I’ve had FND for over three years now but was only diagnosed less than a year ago. I have most of the symptoms, you name it I’ve probably had it. Ive been in a wheelchair for about 6 months now learning to walk in the middle and then losing my ability to walk again due to stress I’ve experienced. I’m so happy that FND is starting to get more recognition because it’s straight up ruined my life with bullying, loss of independence and how I’ve had to miss out on so many great opportunities along the way. Good luck to everyone currently dealing with FND and I wish you all the best to recover ❤
Good afternoon all, Our daughter of 15 has FND (N.E.A.D.) and was diagnosed 3yrs ago. She had a double seizure 5 moths ago which the first one took her memory and the second one took her speech and legs in the space of 50 minutes. She has been in her wheel chair since then. She had just made the England U16 Elite squad for field hockey as a keeper and 3 days later lost the lot. We as like you all have been on our own for 3yrs with little help, we are trying to set up ways to raise awareness in the public( novices) so all help would be fantastic. We were sent to St Thomases in London being told this doctor was the only one in the country that could help!!!! We love what you all are saying but WE NEED TO GET OUT THERE MORE... Stay Safe and keep Believing.
I have FND and was in hospital after a severe reaction to morphine. I was laughed at by a nurse whilst there after my speech was poor and my legs shakes so badly I couldn’t move. I already had a severe back issue and this compounded the issues. I’m still in the early stages of treatment and I hope that my speech starts to improve greatly. There has been some amazing help from the Mind team and the mental health teams within the NHS. This video has made me realised how difficult it is to explain to them people about FND and that I’m not alone.
Hello, I was diagnosed with FND December 2018 after a backward fall down my stairs knocked me out. I was home alone and when I came round I could not get up. I was rushed to A&E as I couldn’t move my legs and the paramedics thought I had broken my back. After several days of being prodded and poked, questioned like a criminal and spoken about like I wasn’t there, I was visited by the resident neurologist and psychologist whom explained what they believed was an accurate diagnosis of FND. Like many others I had never heard of FND before and I don’t mind admitting, the thought of it scared me to death. I’m nearly 3 years down the road and still unable to take care of myself as I did, I get through each day and thank the lord for that. I’m also epileptic, of course I have fibromyalgia as many others do, I get unbelievable neuralgia pains down my right side and my memory is fading. My daughter is my rock and I’m ashamed to admit it but if I didn’t have her I would have taken my own life months ago.
The extent of FND treatment in the U.K. is "Lay down until the attack passes". My case involved five misdiagnoses:- TIAs, migraines, panic attacks, epilepsy and psychosomatic issues. It took eighteen years to get a diagnosis because, as so many have said, we are either not believed at all or treated as if we are making it up. I'm now in my twenty third year of the condition and had learned what to do long before my even getting to see a neurologist.
Thank you 🙏🏻 I’m a Jemma (with a J too 😉) it is so difficult...FND is frustrating because the help out there is not really there unless it is specifically for FND and even then it is extremely hard and I always feel dismissed. It is so hard to live with 24/7
Thank you I was diagnosed with FND last year it's been very hard for me with not lot of people knowing much about FND here in Australia . I have noticed in the UK lot more Doctors are wanted to learn more about FND plus you have more people in the UK then Australia TH-cam has helped me a lot to unstand what I'm going through . I wish everybody good luck with their health and thank you for your story's on FND Take care keep safe
My psychologist diagnosed FND. I have brain damage from treatment for another condition. I still think fnd is an umbrella catch term for various brain conditions for which they have no idea of what they are. I base this on researching neurology and various trusted sources and speaking to many people with fnd.
