I was diagnosed 4 years ago. Discovered stress is a major trigger. I moved away from the city to a quiet country town and remote for callcentre, but last week, after a year and a half I had a severe attack with epileptic fits and weakness on the right side this time which is normally on the left. I have to hand my notice in as I have had many days off, multiple episodes of brain fog and speech silence, or short fuse due to frustration at no fault of the customer. Fatigue, heavy weighted head, my brain ignores my foot, causing me to fall 🤭 and well, the list is long but talking to others about it helps immensely. Thank you ❤🙏🎉
Finally! Finally! I found what is wrong with me. I have Complex PTSD and disassociative identity disorder. I also have severe childhood amnesia. But memories of abuse began to return after a nervous breakdown at work when I was in my late 40s. I have a psychiatrist and I'm in therapy. I also take sertraline. I diagnosed myself with FND (convergence disorder) when I related to my therapist about an episode of hysterical blindness that happened when I was 14. I also "disappear" with missing time, but my most troubling symptom of FND is visual disturbances that range from blurry vision, derealization, to tunnel vision and finally blackout. I've had one situation where I couldn't understand what was being said to me. My vision can fade out like a dimmer switch or I can completely disappear in an instant like a light switch. I can also be talking and fade out consciously while I continue to talk nonstop. This can happen for an hour before I slowing return to consciousness to a much disconcerted person who gave up trying to interject long ago. Stress can trigger this, but like he said, sometimes it just happens with no trigger. They say this isn't brain damage, but for me, it is brain damage. Imagine rewiring your car and saying there's no problem with the car. My problems stem from childhood trauma that was ongoing and severe. I hope my sharing of symptoms will help others. From what I understand, new to this, the limbic system that reglations emotions becomes overloaded and turns off the frontal cortex that converts sensory input, therefor sensory input is not being processed. I described to my therapist like having only about 20 percent of sensory perception making thru. I hope to join a trial study and have functional MRI. But, wouldn't you know it, my psychiatrist just retired and they haven't replaced him. Good luck to those with FND.
I was diagnosed with FND 2 days ago after 6 days in hospital with a suspected mini stroke. Thank you for your video on this disorder, I had not heard of this before my hospital admission. I wish you and all FND sufferers the very best of luck and I will be sharing your video on my Facebook page so family and friends can understand this more.
@@SteveJones313 Hi, my FND is still with me but my symptoms have eased a bit. I'm not having as many seizures and my walking has improved but I still get fatigued when I walk with either my walking stick or my 4 wheel frame. I have a mobility scooter for distances. My memory is hit and miss, I still have ticks and spasms but I'm now use to it all so it's now just normal life for me. Thanks so much for asking, take care
I’ve been experiencing this since I was 8. I turned 32 last year and have only just been diagnosed, following a late Autism diagnosis. For the first time in my entire life I’ve just watched a video that explains me. This is a really good video explaining it ☺️
Thank you so much for making this video! I had a diagnosis yesterday after almost 2 years of varying symptoms causing me such anxiety, frustration & hopelessness! I can now show this video to loved ones to enable them to understand this condition more. I hope you are doing well. Thank you again.
Thank you for sharing. My daughter was diagnosed with FND with Seizures and attacks 2 years ago. Been to psychiatrist and neurologist and on and on. One time has had 60 seizures in a 45 day period. Completely exhausting. It’s nice to know we’re not alone. Thank you for sharing your story.🙏
I have FND l was treated for Parkinson’s but then told l had FND it started after a car accident l not depressed and have a good life. I was in hospital for week but it didn’t help me. Most doctors have never heard of it and think its made up. Its very hard but l am blessed with a wonderful family.
Great job walking people thru FND so clearly. If only everyone in my world would watch videos like yours...... I wouldn't feel so misunderstood. Now, how to get the US State and Federal government agencies to add FND to their list of disability qualifiers. After 5 years of fighting I continue to be told I am completely capable of working full time in my previous capacity as a business owner.
Hey, thank you so much for you comment. It's people like yourself that gave me the drive to make this video. Can I ask, are you intouch with any support groups? If not, I'd recommend FND Hope. I don't have any position with them, but they've been super helpful to me.
Apply for SSDI and you will be turned down. Then appeal and you will be turned doe again (everyone does). Then get a social security attorney They will take some of the final money but it's worth it.'You will go through a county judge and you will get it.
