I’m currently studying FND for my thesis and your video was wonderful at providing a glimpse of what it is like to face this difficult diagnosis. It’s very under-studied despite being relatively common, and I hope we can get a better understanding of it soon. Thank you for making this video and sharing your journey!
For your thesis. They have recently shown by scanning MRI that FND is a physical condition caused by hypoxia of certain areas of the brain, The blood supply gets diverted causing a lack of oxygen in certain areas. Unfortunately, they don't know how yet, It still has a psychogenic component to it but they don't know how these are linked yet. The mind is an extremely powerful thing and can do things you would not believe. A woman sees her child run over and picks up the car to help her. Compare with maladaptive daydreaming. Some people can create different realities and identities in their minds. They use stereotypy to trigger dreaming.
I know. How can you say cause is unknown and then blame in on them anyways lol. I had a doctor at the hospital tell me if I just believed I could walk again I could and I fell. It's embarrassing and invalidating to even suggest honestly. Stress can cause heart attacks and strokes so I don't even understand why that's where it stops. I'd much rather have them say we don't know why this happens, but physical therapy and taking care of yourself can help you live a better quality of life. I was in a severe confused state as well and I broke down crying because I thought I did this to myself..
I was diagnosed yesterday with FND after two years of being in & out of hospital.your story broke my heart, (a over flow of emotions), as I went through & still have a lot of the same symptoms. The point is Thankyou so much for sharing.
This is so encouraging. It bothers me that people with FND have had such a rough go of it - that many doctors (at least here in the US) don't treat it with the support it deserves because they don't understand it. It's amazing that you've taken this often-dubbed "unexplainable" illness and, rather than feel overwhelmed or frustrated by the diagnosis, determined to overcome it regardless! You are amazing and I am rooting for you!!!
Thank you for this video. I'm a military veteran (USMC), and have been dealing with FND related to other damage for the past 15 years. I've mostly had to treat myself due to misdiagnoses, and know how frustrating it can be. I'm glad to see you were doing so well at the time you posted this, and hope that you've continued to improve! Showing yourself at that phase of your life is a truly couragous thing to do. Thank you.
Having not only danced, but also been a martial artist I learned to push through Things physically and mentally. Seeing a post from a USMC veteran holds a lot of weight for me. Thank you so much.
OMG. This gives me so much hope. I was just diagnosed with FND in 12/2022 and it has turned my life upside down, but watching this has given me hope. Thank you for sharing.
I’ve finally been diagnosed with FND after 5 years of dizziness, nausea, foot drop, hand weakness, brain fog, and more. I’m a 55-year-old female. First, after head to toe MRIs, a spinal tapping, countless blood tests, and numerous specialist visits, they told me I have MS, then they said it’s Benign MS, migraine, and then “it’s all in my head”. Then, after five years of a lot of disappointment, despair, and suffering, they say it’s FND, for which none of the Drs and specialists gave me a treatment plan. A psychiatrist even called it a “non-existent” condition. My life has been turned upside down. I’m a chiropractor but unable to see any patients since I’ve lost my left hand’s strength and am unable to stand up without wobbling. I have to use a cane to take any steps. Most of the time I use a walker around the house and a wheelchair outside. I also can not wash or blow dry my hair, drive, cook, go for a walk, or dance. I’ve had physical therapy but my weakness is not from my muscles but it’s neurological. I’m so glad you’ve recovered. Your story gave me hope. Thanks for sharing.