Hi i have FND i was diagnosed at u of m hospital I started a podcast about my story, hoping the US can get the energy the UK has on this disorder soon. ❤️
The UK is useless dealing with FND. Sadly FND is a condition that nobody understands. Been very truthful when i was 18 i had a stroke and since then everyday day i have the same symptoms rightside body weakness and problems with speech. How I've been delt with by doctors, neurological services have been disgusting. For 29 yrs there's been no help. I ended up having a bad fall on my stairs at home and broke my ankles. I knew I'd done more damage because of the pain i was in yet it went undiagnosed. 12 month later the back pain was so severe i could only stand leaning right forward. My legs went numb and my feet including my toes. The only senation was in my big toe. My bladder and bowel stopped working and i was begging for a medical professional to help me. But they all thought it was made up and in my head. I finally give birth and i knew there was something seriously wrong. I never felt my baby been born. I told my midwife and doctors and nobody listened to me. Honestly the pain got so bad. My legs were on fire and if anything touched them the burning was so bad I'd scream out. I tried to get up to see to my newborn and my legs wouldn't move. I had to pull my body along the floor using my elbows and finger tips just to fed my baby. I phoned my doctor and told them if they didn't come out i would be phoning ambulance since I'd phoned them the last week and they'd just told me to get my partner to pick up pain relief. The phone rang it was the doctor telling me he wasn't happy about making a house call. I told him i was phoning ambulance then, he then changed his mind. 10 mins later a doctor turned up. She was practically laughing at me.. I was heart broken. She then pulled out a huge needle and pricked me around my legs toes and between my legs and my butt. She then told me that i needed to go to hospital even though she didn't think anything was wrong. I was put under a neurosurgeon who found out that my spinal cord had been crushed by bone, disc material. My neurosurgeon was so angry how I'd been treated. Even after this happened the doctors and the neurologist still treated me very badly and made out i was lying. I was heartbroken, but my neurosurgeon told them straight i saw with my own two eye's what you did to this lady it was me who put my hands in her back trying to repair the spinal cord. Once you get diagnosed with a illness like FND you are never taken seriously again by doctors. Everything you have is put down to either attention seeking, lying or your mentally ill. Now I'm disabled and numb from the hips down. So please don't think the UK are treating FND any differently to the US. FND is just a new buzz name for it at the moment. They still don't have a clue why this is happening and very little research is been actually done. When i first started with full stroke symptoms nobody had a clue what was happening 3 days later i was still throwing up and couldn't move my right side. After two weeks i started regaining my right side and feeling semi normal again, then it happened again. They told me it was probably the birth control pill that I'd been talking 6 month, so i stopped it, but sadly that didn't stop these stroke like events. Gradually they stopped after about a year. Then i had a accident and was knocked out for a few minutes and within hours i had another. I nearly lost everything because of this my home, my family and my self worth. I trust very few medical professionals now and tend to stay away from hospitals and doctor's now. I hope your health gets better and you find the real reason for why your body is having these symptoms. What i can't understand is if this condition is so well known by the medical professionals why isn't far more research been done and why aren't patients treated with far more respect and car instead they are treated so badly. Like they are faking and are liar's. They've just put a diagnosis on it so you'll feel better. They seriously haven't got a clue.
I have FND and not seen a Dr for years, I’m getting worse but they don’t believe me and say the hospitals are busy with covid, what do I do next. It’s horrid to be left like this
our daughter is 13 years old been in a wheelchair for over a year turning 14 this year and the total lack of understanding and knowledge among the professionals is quite frankly scary, our daughter is a complete warrior but as a parent we are absolutely no further along than when this first happened and continually battling to find someone who can help who truly knows what they are doing. I do thanku for doing this but change is needed, our daughter is missing her childhood due to ignorance and in a lot of cases arrogance and not by patients or carers but by the very people who are supposed to help
Sadly there is no treatment they don't have a clue. The term FND is another buzz word to give patients a diagnosis. Been truthful its not a diagnosis. I started with a stroke like events at just 18. Over 30 years ago. Honestly i don't want to frighten you but my experience with FND is truly frightening. No doctor or medical professional believes a word that is said. Every symptom you have is put down to FND unfortunately missing a whole host of emergency conditions. No matter how much i asked and even begged for help i was left. Finally i did meet a neurosurgeon who really believed me but sadly it was far to late. My spinal cord was so badly crushed and had been left that way years and all the awful burning pain and numbness had been compression of my spinal cord. I'm now numb from hips down and no bowel or bladder control. When you get diagnosed with FND it totally changes your life because doctors stop taking you seriously no matter what your symptoms. Until they give these symptoms a proper diagnosis people with FND will be treated badly. There is a reason why thiscis happening they need to stop with the BS and found out what really going on. I really wish a good recovery for your daughter and know how upset and stressed you must be. Don't stop fighting.. Hopefully one day they'll found out what is happening to FND suffers. Don't stop fighting you'll find someone to help.
I got diagnosed 3 weeks ago with FND, I'm 17. I went 2 years without a diagnosis. I was rowing at the time I went downhill, training every single day, until one day I got off my rower and I couldn't walk. My movement started going further and further downhill. To the point I was twitching all over constantly, I went 3 month straight without stopping. I to eventually went into a wheelchair. The doctors all blamed it on a knee injury, trying to find an answer that wasn't even there. I even had a surgery for that non existent injury. FND is a dead end diagnosis, and your daughter is the most incredible person for dealing with it so young. I know how hard it is to have something taken from you so quickly. And she needs to know she's amazing. I hope she's getting some help now. Stay safe!