I was just Diagnosed with FND a few days ago. I am struggling with believing the diagnosis. My symptoms seem different . I do not have triggers. This is all day every day in front of people or alone. I have severe Myoclonic jerks, Tics, my arms flail or my legs kick up when I am walking , recently my tics have turned vocal meaning i now yell and my arms flail. My gait is severely compromised .especially when I just get up I struggle to put one foot in front of the other. sometimes i take one step forward only too take another backwards . Once I warm up I can walk and get around but i cant take 10 rhythmic steps in a row without this happening. I am a former cancer patient and my kidney was removed in 2017 . My old neurologist 1st diagnosed me with Paraneoplastic disorder caused from a hidden tumor . They tried to locate this hidden tumor and never found anything . I was then sent to see a neuro oncologist and after he reviewed all of my scans , blood work, and history and a 1 hour office visit he diagnosed with FND. I do have memory issues and often I feel like my head is in the clouds, I am not as witty as I once was. I have never been a depressed person until I got this movement disorder in 2019. Since this has happened I have become depressed but I was not before . I call it situational depression. I also am so much more emotional than I ever was before. Anyone story similar? sometimes I feel like FND is like the fibromyalgia diagnosis yes that was what i was diagnosed with in the past when I complained about the pain in my bones. I feel like if i accept this they will never find what i really have . I have been treated with IV IG for like 8 months it worked at first but after 4 months it felt like a placebo. I already have these tics every 10 seconds even while i sleep . I already cant walk straight, now i have verbal loud tics to go with my movements I worry how bad this will get. I am not on disability has anyone with FND gotten disability and how awful was the process? I still work at home remote for a real estate company I have had this job for 5 years now and I am scared because my performance is not what it used to be and I am un hirable if I ever lose my job anyone can relate ?
Sorry to read this John. I have similar symptoms. Not able to be physical when I have been my whole life, nor hold conversations as I have loud verbal ticks and talk slowly. I have been initially diagnosed today. You beat cancer. I think you can beat this.
It's so hard, I'm 9 months in and often housebound, its do rough, have you considered metal toxicity or viral/bacterial issues being a cause? I think I'm gonna try a functional doctor next, big pharma ones no help
I have just been diagnosed with FND I am wheelchair bound and have a number of other symptoms that you spoke about thank you for the video it was very informative .
Hi. I'm writing on my mum's phone. I was diagnosed with FND in 2019 and today in 2020 I still struggle to accept FND... Thanks for helping to reassure me that it is real. Although I'm still struggling with it :(
Thank you for your explanation and struggle I have been in Queen Sq neurological and neurosurgery hospital after being thought to have a stroke after Ct and MRI a wonderful dr spoke to me for 40 minutes explaining FND and it answers so many of my questions over the last 3-5 months 20:48
U have a great voice. I have been diagnosed last september. Feel very helpless at times. I have to fight for my rights at work to get a proper chair. Cost me more energy and stress than it should. And i have a very complex issue. My list of diagnoses is sooo sooo long that they just dont know what to do properly. And my symptoms change alot... alot!
With understanding of the illness it is very possible for the patient to recover from the symptoms of illness although some patients will not believe this is so.
Hi Steve, I'm Andrena or Andi. I was diagnosed with FND several years (7) and I am finding great difficulty in accepting this disorder. This did help me in realising the diagnosis does match up with many of the symptoms I suffer from. I was a nurse and lost my whole career because of this, I understand the diagnosis matches with my issues but just cannot connect it with me. Thank you so much for your great insight and information. Take care
I’ve been newly diagnosed and it’s been 6 months with the symptoms and it’s very difficult to live with. I used to be very active 3-4 days in the gym, running 10k quite easily now I can barely walk 15 minutes. I do the best I can but the symptoms are quite severe, chronic headaches on my right side, eye twitching, balance issues, leg weakness, severe back pain. The list goes on. I’m at a point where I don’t know what to do. I really want some quality of life but it’s so hard.
Just diagnosed this week by the neurologist following an accident last september at work, banged my head and spine so some spinal issues as well atm which they are dealing with. I can relate to pretty much everything you said. Thankyou
Thank you for sharing. I have epilepsy and will be having surgery to *hopefully* end that in two weeks. I can't wait to see if these non-epileptic seizures that Ive been diagnosed with end with it as well.
Last week neurologist diagnose me FND and a couple others. After the 2 years of 16 different antidepressants, PTS meds none that worked. Seen a crappy shrink who missed the diagnosis by long shot....so now here I am & I'm just able to start to put my toe in the water on actually learning and the accepting stage/pissed off then crybaby lol. . and try to hear or read or listen to some of these ..its overwhelming I have to take it in small pieces then pause. Confused so new to me . Painful to hear everyones description of their journey. And how hard it will be to break out of any of it, even if just enough to feel some control back. Seems like you would have to be a real rebel bad ass to get some little bitty wins... But a win is a win! I sigh , and rapid heartbeat for everyone ..PROUD OF FND REBELS ...Im feeling like a wimp in comparisons. Don't know if i have enough fight left in me.
I was diagnosed with FND a month ago. It is very scary condition because even when you get better, you don't know when it gets worse again.. I wish there was a medication that would help to avoid the worse so we had at least something that would help us to leave a normal life. I'm trying to stay optimistic and positive but it is difficult sometimes. I have 2 small children and for them I have to keep on fighting...God bless all with this condition, you're not alone.