Hi, in 2010 my doctor sent me in hospital with a bleed behind my left eye saying I had a stroke I was in hospital for 3 months like everyone says they couldn’t find anything wrong with me even a stroke. I couldn’t say M’s and S’s and I couldn’t even sit up eat hold cup and walk.Forward to 2024 after having paid for a private MRI after having a really bad headache that I stroke this year. And it was only the consultant that looking into my back medical records that I was told yes told 14 years later that I got FND and how I was told was in a letter saying I was diagnosed years ago. And it was the first time I’ve ever heard of it in fact I at to look it up to see what it was. So for 14 years I told everyone that I had a stroke. I’m 62 now and I use an electric wheelchair as my left side is weaker than my right. So bless you and don’t let it beat you. X
I've had CP since birth, then FND kicked in at 45 Years Old. I traveled DJing around the world since 18 Years Old. Once the FND started I thought it was all over. After 4 years of self administered PT and training my brain at 49 years old, I took a trip to France, Holland & Spain all by myself to DJ. I Had the best time of my life and will cherish it forever. By the way I did not know about FND until 3 months ago. None of my Dr's have ever even mentioned FND. I had to do all the research and I'm happy I found all these stories and information.
Watching this was literally like watching a video of myself. The violent and debilitating leg tremors. My FND “happened” in July this year, I was totally okay, collapsed due to adrenal crisis, came around and couldn’t feel my left arm and both legs. Couldn’t walk since then. I too am in the UK and have had NO care, follow up, physio or anything from our “wonderful” NHS, just a website for FND scrawled onto a piece of paper upon my discharge from hospital whilst my dad physically carried me off the ward. This is what terrifies me, how will I ever get better without any correct intervention? I am so glad that you have received care, and were so unbelievably strong to power through such a horrible affliction. Wishing you continued health, healing and happiness! 💕💕💕
I just cried my eyes out. I’m 18 and woke up with my legs tremoring last November. I am under London St Mary’s and have been diagnosed for FND. It’s a scary thing, thank you so much for giving me hope❤️❤️❤️
I have trained my whole life to be a lab based scientist. Now I have this thing that's stopping me being safe in a lab. This really sucks, I hope we all make it though this
Totally feel your pain. At 44, engineering degree , msc, nebosh, all useless as not insurable in the workplace. And no driving license to boot. As a close friend said, this is not the end. Its an enforced new start! I can only hope he's right ! Stay strong
I cried so hard. I was diagnosed with FND and I have lupus, and it’s been a challenge and many, many tests to figure out what all I have. I decided a couple of weeks ago, that I won’t let it define who I am. Thank you for sharing your story! ❤
It's taken so long to be diagnosed for me. Knowing I'm not the only person to have experienced this is more comforting than I could ever express. My trauma has been around for a long time, and I'm in conversion therapy and physical therapy. It's going on two years dealing with it now, but I'm hopeful, and am so happy you got through it and had your beautiful wife beside you. Thank you for making this video!
Thank you for this. I underwent a lot of hostility from medical professionals here in the US, as well as refusal for testing and treatment. I always am grateful for people who share their stories so I can remind myself I was never faking it. Was diagnosed early 2012 but I'd had it for a while. The movements are consistent to how mine were in the beginning and through the flare ups later on. Hugs to you and continued strength and success. I hope you get to dance again!
Hi Jamie. Thanks for sharing, your story echo's my 17 yo Daughters Fnd journey. Sadly she developed tics, arm spasms and other symptoms, but these have mostly disappeared. The big challenge now is the fatigue. How have you dealt with that may I ask?
I'd just like to say how much this made me smile. I've just been diagnosed with FND and I feel so alone. The physio is taking weeks before I even get an appointment, I'm stuck at home away from my own freedom and my car etc and to just know that someone who clearly had it way worse than me has gotten over it so well means so much
Thank u so much for this. I was diagnosed with fnd a couple days ago and I’m only 15. I can’t take a step yet or even stand for longer than 30 seconds right now without fainting but thank u for showing me recovery is possible.☺️
Get your parents to take you to a proper doctor. At your age this shouldn't be happening and there's something very wrong. Stay away from neurologists too. Good luck
This video really helped me understand FND. My mum got diagnosed with it at the weekend, the way she walks etc is completely the same as in the video. She is currently undergoing physio and I am going to support her to learn to do daily tasks again. Its such a horrible thing with not much awareness or information about it, but honestly your video has helped me massively.
