much medical gaslighting going on
My wife was diagnosed with FND it’s so bad when she has seizures and she can’t walk for long it’s soul destroying seeing her like this but just like you she won’t give up and we hope that the medical professionals will get too know this disability because not many do
I've had it since 2017. You get very little help. I have speech problems, seizures plus various other problems related to it.
Thank you for your sharing, hang in there there is hope, I am in my 70 , I t is a pity you are so young , you will get better with youth on your side
My 9 year old daughter has it and so hard to find professionals that will help.
Listen to ruqya
She is so incredibly brave ❤
Thank for sharing your experience. I have FND over two years. I have problem in medical environment to understand me. Some medical workers think that I can stop this by proper breathing and imagination of correct motion. I have very often dissociation which is the most uncomfortable condition.
Thank you for sharing your story. I have had FND since 2017 ❤
My partner has been diagnosed with FND I’m astounded at the sheer ignorance of some medical professionals It certainly does not fill you full of confidence.We live in the East Anglia area ,and my partner has had spinal surgery fusion on c3 c4 and c5 ,we had to see a spinal consultant again after another MRI showed further bone spurs had grown and were causing problems ,we sat in front of this chap we had never met him previously I told him that my partner was diagnosed with FND and he enquired what was that ,I duly explained and he said well I’m not a neurologist I’m a surgeon ,I very nearly battered him total arrogant Ar*h#£e .Our own GP thinks it’s funny after we went to him as my partner was in a lot of pain and he just smiled and said well there’s not much I can do We do not know much about FND ,we have watched prof John Stone and countless KZread videos from a plethora of people suffering with it, Im thinking of setting up a clinic private of course I know more than most of these drug pusher doctors
Thank you god amen Jesus Christ almity ❤❤❤
I was diagnosed with functional neurological disorder on June 2 2023 andi think more doctors need to know about this research hopefully one day it will lead to a CURE
What you said makes sense,when I was diagnosed in2010 I was told to look it up on the internet.i have serious fnd and still had no help.thankyou for the video.
If you are in the United States the department of neurology at the University of Pittsburgh Medical Center has specialists and have done wonders for my family member
This is an excellent campaign...A big thank you to Tom Plender and FND Action from the FND community in Canada. Your information sheet is a valuable tool for patients when interacting with clinicians who are not FND aware. Very grateful for your work, it continues to benefit FND patients far beyond your boarders.
Thank you Tom. Always looking for way's to live with this disorder.
I have F.N.D.i have been told there's nothing thay can do just live with it I feel as though thay don't believe me
I really wish this would spread to the United States
I agree i have FND too
I am learning how to take back control which is very good, thanks for the info
Thanks for sharing this important information, Tom. I appreciate it. I plan on sharing with my therapist so we can understand the “brainwork” together! So helpful!!
ever consider that it can be an effect of stroke that differ from the usual paralissed arm ,elocution issues and gait? after terror attack i became overwelmed by sensory input by light :sun and uv from neon light. diagnosed fnd it took me a long time to figure out how to deal with it. that trauma base of fnd didnt make any sense to me and i turned down any psy therapy.
Thank you for sharing this! You are so brave to do that video with all that difficulty you have in your speech. I do have conversion disorder And my symptoms very close to you but you talk better than me! You said you sleep a lot that is okay don’t feel bad about it your body is tired you need to rest. But please don’t sleep a lot just to run away from what you are facing. It is hard and I know that but you are strong actually you are stronger than me and you made this video. You also said you feel lonely that is also normal but never give up to loneliness. For me the Bible was my good friend through it I made friendship with the Lord Jesus and I never felt alone anymore for I feel him with me day after day. Never lose your hope in the bad days you face always think of the good days and on the good day just enjoy every moment in them. Just try your best to learn how to manage your symptoms. Don’t think too much about what you are doing at the moment try to distract yourself then you will succeed. I don’t succeed all the time but 2 times out of ten make me feel happy. You will be in my prayers and you will over come your sickness just never lose your will best wishes!
Thank you so much for publishing this. I would appreciate references to the original research.
Here is the FND Action medical info sheet, it has citations to many key research papers - www.fndaction.org.uk/wp-content/uploads/2023/08/26.08.2023-Information-guideance-sheet-for-medical-professionals.pdf
Same 😄