It started with me when my mother got cancer. I developed anxiety and depression. The doctors put me on tranquilizers and antidepressants. Ended up in and out of the mental hospital. Eventually had ECT. I have had multiple spinal and thoracic surgeries and have all kinds of plates screws, to cut a long story short. Wires etc. Even had my scapula fixed to my ribs. Ended up hooked onoxycont[in, Because of the dystonia, I have had many botox injections while I was put on methadone and clonazepam in the USA. This worked great for many years until the pandemic. Now I am worse than ever. The GP took me off methadone ( because the surgery was uncomfortable prescribing it. They even reduced the clonazepam. Now the stress is unbearable. I wake up in a panic with my heart racing every morning (the famous oxy horrors). Constant pulsative tinnitus in my muscles and head. This is no life.
My brother shared this video with me and scrolling through the comments, I found you post. I'm very sorry you are going through all this. It looks like 5 months have gone by and you haven't even received a comment. I know there's nothing I can offer or anything I can say to ease your pains however I'm simply a strager encouraging you to keep fighting. I will offer up prayers to the one true God for you. If you aren't already, I encourage you to seek him yourself too. God bless you. Proverbs 3:5-6 Proverbs 17:17
I was diagnosed last week with FND when I went to a movement disorder specialist for evaluation for a possible Deep Brain Stimulation procedure. After 2 hours of evaluation, he told me that I had FND and DBS at this time wouldn't be of value to me. He made several referrals including a couple of web sites. I have been researching this issue extensively. Thank you for your documentation it is very well presented and understood. I certainly hope things get better with you and others with FND. I feel very fortunate that I was lucky enough to have had a neurologist who recognized my issues and sent to others who also support the disorder. Be well my friend.
Thank you for this really useful video I am really grateful to you. I was diagnosed in Aug 2022 with FND after trying to get a correct diagnosis for six years. As a sporty active person it has been hard losing use of my legs and general function. I have refused all medications and therapies as I don't feel well enough to go through with trials and experiments. Instead I attend my old karate class and do a fraction of what I can manage in terms of self physio. I also find the samaritans an amazing support weekly to call instead of a prearranged set times of psychotherapy. This is much less invasive and gentle and supportive at times I really the emotional support to help me process events I find upsetting or challenging like adapting to being disabled after being able bodied all my life. I'll be fifty soon. getting the diagnosis has helped me understand what I am going through and adjust my life to be kinder to self and have more confidence to say no to people. God bless you and I wish you the best in being the strong lovely person you are.
I have been told that I have fnd and can't get my head around it sometimes I feel that it is not me but someone who has it but not me because it is just one thing after another it gets me so down and can not do anything about it and it takes everything from me and a whole lot more and people do not understand what is going on I feel helpless at times I wish I had never had this sometime I get so sad and I depressed and my mental illness stuffers like. bad things seize and a mini stoke no feeling down one side and stick hitting my head all the time.
This is the best video I’ve ever seen about FND….even better than ones put out by professionals. I don’t think people can ever understand unless they live with it which is why I feel this video is awesome since unfortunately you suffer as well. I’ve had basically ever system of my body affected except seizures. I’ve passed out though. It’s so humiliating when you are standing there filling out papers and the person is staring at you because you don’t know what the year is. Or worse … not even recognizing people. I have huge movement issues … very weak, legs just give out, tremors, jerking….. I fail neurological tests such as walking one foot in front Of another. I could go on and on because it has taken 17 years for me to get a diagnosis. I can’t work, have zero support… it’s just my daughter and I. It’s extremely isolating which people think…., just go out of the house. First …I feel like I’ve ran 1000 miles the second I get out of bed. Simple things such as a shower wear me out. I get what I call flareups where problems are even worse. I have no friends and live in an isolated area to begin with. I had to go almost 4 hours away to a movement clinic which I had never heard of. It’s part of a teaching hospital. I highly doubt anyone had even heard the word FND here.
I think I have FND, I'm not diagnosed but I've been getting what I call Psychological paralysis in response to strong negative emotions for as long as I can remember. I googled psychological paralysis and FND was the first result. I'm at peace with getting it because, well why shouldn't I be? It only gets in the way of overall functioning in life when it's happening a lot due to some other mental issues I'm having, and It's been happening forever, so I'm kind of used to it. The attacks are horrible, especially when you are out in public. I feel really awkward and embarrassed when I'm having them, so if you think you feel awkward and helpless when trying to intervene, I feel even more awkward and helpless. I don't think a diagnosis would help me directly, but it would help those around me to understand that these symptoms are real, not put on and give them a condition they can learn about and understand. I don't want treatment for my condition because I feel I can manage well enough as it is when my mental health problems are in check. It is only an issue when they are not.
Thank you for explaining this in a way I can completely understand. It's been very frustrating not getting a very clear idea from my doctors. I have so many of the symptoms you've stated and was starting to make myself believe they're in my head. I even started to find time missing as if I wasn't there but haven't moved. Like a blackout but only for 5-10 minutes at a time. Also I'm am constantly switching from insomnia to being so tired I can't stay awake. But again, thank you, I truly appreciate it.