This is the most amazing information I have read in the last 7 weeks since being diagnosed. Thank you for sharing a positive message amongst all the "gloom" out there. You have encouraged me more. Best wishes and your continued recovery and journey.
Just wanted to add my thanks for a great video. I've had FND for two years and I agree with everything in your video. After pushing myself hard I managed to go skiing a month ago.
I just found your video. I was only recently diagnosed, with the wrong term for the disorder, from the third neuro I went to, who made it very clear he would not help me any further than getting a diagnosis. Your story gives me hope that there is a light at the end of the tunnel, because all I've seen so far is a lot of dark. Thank you for posting this, and sharing what you've been through. I know I'm a total stranger on the internet, but I'm proud of you for all the hard work you put in to get better!
Thank you so much for sharing this. I have been diagnosed with fnd this week after 4 years of seeing multiple specialists and being discharged and told what it wasn't. I was able bodied and lived an active life. Now I have difficulty breathing every few minutes, can't walk over 10 feet and almost fall asleep whilst standing plus more symptoms. I decline every 2weeks and proper treatment as yet hasn't started and could be a 2year wait or longer. I feel I may not make it but seeing your video has helped me so much today. Love and hugs to you I'm really grateful 🙏
Thank you for sharing your story! I’m so glad you had supportive people who believed you and believed in you, and you didn’t give up. Our FND symptoms are similar although I had to figure out all the distraction techniques myself. I’m glad you had a good physiotherapist and diagnosis early on even though it must have been so difficult. It was so beautiful seeing your dancing again at the end.
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I just was diagnosed with FND last week. I've had some trouble accepting this. This video has helped me a lot. Thank you so much. I can't tell you how much I appreciate hearing your story and how much hope its given me.
Thank you so much for this video. 😭😭😭😭😭 My boyfriend has suffered with FND for six years and never got a diagnosis until this year. He is still not getting proper care here in the States in Augusta, GA. He has racked up so much medical debt and is where he was six years ago. I'm begging God for support like what you have received, for medical staff who truly care and are actually helping, and I am so incredibly happy for you. Thank you so much, again, for sharing this, and may God bless you so much.
I’ve developed functional tics and have dealt with them for 2 years now. I’ve dealt with functional speech symptoms since 2013. Between struggling to even speak a syllable for hours at a time to giving myself whiplash via tics has brought me to your story as I struggle for answers and treatment. When a therapist at the VA told me I won’t ever be cured, I lost hope and shut down. Really feeling it again lately with the struggles of nursing school. Your story gives me hope to keep trying ❤
Thank you for sharing, I have very recently been diagnosed with FND, this is after 5 years of self managing and being told my periodic symptoms were stress related. My recent episodes started last July which was then diagnosed as Stroke, it was not until i had repeated episodes, 7 in five months that an A&E consultant mentioned FND to which I was a bit confused by, and thought she was very quick to judge, because all my symptoms were stroke related or TIAs (mini strokes), I am now grateful to her 'quick judgement' as this is exactly what it is. I am making full recovery, although every day is a new day and new challenges, however, I function normally, although my speech becomes a bit slurred as i tire easily, and my balance still goes now and again, but atl east I am aware of this and I am not living my life thinking I am having mini strokes. So although I am feeling better and going about my life as good as i can, and getting back to work slowly, and this will continue slowly and not the 24/7 job i used to do, I have time for me and take much better care of me now than i ever did. So there is hope and keeping focused on that is what kept me and still keeps me going.
I was told it bluntly,given the information sheet.No one explains whether I get better. Thank you very much for your encouragement.I'm on the way of recovery. 😊🙏
I was diagnosed with FND in August 2022, after I collapsed at work in april 2022 and couldn't feel my body. I am still waiting for doctors. Is hard, I am not able to stand more than couple of minutes (not able to cook without breakes), dragging my legs after myself, shaking, constant panic attacks... I am very happy for your recovery.