I was diagnosed with FND 2 months after 3 years being sended from department to department in UK hospitals after accident I had at work. Its still a nightmare , I suffer for hypermobility in joints from hips and below. I hardly walk. I have huge balance problems and today my physiotherapist told me I may be like this forever because NHS is known for not treating people properly and I havnt recieved any help what so ever.... well just exercises....
It took me 5 years before I have been seen by the right person in NHS. Try to get referral to this hospital in London, anyway that's just my suggestion . National Hospital for Neurology and Neurosurgery, Queen Square, Holborn, London
Hi everyone. My wonderful son who is nearly 27 was diagnosed with FND 6 months ago. I have been reading some of your comments which really worry me about the lack of help available for us. His neurologist consultant told him what type of help he needed but didn't offer a referral to any of the services. Can he refer himself or does he need to go back to the neurologist or GP to be referred? His symptoms are gradually increasing and I am so worried for him that it'll be years before he can get help. I read on the internet that a package of speech, physio and psychotherapy would be needed but no suggestions of where he might get this. Please, where do we start?
How can I get help with my FND please? I was diagnosed over a year ago but was told there is no treatment available and my symptoms are getting worse. I suffered sleep paralysis again with it last night which lasted 20 plus minutes and I fell over in work today. I’ve been aching all over all week and I’m concerned something worse is brewing 😟😔
Yes do contact them. I have been diagnosed with FND after suffering for almost 3 years now. No one in family and friend circle have ever heard of FND and I have many doctor friends but it has been very reassuring speaking to the team in Neurology hospital in London. Best wishes
Yes, st George's hospital in sw London, I was referred there by the neurologist in my local hospital after going through tests to rule out autoimmune diseases after year and half of pushing the GP before being sent pillar to post. GPs didn't have a clue except a locum who thought it was fibromyalgia. But blood tests were negative but last year another rheumatologist confirmed I had FND and Secretary FM.
![กี่หมื่นฟ้า | Your Sky Series EP.1 [2/4]](http://i.ytimg.com/vi/qJbQs_nhjD4/mqdefault.jpg)
I’ve had FND for over three years now but was only diagnosed less than a year ago. I have most of the symptoms, you name it I’ve probably had it. Ive been in a wheelchair for about 6 months now learning to walk in the middle and then losing my ability to walk again due to stress I’ve experienced. I’m so happy that FND is starting to get more recognition because it’s straight up ruined my life with bullying, loss of independence and how I’ve had to miss out on so many great opportunities along the way. Good luck to everyone currently dealing with FND and I wish you all the best to recover ❤
Good afternoon all, Our daughter of 15 has FND (N.E.A.D.) and was diagnosed 3yrs ago. She had a double seizure 5 moths ago which the first one took her memory and the second one took her speech and legs in the space of 50 minutes. She has been in her wheel chair since then. She had just made the England U16 Elite squad for field hockey as a keeper and 3 days later lost the lot. We as like you all have been on our own for 3yrs with little help, we are trying to set up ways to raise awareness in the public( novices) so all help would be fantastic. We were sent to St Thomases in London being told this doctor was the only one in the country that could help!!!! We love what you all are saying but WE NEED TO GET OUT THERE MORE... Stay Safe and keep Believing.
I have FND and was in hospital after a severe reaction to morphine. I was laughed at by a nurse whilst there after my speech was poor and my legs shakes so badly I couldn’t move. I already had a severe back issue and this compounded the issues. I’m still in the early stages of treatment and I hope that my speech starts to improve greatly. There has been some amazing help from the Mind team and the mental health teams within the NHS. This video has made me realised how difficult it is to explain to them people about FND and that I’m not alone.
Thank you for sharing.I have Fmd problem but it is difficult to give awareness for the community .You are lucky.You have campaign .I am from Ethiopia
thankyou you all explained what I live there is little to no support and treatment for brain injury or FND in NZ but there is still hope!!
Hello, I was diagnosed with FND December 2018 after a backward fall down my stairs knocked me out. I was home alone and when I came round I could not get up. I was rushed to A&E as I couldn’t move my legs and the paramedics thought I had broken my back. After several days of being prodded and poked, questioned like a criminal and spoken about like I wasn’t there, I was visited by the resident neurologist and psychologist whom explained what they believed was an accurate diagnosis of FND. Like many others I had never heard of FND before and I don’t mind admitting, the thought of it scared me to death. I’m nearly 3 years down the road and still unable to take care of myself as I did, I get through each day and thank the lord for that. I’m also epileptic, of course I have fibromyalgia as many others do, I get unbelievable neuralgia pains down my right side and my memory is fading.
My daughter is my rock and I’m ashamed to admit it but if I didn’t have her I would have taken my own life months ago.