I was diagnosed with FND in early 2021. Soon after, I increased the antidepressant Pristiq to 100 mg from 50 mg. My tics increased in both frequency and intensity. They became quite violent. More scarily I started losing consciousness whenever I urinated. It only lasted a second or two, but was very scary. My GP weaned me off Pristiq and I began taking 50mg sertraline. My tics are must gentler and less frequent and I no longer lose consciousness. Thank you for this clearly articulated, factual and straight forward video.
Its so frustrating trying to explain to people that it has nothing to do with my emotions. Like I’ll be on the toilet and itll happen or sleeping or showering or walking and itll happen.
Absolutely brilliant. Well done. I've had to cope with FND for over 20 years now, with very little support and I have found that it is only in the last few years that it's openly recognised. Your steady pace through much of what FND is about is just right and wonderfuly clear. Best wishes.
Thank you for sharing I have had so many of the symptoms you have and have been diagnosed a few weeks ago. I feel like a hypochondriac and now worry, when do I go to the doctor for pain or problems, I feel stigmatised in a way. I recently stopped sertraline because it made me feel drunk also. I find amytriptaline food to help me Sleep and take the edge off my anxiety.
Hi Steve my name is Isabella I’m 11 and I have fnd one day I couldn’t move both of my legs we called the doctor they said go to the er I had a lumbar puncture and stayed in the hospital 🏥 for 2 weeks and 1 week in a rehab hospital so I get your pain 😀🙂🙃
At your age, I would have been an absolute mess. You seem to have a good attitude, which will help you as you get older. You've got this - never give up.
What is your status now? I have had US neuro now say after 2 abnormal muscle biopsies, tons of labs and abnormal emgs, fall with fracture, difficulty breathing and way worse in sleep that it must be FND. The fact that over 11 mos on Mestinon have regained a good amount of ability with determined walking help from dog, vision is no longer blurred with eye jitter and documented changes in sleep is immaterial. Clearly I dispute this. I do know that strong emotions make me so weak is hard to get out of chair and face feels heavy but that gets better with a small dose of Mestinon in 30 min.
Interesting question. Would be fascinating to see whether the statistics support your intuition; the healthcare system is much more centralised here in the UK so it is possible that the high disease burden of FND is more visible. One positive sign is that specialist FND clinics staffed with healthcare teams dedicated to FND diagnosis and treatment are becoming more established in the UK. My partner is a neuro physio and throughout her 30-year career she has observed very high proportions of FND sufferers in general neuro clinics. Several of her close colleagues have recently moved over to work full-time in specialist FND centres.
Go to Facebook and there are a few groups for FND. One is FND Hope US & Canada. People post about all kinds of problems. There are just more researchers in the UK I think.
I appreciate that. One thing to bear in mind is that it's been a while since I first uploaded this video and knowledge of FND is moving surprisingly fast compared to what was being said at the time. We have TREATMENTS, but they're not cures. Basically, as the FND community explains, FND is something we learn to live with, rather than cure. That's not to say it will NEVER be cured, but certainly no cure exists at this time, but yes it can be treated. It's an important distinction.
😂🤭pause video."just in their head?"☝️✍️write this down.sometimes it actually is.& physically.😉However! For all the education& brains?of medical professionals?They can't or couldn't?😉say ? (Sorry.We don't know.We're just practicing medicine.😉) 😎continue video.
🤔🤔no.keep on pause.& I will continue cause I wasn't done speaking yet.😉👍😎🤔I was told accidentally by a nurse."oh!that's right.you're the one who had TBI?"🤨🤔☝️what's TBI?=no response.😳 "oh nevermind."& yes.She'd find out if something could be done to help the explosions going off in my painriddled brain& body.😉
I was diagnosed 4 years ago. Discovered stress is a major trigger. I moved away from the city to a quiet country town and remote for callcentre, but last week, after a year and a half I had a severe attack with epileptic fits and weakness on the right side this time which is normally on the left. I have to hand my notice in as I have had many days off, multiple episodes of brain fog and speech silence, or short fuse due to frustration at no fault of the customer. Fatigue, heavy weighted head, my brain ignores my foot, causing me to fall 🤭 and well, the list is long but talking to others about it helps immensely. Thank you ❤🙏🎉
Finally! Finally! I found what is wrong with me. I have Complex PTSD and disassociative identity disorder. I also have severe childhood amnesia. But memories of abuse began to return after a nervous breakdown at work when I was in my late 40s. I have a psychiatrist and I'm in therapy. I also take sertraline. I diagnosed myself with FND (convergence disorder) when I related to my therapist about an episode of hysterical blindness that happened when I was 14. I also "disappear" with missing time, but my most troubling symptom of FND is visual disturbances that range from blurry vision, derealization, to tunnel vision and finally blackout. I've had one situation where I couldn't understand what was being said to me. My vision can fade out like a dimmer switch or I can completely disappear in an instant like a light switch. I can also be talking and fade out consciously while I continue to talk nonstop. This can happen for an hour before I slowing return to consciousness to a much disconcerted person who gave up trying to interject long ago. Stress can trigger this, but like he said, sometimes it just happens with no trigger. They say this isn't brain damage, but for me, it is brain damage. Imagine rewiring your car and saying there's no problem with the car. My problems stem from childhood trauma that was ongoing and severe. I hope my sharing of symptoms will help others. From what I understand, new to this, the limbic system that reglations emotions becomes overloaded and turns off the frontal cortex that converts sensory input, therefor sensory input is not being processed. I described to my therapist like having only about 20 percent of sensory perception making thru. I hope to join a trial study and have functional MRI. But, wouldn't you know it, my psychiatrist just retired and they haven't replaced him. Good luck to those with FND.