Thank you for this positive and encouraging account of FND. I've been battling it for about 8 months now and it's been a terrifying experience which has taken my mind to some very dark places. Your account of this condition lifts my spirits and gives me hope for the future whereas up to this point I've alternated between deepest depression/despair and a grim determination to just somehow survive until I can't take any more. Once again many thanks and good luck on your journey through life.
I have two years of them telling me I'm healthy... I've also had them try to say it was in my head until I started falling. I'm still on my journey to learn what's going on... I'm hoping to figure out what it is soon.
I was a teacher at a dance college and this happened to my most promising student after her graduation. It was horrible but she's doing a little bit better know.
Your video is inspiring, thank you! I myself have been diagnosed with FND and have also lost the ability to use my legs, also shake and have incredible episodes of pain. Have now started my rehabilitation and your storey has not just given me hope but confidence in the ability to return some sort of normalcy. I will update you with my progress in a little while
I’m 18 years old and got diagnosed with FND yesterday. I am pretty much wheelchair bound and cannot do a lot of things for myself such as personal care, cooking, walking etc. But this has given me hope. I was diagnosed with rheumatoid arthritis and fibromyalgia at age 16 after suffering and undergoing tests since the age of 9. And in 2017 was also diagnosed with IIH (idiopathic intercranial hypertension) as well as being treated for lupus. It’s good to see that there is hope that things will get easier and I hope you continue to get stronger each day. Thank you for sharing your story. It means a lot.
Thank you for your video! I also have FND. I am a teacher and in 2015 when I was training there was a traumatic incident and, once I had dealt with it, I went to the staff room and collapsed, I couldn't move my legs and arms for hours and could only speak in grunts. I thought it was a one off incident and all the tests came back that I was healthy. However it started to happen more after about 6 months. After an exhausting school trip, the episode was quite powerful and I had no speech. I got worse and worse over the course of 6 months and was bed bound. My body was very weak but my head was light - I wasnt able to think so much so I felt little stress. It took 18 months for a diagnosis and once I was diagnosed, I started to get better! I had support from St George's hospital in London from a lovely Psychoneurologist from 2017-2019. 7 years on, I'm not cured but I know my triggers (hunger, exhaustion, overwhelm) and I know how to distract myself to stop one coming on. I dont always have the strength to do it, however. I have learnt so much from the experience. It has been devastating, a huge weight on my family and my career at times but I feel that I have become more appreciative because of it. Everything has it's dark and its light 💚
Thanks so much for sharing. My daughter was diagnosed with FND last year. She's 21 and its been a very difficult journey but the physio is definitely helping. Blessings of healing to all those diagnosed with FND and any other illnesses.❤❤❤❤
I was a professional dancer and got diagnosed in 2011-2012. They told me it was psychological and conversion disorder which baffled me. I have had months and years of no symptoms and then they come back. I had no symptoms for 2 years and now they came back. You’re lucky you just kept getting better. Mine keeps coming and going.
After going everywhere since 2007 and becoming exhausted without a correct diagnosis, I'll try a FND specialist! Thank you for this , may God bless you!
Watching this just brought me to happy tears for you! I can now be more determined to face my own challenges with FND - mine is absolutely less severe than your experience. Your video will helps 100s if not 1000s of people and hope it reaches more people like myself. I hope by now you are still recovering and doing those cart-wheels over and over! So inspiring to watch you brave through this tremendous challenge. The sad part is that until you start walking, talking or going out - no one sees your issue but thinks you are drunk because I walk so awkwardly. I never give up hope and work with both a physical therapist and vision therapy. Thank you so much Jamie - you are brave soul and you have given me hope! 😍
This must have been so scary. Well done for not giving up. I have no doubt that this video will inspire many, many others. Truly admirable, thank you for sharing this. From one FND patient to another
Thank you so much for this video! It gave me so much hope that i needed right now. Was diagnosed a month ago after a year of trying to walk again. My walk is very very similar to yours. But your video makes me feel like 'Yes, I can heal from this' . Thank you, thank you, thank you ❤❤❤
Thanks so much for this video !!! I have had FND for almost 6 years and now finally hoping to get rehab and get back to who I was before. I was a very active person doing all kinds of sports and now stuck in a wheelchair but ur video gives me hope to one day I could be able to walk!!! U are amazing !!!