The extent of FND treatment in the U.K. is "Lay down until the attack passes". My case involved five misdiagnoses:- TIAs, migraines, panic attacks, epilepsy and psychosomatic issues. It took eighteen years to get a diagnosis because, as so many have said, we are either not believed at all or treated as if we are making it up. I'm now in my twenty third year of the condition and had learned what to do long before my even getting to see a neurologist.
Keep Strong amazing lady !! I have this too . It's hard but we are now bringing awareness ❤️
Thank you we need you ❤
Thank you 🙏🏻 I’m a Jemma (with a J too 😉) it is so difficult...FND is frustrating because the help out there is not really there unless it is specifically for FND and even then it is extremely hard and I always feel dismissed. It is so hard to live with 24/7
Thank you
I was diagnosed with FND last year it's been very hard for me with not lot of people knowing much about FND here in Australia .
I have noticed in the UK lot more Doctors are wanted to learn more about FND plus you have more people in the UK then Australia TH-cam has helped me a lot to unstand what I'm going through .
I wish everybody good luck with their health and thank you for your story's on FND
Take care keep safe
I7 september 2020 i got this FND am 39 yrs it's so hard sure
My psychologist diagnosed FND. I have brain damage from treatment for another condition. I still think fnd is an umbrella catch term for various brain conditions for which they have no idea of what they are. I base this on researching neurology and various trusted sources and speaking to many people with fnd.
Hi i have FND i was diagnosed at u of m hospital I started a podcast about my story, hoping the US can get the energy the UK has on this disorder soon. ❤️
The UK is useless dealing with FND. Sadly FND is a condition that nobody understands. Been very truthful when i was 18 i had a stroke and since then everyday day i have the same symptoms rightside body weakness and problems with speech. How I've been delt with by doctors, neurological services have been disgusting. For 29 yrs there's been no help. I ended up having a bad fall on my stairs at home and broke my ankles. I knew I'd done more damage because of the pain i was in yet it went undiagnosed. 12 month later the back pain was so severe i could only stand leaning right forward. My legs went numb and my feet including my toes. The only senation was in my big toe. My bladder and bowel stopped working and i was begging for a medical professional to help me. But they all thought it was made up and in my head. I finally give birth and i knew there was something seriously wrong. I never felt my baby been born. I told my midwife and doctors and nobody listened to me. Honestly the pain got so bad. My legs were on fire and if anything touched them the burning was so bad I'd scream out. I tried to get up to see to my newborn and my legs wouldn't move. I had to pull my body along the floor using my elbows and finger tips just to fed my baby. I phoned my doctor and told them if they didn't come out i would be phoning ambulance since I'd phoned them the last week and they'd just told me to get my partner to pick up pain relief. The phone rang it was the doctor telling me he wasn't happy about making a house call. I told him i was phoning ambulance then, he then changed his mind. 10 mins later a doctor turned up. She was practically laughing at me.. I was heart broken. She then pulled out a huge needle and pricked me around my legs toes and between my legs and my butt. She then told me that i needed to go to hospital even though she didn't think anything was wrong. I was put under a neurosurgeon who found out that my spinal cord had been crushed by bone, disc material. My neurosurgeon was so angry how I'd been treated. Even after this happened the doctors and the neurologist still treated me very badly and made out i was lying. I was heartbroken, but my neurosurgeon told them straight i saw with my own two eye's what you did to this lady it was me who put my hands in her back trying to repair the spinal cord.
Once you get diagnosed with a illness like FND you are never taken seriously again by doctors. Everything you have is put down to either attention seeking, lying or your mentally ill.
Now I'm disabled and numb from the hips down.
So please don't think the UK are treating FND any differently to the US. FND is just a new buzz name for it at the moment. They still don't have a clue why this is happening and very little research is been actually done. When i first started with full stroke symptoms nobody had a clue what was happening 3 days later i was still throwing up and couldn't move my right side. After two weeks i started regaining my right side and feeling semi normal again, then it happened again. They told me it was probably the birth control pill that I'd been talking 6 month, so i stopped it, but sadly that didn't stop these stroke like events. Gradually they stopped after about a year. Then i had a accident and was knocked out for a few minutes and within hours i had another. I nearly lost everything because of this my home, my family and my self worth.
I trust very few medical professionals now and tend to stay away from hospitals and doctor's now.
I hope your health gets better and you find the real reason for why your body is having these symptoms. What i can't understand is if this condition is so well known by the medical professionals why isn't far more research been done and why aren't patients treated with far more respect and car instead they are treated so badly. Like they are faking and are liar's.
They've just put a diagnosis on it so you'll feel better. They seriously haven't got a clue.