I was diagnosed with FND 2 days ago after 6 days in hospital with a suspected mini stroke. Thank you for your video on this disorder, I had not heard of this before my hospital admission. I wish you and all FND sufferers the very best of luck and I will be sharing your video on my Facebook page so family and friends can understand this more.
I'm glad this video helped. Since it's been 2 years since, how has your health progressed?
@@SteveJones313 Hi, my FND is still with me but my symptoms have eased a bit. I'm not having as many seizures and my walking has improved but I still get fatigued when I walk with either my walking stick or my 4 wheel frame. I have a mobility scooter for distances. My memory is hit and miss, I still have ticks and spasms but I'm now use to it all so it's now just normal life for me. Thanks so much for asking, take care
I’ve been experiencing this since I was 8. I turned 32 last year and have only just been diagnosed, following a late Autism diagnosis.
For the first time in my entire life I’ve just watched a video that explains me.
This is a really good video explaining it ☺️
I'm glad this video could help. How are things going now?
Thank you so much for making this video! I had a diagnosis yesterday after almost 2 years of varying symptoms causing me such anxiety, frustration & hopelessness! I can now show this video to loved ones to enable them to understand this condition more. I hope you are doing well. Thank you again.
I'm so glad this helped you. How are you doing these days?
Thank you for sharing. My daughter was diagnosed with FND with Seizures and attacks 2 years ago. Been to psychiatrist and neurologist and on and on. One time has had 60 seizures in a 45 day period. Completely exhausting. It’s nice to know we’re not alone. Thank you for sharing your story.🙏
I'm glad this video could be of help to you. How is your daughter doing now?
I have FND l was treated for Parkinson’s but then told l had FND it started after a car accident l not depressed and have a good life. I was in hospital for week but it didn’t help me. Most doctors have never heard of it and think its made up. Its very hard but l am blessed with a wonderful family.
Great job walking people thru FND so clearly. If only everyone in my world would watch videos like yours...... I wouldn't feel so misunderstood. Now, how to get the US State and Federal government agencies to add FND to their list of disability qualifiers. After 5 years of fighting I continue to be told I am completely capable of working full time in my previous capacity as a business owner.
Hey, thank you so much for you comment. It's people like yourself that gave me the drive to make this video. Can I ask, are you intouch with any support groups? If not, I'd recommend FND Hope. I don't have any position with them, but they've been super helpful to me.
Apply for SSDI and you will be turned down. Then appeal and you will be turned doe again (everyone does).
Then get a social security attorney They will take some of the final money but it's worth it.'You will go through a county judge and you will get it.
I was just Diagnosed with FND a few days ago. I am struggling with believing the diagnosis. My symptoms seem different . I do not have triggers. This is all day every day in front of people or alone. I have severe Myoclonic jerks, Tics, my arms flail or my legs kick up when I am walking , recently my tics have turned vocal meaning i now yell and my arms flail. My gait is severely compromised .especially when I just get up I struggle to put one foot in front of the other. sometimes i take one step forward only too take another backwards . Once I warm up I can walk and get around but i cant take 10 rhythmic steps in a row without this happening. I am a former cancer patient and my kidney was removed in 2017 . My old neurologist 1st diagnosed me with Paraneoplastic disorder caused from a hidden tumor . They tried to locate this hidden tumor and never found anything . I was then sent to see a neuro oncologist and after he reviewed all of my scans , blood work, and history and a 1 hour office visit he diagnosed with FND. I do have memory issues and often I feel like my head is in the clouds, I am not as witty as I once was. I have never been a depressed person until I got this movement disorder in 2019. Since this has happened I have become depressed but I was not before . I call it situational depression. I also am so much more emotional than I ever was before. Anyone story similar? sometimes I feel like FND is like the fibromyalgia diagnosis yes that was what i was diagnosed with in the past when I complained about the pain in my bones. I feel like if i accept this they will never find what i really have . I have been treated with IV IG for like 8 months it worked at first but after 4 months it felt like a placebo. I already have these tics every 10 seconds even while i sleep . I already cant walk straight, now i have verbal loud tics to go with my movements I worry how bad this will get. I am not on disability has anyone with FND gotten disability and how awful was the process? I still work at home remote for a real estate company I have had this job for 5 years now and I am scared because my performance is not what it used to be and I am un hirable if I ever lose my job anyone can relate ?