Sitting here crying at this. I've wanted something to show my family that helps sum up my life and there you were with this. I had my first fnd attack 2 years ago, started with back pain and within 14 hours had lost sensation in my right side and my bladder. I was on a Zimmer for 9 months. I lost full use of my bladder, couldn't sleep and couldn't walk unaided. It's now been 2 years and I'm finally down to 1 crutch but sadly developed non epileptic seizures 5 months ago. I watched this and it reminded me of how far I've come in 18 months to actually be walking even if it is one crutch, I retrained my hand to move and grip using mirrors , you've given me so many tips on things I want to try, in a world where fnd is barely spoken about. So glad you got to a place where you're happy. Much love ❤️
Thank you so much for posting this video and sharing your story Jamie ♥️ you are so incredibly strong and I’m so grateful to have come across your video. it’s given me so much hope this year. I was diagnosed with FND at the beginning of the year having struggled with symptoms for many years. Seeing and hearing your story is the closest I’ve seen to the same symptoms and what I’ve been experiencing, I’m currently rehabilitating with neuro physio each week. Thank you for having the courage to share it’s made me feel like I’m not alone. Sending so much love to you ~ Francesca ♥️
Struggling with this right now unfortunately. Looking forward to recovering and getting back to "me" again. Happy you had a great support system and are doing well now.
I was just diagnosed with FND yesterday. After being tested for MS over and over again, I get to have all the symptoms, but a diagnosis of crazy lady syndrome. My family thinks I'm faking, and has all along. 😢
I’m so sorry! I just went to the ER once presenting with neurological symptoms. Because they couldn’t find anything wrong with the brain scans they automatically labeled me as having FND. I will not be able to work like this, this label is going to ruin my career. Makes me sick how lazy some Doctors can be.
Wow !! The ONLY reason I’m watching this is because today April 2020 is World FND month and a friend of mine posted on IG about her experience with FND which I really knew nothing about. I’m so amazed at your sudden deterioration but incredible progress. The brain is so amazing, but the human spirit is even more amazing. Thank God you made it through, this was quiet a testimony. Thanks for sharing.
Thanks Jamie, It's videos like your that give me hope to get back to a some sort of normal life and do the things I love doing. Only diagnosed a couple of months ago I have been struggling with the lack of information about FND. I also have a great physio, Krystle, who has been a godsend to me and restoring my beliefs that I will get better. Hard not to get FRUSTATED at times, the simple things that I used to take for granted have turned into hard or impossible tasks. Thanks again and take care, Shane
It is incredibly hard being super able and strong and losing capacities that made you who you are. I am glad you've recovered so much. I still suffer vertigo, facial palsy, and fatigue from a trigeminal infection and it is hard.
So very good. The determination to aid your improvement was evidenced by your determination to dance. I would very much like to know what medication you are taking. I have been prescribed baclofen and then Dantrium, both of which I didn’t get on with and currently I am prescribed tizanidine
thank you for this, i have been paralyzed from the waist down since february and dealing with learning to walk again since! your story is so modivating and makes me feel less alone though it all! thank you
I've had FND for four years. I was not diagnosed by a doctor, but found out myself from the internet. I've beaten my seizures, controlled my ticks, learned to walk and talk again by myself with no help from medical professionals. But I feel my progress has flat lined in the last two years, nonetheless I keep trying to improve. Some help from professionals would be a godsend, but I don't know if or when it will be treated here.