Thank you for the video.
We need to speak how food heal this!
Thank you
I was diagnosed with FND four years ago its an ongoing struggle
Thank you💚
I have FND and not seen a Dr for years, I’m getting worse but they don’t believe me and say the hospitals are busy with covid, what do I do next. It’s horrid to be left like this
our daughter is 13 years old been in a wheelchair for over a year turning 14 this year and the total lack of understanding and knowledge among the professionals is quite frankly scary, our daughter is a complete warrior but as a parent we are absolutely no further along than when this first happened and continually battling to find someone who can help who truly knows what they are doing. I do thanku for doing this but change is needed, our daughter is missing her childhood due to ignorance and in a lot of cases arrogance and not by patients or carers but by the very people who are supposed to help
Sadly there is no treatment they don't have a clue. The term FND is another buzz word to give patients a diagnosis. Been truthful its not a diagnosis. I started with a stroke like events at just 18. Over 30 years ago. Honestly i don't want to frighten you but my experience with FND is truly frightening.
No doctor or medical professional believes a word that is said. Every symptom you have is put down to FND unfortunately missing a whole host of emergency conditions. No matter how much i asked and even begged for help i was left. Finally i did meet a neurosurgeon who really believed me but sadly it was far to late. My spinal cord was so badly crushed and had been left that way years and all the awful burning pain and numbness had been compression of my spinal cord. I'm now numb from hips down and no bowel or bladder control. When you get diagnosed with FND it totally changes your life because doctors stop taking you seriously no matter what your symptoms.
Until they give these symptoms a proper diagnosis people with FND will be treated badly. There is a reason why thiscis happening they need to stop with the BS and found out what really going on.
I really wish a good recovery for your daughter and know how upset and stressed you must be. Don't stop fighting.. Hopefully one day they'll found out what is happening to FND suffers.
Don't stop fighting you'll find someone to help.
I got diagnosed 3 weeks ago with FND, I'm 17. I went 2 years without a diagnosis. I was rowing at the time I went downhill, training every single day, until one day I got off my rower and I couldn't walk. My movement started going further and further downhill. To the point I was twitching all over constantly, I went 3 month straight without stopping. I to eventually went into a wheelchair. The doctors all blamed it on a knee injury, trying to find an answer that wasn't even there. I even had a surgery for that non existent injury. FND is a dead end diagnosis, and your daughter is the most incredible person for dealing with it so young. I know how hard it is to have something taken from you so quickly. And she needs to know she's amazing. I hope she's getting some help now. Stay safe!
I was diagnosed with FND 2 months after 3 years being sended from department to department in UK hospitals after accident I had at work. Its still a nightmare , I suffer for hypermobility in joints from hips and below. I hardly walk. I have huge balance problems and today my physiotherapist told me I may be like this forever because NHS is known for not treating people properly and I havnt recieved any help what so ever.... well just exercises....
It took me 5 years before I have been seen by the right person in NHS. Try to get referral to this hospital in London, anyway that's just my suggestion . National Hospital for Neurology and Neurosurgery, Queen Square, Holborn, London
Hi everyone. My wonderful son who is nearly 27 was diagnosed with FND 6 months ago. I have been reading some of your comments which really worry me about the lack of help available for us. His neurologist consultant told him what type of help he needed but didn't offer a referral to any of the services. Can he refer himself or does he need to go back to the neurologist or GP to be referred? His symptoms are gradually increasing and I am so worried for him that it'll be years before he can get help. I read on the internet that a package of speech, physio and psychotherapy would be needed but no suggestions of where he might get this. Please, where do we start?
How can I get help with my FND please? I was diagnosed over a year ago but was told there is no treatment available and my symptoms are getting worse. I suffered sleep paralysis again with it last night which lasted 20 plus minutes and I fell over in work today. I’ve been aching all over all week and I’m concerned something worse is brewing 😟😔
Are there any FND specialists in London?
It might be National Hospital for Neurology and Neurosurgery, Queen Square, Holborn, London you need to check it yourself.
Yes do contact them. I have been diagnosed with FND after suffering for almost 3 years now. No one in family and friend circle have ever heard of FND and I have many doctor friends but it has been very reassuring speaking to the team in Neurology hospital in London. Best wishes
Yes, st George's hospital in sw London, I was referred there by the neurologist in my local hospital after going through tests to rule out autoimmune diseases after year and half of pushing the GP before being sent pillar to post. GPs didn't have a clue except a locum who thought it was fibromyalgia. But blood tests were negative but last year another rheumatologist confirmed I had FND and Secretary FM.
Secondary fibromyalgia
@@parmjittumber8916 okay - thank you