Sorry to read this John. I have similar symptoms. Not able to be physical when I have been my whole life, nor hold conversations as I have loud verbal ticks and talk slowly. I have been initially diagnosed today. You beat cancer. I think you can beat this.
I’m also worried about losing my independence and livelihood
It's so hard, I'm 9 months in and often housebound, its do rough, have you considered metal toxicity or viral/bacterial issues being a cause? I think I'm gonna try a functional doctor next, big pharma ones no help
I am in the process of being seen for FND. My movement disorder neurologist referred me to a FND specialist. Thanks for the video.
I have just been diagnosed with FND I am wheelchair bound and have a number of other symptoms that you spoke about thank you for the video it was very informative .
Hi. I'm writing on my mum's phone.
I was diagnosed with FND in 2019 and today in 2020 I still struggle to accept FND...
Thanks for helping to reassure me that it is real. Although I'm still struggling with it :(
My heart goes out to you. Ive had it 5 yrs and it really takes it toll on you both physically and mentally
Thank you for your explanation and struggle I have been in Queen Sq neurological and neurosurgery hospital after being thought to have a stroke after Ct and MRI a wonderful dr spoke to me for 40 minutes explaining FND and it answers so many of my questions over the last 3-5 months 20:48
U have a great voice. I have been diagnosed last september. Feel very helpless at times. I have to fight for my rights at work to get a proper chair. Cost me more energy and stress than it should. And i have a very complex issue. My list of diagnoses is sooo sooo long that they just dont know what to do properly. And my symptoms change alot... alot!
You should apply fo r PIP. You are entitled to it and NEED to have money to live.
Same here. It seems every month i get a new symptom its awful
Thanks for sharing Steve, my daughter was diagnosed a couple of years ago. Your explanation is fantastic and wish you all the best.👍👍 TrickyTrev 🇦🇺
I'm glad this video could help. Hopefully your daughter is doing well.
@SteveJones313 yes she's doing well and learnt it's apart of her. Life goes on and we deal with it day to day. Thanks again TrickyTrev 🇦🇺
With understanding of the illness it is very possible for the patient to recover from the symptoms of illness although some patients will not believe this is so.
Hi Steve, I'm Andrena or Andi. I was diagnosed with FND several years (7) and I am finding great difficulty in accepting this disorder. This did help me in realising the diagnosis does match up with many of the symptoms I suffer from. I was a nurse and lost my whole career because of this, I understand the diagnosis matches with my issues but just cannot connect it with me. Thank you so much for your great insight and information. Take care
How are you now?
I’ve been newly diagnosed and it’s been 6 months with the symptoms and it’s very difficult to live with. I used to be very active 3-4 days in the gym, running 10k quite easily now I can barely walk 15 minutes. I do the best I can but the symptoms are quite severe, chronic headaches on my right side, eye twitching, balance issues, leg weakness, severe back pain. The list goes on. I’m at a point where I don’t know what to do. I really want some quality of life but it’s so hard.
Just diagnosed this week by the neurologist following an accident last september at work, banged my head and spine so some spinal issues as well atm which they are dealing with. I can relate to pretty much everything you said. Thankyou
Thank you for sharing. I have epilepsy and will be having surgery to *hopefully* end that in two weeks. I can't wait to see if these non-epileptic seizures that Ive been diagnosed with end with it as well.
Wishing you all the best with your surgery!
Last week neurologist diagnose me FND and a couple others. After the 2 years of 16 different antidepressants, PTS meds none that worked. Seen a crappy shrink who missed the diagnosis by long shot....so now here I am & I'm just able to start to put my toe in the water on actually learning and the accepting stage/pissed off then crybaby lol. . and try to hear or read or listen to some of these ..its overwhelming I have to take it in small pieces then pause. Confused so new to me . Painful to hear everyones description of their journey. And how hard it will be to break out of any of it, even if just enough to feel some control back. Seems like you would have to be a real rebel bad ass to get some little bitty wins... But a win is a win! I sigh , and rapid heartbeat for everyone ..PROUD OF FND REBELS ...Im feeling like a wimp in comparisons. Don't know if i have enough fight left in me.
I was diagnosed with FND a month ago. It is very scary condition because even when you get better, you don't know when it gets worse again.. I wish there was a medication that would help to avoid the worse so we had at least something that would help us to leave a normal life. I'm trying to stay optimistic and positive but it is difficult sometimes. I have 2 small children and for them I have to keep on fighting...God bless all with this condition, you're not alone.
It started with me when my mother got cancer. I developed anxiety and depression. The doctors put me on tranquilizers and antidepressants. Ended up in and out of the mental hospital. Eventually had ECT.
I have had multiple spinal and thoracic surgeries and have all kinds of plates screws, to cut a long story short. Wires etc. Even had my
scapula fixed to my ribs.
Ended up hooked onoxycont[in,
Because of the dystonia, I have had many botox injections
while I was put on methadone and clonazepam in the USA. This worked great for many years until the pandemic.