Amazing you’ve got so far on your own. I still have things I am constantly working on too. I do hope you get help one day but if you’ve already come this far, I’m sure you will keep improving
sam autio Hi. How did you get rid of tics. Find slowed breathing or distraction can reduce or stop them but then they often flare up again. Sometimes as soon as you look away from the distraction.
For The tics un fnd maybe if you go to The very cause...you get It...and thats dissociation. internal family sistem and parts work may help Could be you have full por partial did. Trauma therapists trained in body work s uch as somatic experiencing could work and help, not only The fnd, but The underline cause and very damaging problem for The whole persona
@@sa.m3070 disassociation and trauma have been ruled out by mental health professionals. In my case the cause of my FND is a mystery. But I have since found employment, getting back to work has certainly helped.
@@shl945 focusing on my breathing certainly helped. But it was a lot of work, like all day every day, stopping tics that will inevitably happen. I also focused on other things, anything I could, such as listening to my footsteps as I walked, the sun or wind on my skin etc.
Thank you so much for this video! My 11 year old daughter was just diagnosed with FND :(( she’s mostly okay during the day, but at night, her tremor episodes get really bad. Uncontrollable kicking and flinging of arms. It’s so scary for us, so I know it’s terrifying for her. This video was so inspiring!!! Any tips for helping her get through these episodes quickly? We’ve found that drawing, being on her iPad, and counting backwards from 100 sometimes help, but we’ll take any help we can get!
I run a PNEE clinic here in the US. It is actually the highlight of my career in many ways. Thank you so much for sharing your story, what a brave and strong soul you are. ❤
Thank you so much for sharing your story Jamie. I have recently been diagnosed with FND and I there are days where I feel lost. It's like my Drs have wished me luck and sent me on my merry way without any support. Watching your story and how positive and strong you are is so inspiring and has filled me with hope. Sending you much love.
I’ve had episodes for 15 years now. I was diagnosed with FND in 2019. bounced back and forth between neurology and therapy a few times now. Neurologist says one thing, therapist says a different thing. It’s maddening. Thank you for making this video and showing a clear example of what FND journey looks like and that there is hope.
But you refused to give up! God is using you to save lives. Im not sure if you believe or not but through your experience the way your helping others by sharing your story is priceless! God Bless you & thank you!
This was inspirational for me. I was recently diagnosed with FND. You and I have the same gait disturbance. So I feel a kindred connection to you. Thank you for sharing your amazing story. I now have hope.
I just found this video. I was diagnosed after balance issues and tremors on one side. Thanks for this, it was so hopeful!! I hope you are still doing well!!
Thank you for sharing your story. I have been diagnosed with FND. I had a neck injury and things started from there. Sometimes I can’t move properly, I shake and it’s been very overwhelming. Your video was very helpful. 👍
Is very hard to see this video for me. I'm so glad you are recovered. Congratulations and thank you for sharing. My wife is diagnosed with FND and she can't walk, write, dress herself and talk properly (and many more things) for 2 years at this moment. I hope we can make it. We will continue fighting.
Thank you for sharing this video . .My other half was diagnosed with this condition years ago . She walks very similar too your self. She had to give up her job as a nurse sadly .Her tremors effect her lower part of her body more use to be very active. She underwent several major knee surgery and it was decided she has FND they said it was caused from the surgery saying her body had gone into some sort of shock to her system. She was found to have has Ehlers danlos syndrome wasnt diagnosed until in early 20's .she also has dystonia and complex regional pain syndrome to name a few syndromes. Glad your doing so well at the end of your video Big hugs
I've just been formally diagnosed after living with it for years. Your video though frightening was very inspirational. Thankyou for raising awareness x
This happened to me a few years ago in my early 50s. Seeing your video made me cry. I still have problems with stairs and throwing my head back and shaking fits but they are much better with Clonazepan even though I felt very drugged up at times. I got used to the meds but I wish I had seen your video sooner as I was terrified and appalled by what was happening to me and became reclusive. Like you my dogs get me walking even if it is me slowing two pugs down. Our niece has just been diagnosed too with similar and I am going to share this with her as no one Is really talking to her about it even though I want to. A big thank you for posting this. Love GerryxXx
I was diagnosed yesterday with very similar symptoms and your video has really helped me! Thank you so much! I hope you are well today and still going from strength to strength!