Now I am worse than ever.
The GP took me off methadone ( because the surgery was uncomfortable prescribing it. They even reduced the clonazepam.
Now the stress is unbearable.
I wake up in a panic with my heart racing every morning (the famous oxy horrors). Constant pulsative tinnitus in my muscles and head.
This is no life.
My brother shared this video with me and scrolling through the comments, I found you post. I'm very sorry you are going through all this. It looks like 5 months have gone by and you haven't even received a comment. I know there's nothing I can offer or anything I can say to ease your pains however I'm simply a strager encouraging you to keep fighting. I will offer up prayers to the one true God for you. If you aren't already, I encourage you to seek him yourself too. God bless you.
Proverbs 3:5-6
Proverbs 17:17
I was diagnosed last week with FND when I went to a movement disorder specialist for evaluation for a possible Deep Brain Stimulation procedure. After 2 hours of evaluation, he told me that I had FND and DBS at this time wouldn't be of value to me. He made several referrals including a couple of web sites. I have been researching this issue extensively. Thank you for your documentation it is very well presented and understood. I certainly hope things get better with you and others with FND. I feel very fortunate that I was lucky enough to have had a neurologist who recognized my issues and sent to others who also support the disorder. Be well my friend.
Thank you for this really useful video I am really grateful to you. I was diagnosed in Aug 2022 with FND after trying to get a correct diagnosis for six years. As a sporty active person it has been hard losing use of my legs and general function. I have refused all medications and therapies as I don't feel well enough to go through with trials and experiments. Instead I attend my old karate class and do a fraction of what I can manage in terms of self physio. I also find the samaritans an amazing support weekly to call instead of a prearranged set times of psychotherapy. This is much less invasive and gentle and supportive at times I really the emotional support to help me process events I find upsetting or challenging like adapting to being disabled after being able bodied all my life. I'll be fifty soon. getting the diagnosis has helped me understand what I am going through and adjust my life to be kinder to self and have more confidence to say no to people. God bless you and I wish you the best in being the strong lovely person you are.
I have been told that I have fnd and can't get my head around it sometimes I feel that it is not me but someone who has it but not me because it is just one thing after another it gets me so down and can not do anything about it and it takes everything from me and a whole lot more and people do not understand what is going on I feel helpless at times I wish I had never had this sometime I get so sad and I depressed and my mental illness stuffers like. bad things seize and a mini stoke no feeling down one side and stick hitting my head all the time.
Thank you. Just diagnosed. 😊 you explained me.. now I can just share this to everyone l know. 😊 you've helped me ❤
This is the best video I’ve ever seen about FND….even better than ones put out by professionals. I don’t think people can ever understand unless they live with it which is why I feel this video is awesome since unfortunately you suffer as well. I’ve had basically ever system of my body affected except seizures. I’ve passed out though. It’s so humiliating when you are standing there filling out papers and the person is staring at you because you don’t know what the year is. Or worse … not even recognizing people. I have huge movement issues … very weak, legs just give out, tremors, jerking….. I fail neurological tests such as walking one foot in front Of another. I could go on and on because it has taken 17 years for me to get a diagnosis. I can’t work, have zero support… it’s just my daughter and I. It’s extremely isolating which people think…., just go out of the house. First …I feel like I’ve ran 1000 miles the second I get out of bed. Simple things such as a shower wear me out. I get what I call flareups where problems are even worse. I have no friends and live in an isolated area to begin with. I had to go almost 4 hours away to a movement clinic which I had never heard of. It’s part of a teaching hospital. I highly doubt anyone had even heard the word FND here.
I think I have FND, I'm not diagnosed but I've been getting what I call Psychological paralysis in response to strong negative emotions for as long as I can remember. I googled psychological paralysis and FND was the first result.
I'm at peace with getting it because, well why shouldn't I be? It only gets in the way of overall functioning in life when it's happening a lot due to some other mental issues I'm having, and It's been happening forever, so I'm kind of used to it.
The attacks are horrible, especially when you are out in public. I feel really awkward and embarrassed when I'm having them, so if you think you feel awkward and helpless when trying to intervene, I feel even more awkward and helpless.
I don't think a diagnosis would help me directly, but it would help those around me to understand that these symptoms are real, not put on and give them a condition they can learn about and understand. I don't want treatment for my condition because I feel I can manage well enough as it is when my mental health problems are in check. It is only an issue when they are not.
Thank you for explaining this in a way I can completely understand. It's been very frustrating not getting a very clear idea from my doctors. I have so many of the symptoms you've stated and was starting to make myself believe they're in my head. I even started to find time missing as if I wasn't there but haven't moved. Like a blackout but only for 5-10 minutes at a time. Also I'm am constantly switching from insomnia to being so tired I can't stay awake. But again, thank you, I truly appreciate it.
Great explanation
Likewise, I was diagnosed with it. It is debilitating and life changing
Thankyou for taking time out to make this video I got diagnosed last week with fnd the information was very helpful
Thank you for you video Steve it was very clear and informative. I have recently been diagnosed and feel your pain and frustration.