Thank you so much for sharing your story! im in medical school and seeing what this condition presents like is very helpful!! good luck with your continued recovery💝
Thanks for giving me hope I was diagnosed yesterday for FND some people a taught am faking , because all my mri says negative, meanwhile I can’t move my right arm and leg I have to drag it which is affecting me both home and work , I can’t do anything am glad you gave me hope that I will be able to walk again
I have just recently been diagnosed with FND along with Benign Fasciculation Cramp Syndrome and Spasmodic Dysphonia. I have had horrible bouts of seizure like activity with CONSTANT muscle spasms/contractions. They’re excruciatingly painful! The neurologist had me on an anticonvulsant called Lamotrigine that caused the symptoms to even become Worse! This whole thing has been an absolute nightmare!! I went in yesterday to get Botox injections, hoping it would help the muscles to release in my head, neck & shoulders, but the neurologist opted to not do them. She figured the risks outweighed the benefits. I’m grateful for this video & seeing your journey to healing. Gives me Strength to push forward to mine.
Thank you for sharing ,i was iagnosed last year after 12 years ,firstly i was told its all in my head ,even my dr said dont phone an abulance your wasting there money ,just go too bed and sleep it of ,what the hell this is real not pretend ..i couln't walk or talk for 6 months .but i continued to fight through ,now im stil very weak still have attacks but im able to walk short distances ,i do fall alot ,still having seziures going in now for an EEG with video recording ,i had topay private to get my results after 12 years ...Good luck for your future ..
thank you for sharing your experience. I have recently been diagnosed with FND and your video has been one of the most helpful and hopeful things I've found about the condition. I've shared it with family and friends so they can better understand what I'm experiencing and it's been really good for my teenage daughters, who have been anxious about my health for the past few years when doctors were telling me there was nothing wrong with me. You're a star
Amazed at your hard work and progress. Congratulations on your results, your strength is an inspiration. Health is wealth... wishing you the best above all else!
Thank u! I just got diagnosed after being in hospital 9 days. This is very inspiring!! Thank u for showing the way of letting me know it’s possible and not gonna make it impossible
I was just diagnosed last night and I am so scared ,hopeless I had a resident tell me it was all in my head but after doing research I learned she was the uneducated one any advise
Melissa Ladid there are lots of people uneducated about FND, this is something we need to change. Surround yourself with people who love you, and believe in you, but most importantly believe in yourself. I wish you all the best x
@@abya2104 I am much better. I was prescribed Gabapentin 3/24 started at 300mg a day and it was a turning point for me. At first I got better very slowly and then it seemed all at once. I feel like now I am pretty much back to normal. I'm still taking 600mg Gabapentin a day not wanting to take the chance of coming off of it quite yet.
I have just been diagnosed, with FND. It started with left side of my mouth drooping causing spasms and body weakness and bad speech. Thank you for sharing this.
Thanks to Mike Shipman for bringing this to my attention. What an amazing spirit you have. I am a Healthcare Provider in New York State and have never heard of this, even with a strong background in Neuro. I am always looking to learn so I can best help my patients. Best Wishes to you and your continued fight. You are a very special person. Hugs to your wife for her undying support and love for you. So important.