I'm thoroughly glad you like the video. If you have any questions, I urge you to check out FND International. Feel free to shoot me a message.
This simply means that your doctors don’t know what is going on. They need to do better so you can get better.
I was diagnosed with FND in early 2021. Soon after, I increased the antidepressant Pristiq to 100 mg from 50 mg. My tics increased in both frequency and intensity. They became quite violent. More scarily I started losing consciousness whenever I urinated. It only lasted a second or two, but was very scary. My GP weaned me off Pristiq and I began taking 50mg sertraline. My tics are must gentler and less frequent and I no longer lose consciousness. Thank you for this clearly articulated, factual and straight forward video.
Its so frustrating trying to explain to people that it has nothing to do with my emotions. Like I’ll be on the toilet and itll happen or sleeping or showering or walking and itll happen.
Absolutely brilliant. Well done. I've had to cope with FND for over 20 years now, with very little support and I have found that it is only in the last few years that it's openly recognised. Your steady pace through much of what FND is about is just right and wonderfuly clear. Best wishes.
I have all of those and more! Its horrendous!
I was diagnosed with fnd. Thanks for this video
Thank you for the information it was very helpful. God bless you.
Thank you for sharing
I have had so many of the symptoms you have and have been diagnosed a few weeks ago. I feel like a hypochondriac and now worry, when do I go to the doctor for pain or problems, I feel stigmatised in a way.
I recently stopped sertraline because it made me feel drunk also. I find amytriptaline food to help me
Sleep and take the edge off my anxiety.
Thank you for this video!!!
Thank you for the information
It's a well presented video and you have a great voice for presentation.
Thank you kindly ^_^
A³
Hi Steve my name is Isabella I’m 11 and I have fnd one day I couldn’t move both of my legs we called the doctor they said go to the er I had a lumbar puncture and stayed in the hospital 🏥 for 2 weeks and 1 week in a rehab hospital so I get your pain 😀🙂🙃
At your age, I would have been an absolute mess. You seem to have a good attitude, which will help you as you get older. You've got this - never give up.
Thank you never give up either
What is your status now? I have had US neuro now say after 2 abnormal muscle biopsies, tons of labs and abnormal emgs, fall with fracture, difficulty breathing and way worse in sleep that it must be FND. The fact that over 11 mos on Mestinon have regained a good amount of ability with determined walking help from dog, vision is no longer blurred with eye jitter and documented changes in sleep is immaterial. Clearly I dispute this. I do know that strong emotions make me so weak is hard to get out of chair and face feels heavy but that gets better with a small dose of Mestinon in 30 min.
I think i finally found what I was looking for.
Why does this seem to be disproportionately diagnosed in the UK? I swear I am one of the only Americans it this condition and it weirds me out.
Interesting question. Would be fascinating to see whether the statistics support your intuition; the healthcare system is much more centralised here in the UK so it is possible that the high disease burden of FND is more visible. One positive sign is that specialist FND clinics staffed with healthcare teams dedicated to FND diagnosis and treatment are becoming more established in the UK. My partner is a neuro physio and throughout her 30-year career she has observed very high proportions of FND sufferers in general neuro clinics. Several of her close colleagues have recently moved over to work full-time in specialist FND centres.
I am Australian and I am going down this road.
Go to Facebook and there are a few groups for FND. One is FND Hope US & Canada. People post about all kinds of problems. There are just more researchers in the UK I think.
Oh hi
Saying theres no cure isnt helpful..Im worried enough already and my neurologist told me his clinic has very good results!
I appreciate that. One thing to bear in mind is that it's been a while since I first uploaded this video and knowledge of FND is moving surprisingly fast compared to what was being said at the time. We have TREATMENTS, but they're not cures. Basically, as the FND community explains, FND is something we learn to live with, rather than cure.
That's not to say it will NEVER be cured, but certainly no cure exists at this time, but yes it can be treated. It's an important distinction.
@@SteveJones313 Well ive heard the symptoms are reversible so i really hope my current state is improved as im at my wits end
There is NO cure for this disorder, the neurophysics can help us get the FND fits under control.
I have it also 💕
It's misleading to emphasise seizures above other manifestations of it
Unethical diagnosis.
😂🤭pause video."just in their head?"☝️✍️write this down.sometimes it actually is.& physically.😉However! For all the education& brains?of medical professionals?They can't or couldn't?😉say ? (Sorry.We don't know.We're just practicing medicine.😉) 😎continue video.
🤔🤔no.keep on pause.& I will continue cause I wasn't done speaking yet.😉👍😎🤔I was told accidentally by a nurse."oh!that's right.you're the one who had TBI?"🤨🤔☝️what's TBI?=no response.😳 "oh nevermind."& yes.She'd find out if something could be done to help the explosions going off in my painriddled brain& body.😉
Continue video.😎
If u can send me an email I will be glad to share my recovery story