3 weeks ago I had a fall. Tremors started in my foot and every day they got worse until they stool my whole body like seizures. I was hospitalized and tested as well as put in physical rehab for people with strokes. It has been 3 weeks and every day they still grow worse in small ways. I can’t walk without a walker and the more tired I get the worse my tremors get. My whole body will seize up like a rock and I can’t move it. It also clenches my throat and chest so I can’t breath. Right now we are struggling to get help. The doctors all say they can’t do anything to help me and are only willing to give me referrals to the phycologist. In the past 3 days stuttering my words have developed and have been getting worse as an example of a more recent evolution. It’s really really scary. Thank you for sharing your story. I hope that treatment becomes more available for FND.
Thank you so much for this video, I was diagnosed two weeks ago with FND and have been looking for someone else's story, it's so lovely looking at these comments to know I'm not alone.
I was just diagnosed with FND yesterday and I had the seizure like walks. Mine wasn't as bad as yours, but this video made me feel like I'm not alone. I just want to say thank you.
Max Games I wish you all the best in your recovery. There is a charity called FND Hope, they have a Facebook group that can be helpful to get information and ask questions. All the best x
I'm all in tears watching your video. Well done girl. I'm trying to self diagnose and don't know where to start. In my country there is not much what doctors can do.
Thank you so much for this, Jamie - I have FND, and I found it so frightening until I saw videos like Miranda's and yours and realised that there were people just like me who had made such incredible progress. xxx
I’m currently studying FND for my thesis and your video was wonderful at providing a glimpse of what it is like to face this difficult diagnosis. It’s very under-studied despite being relatively common, and I hope we can get a better understanding of it soon. Thank you for making this video and sharing your journey!
Thank you for making FND your thesis. There is a great need for educating others and research. Best wishes on your completion!
For your thesis. They have recently shown by scanning MRI that FND is a physical condition caused by hypoxia of certain areas of the brain, The blood supply gets diverted causing a lack of oxygen in certain areas. Unfortunately, they don't know how yet, It still has a psychogenic component to it but they don't know how these are linked yet.
The mind is an extremely powerful thing and can do things you would not believe.
A woman sees her child run over and picks up the car to help her.
Compare with maladaptive daydreaming. Some people can create different realities and identities in their minds.
They use stereotypy to trigger dreaming.
Please, what ever you do, don't tell people it's in their head or not really sick.
I know. How can you say cause is unknown and then blame in on them anyways lol. I had a doctor at the hospital tell me if I just believed I could walk again I could and I fell. It's embarrassing and invalidating to even suggest honestly. Stress can cause heart attacks and strokes so I don't even understand why that's where it stops. I'd much rather have them say we don't know why this happens, but physical therapy and taking care of yourself can help you live a better quality of life. I was in a severe confused state as well and I broke down crying because I thought I did this to myself..
I was diagnosed yesterday with FND after two years of being in & out of hospital.your story broke my heart, (a over flow of emotions), as I went through & still have a lot of the same symptoms. The point is Thankyou so much for sharing.
This is so encouraging. It bothers me that people with FND have had such a rough go of it - that many doctors (at least here in the US) don't treat it with the support it deserves because they don't understand it. It's amazing that you've taken this often-dubbed "unexplainable" illness and, rather than feel overwhelmed or frustrated by the diagnosis, determined to overcome it regardless! You are amazing and I am rooting for you!!!
0...
Thank you for this video.
I'm a military veteran (USMC), and have been dealing with FND related to other damage for the past 15 years. I've mostly had to treat myself due to misdiagnoses, and know how frustrating it can be.
I'm glad to see you were doing so well at the time you posted this, and hope that you've continued to improve! Showing yourself at that phase of your life is a truly couragous thing to do. Thank you.
Having not only danced, but also been a martial artist I learned to push through Things physically and mentally. Seeing a post from a USMC veteran holds a lot of weight for me. Thank you so much.
OMG. This gives me so much hope. I was just diagnosed with FND in 12/2022 and it has turned my life upside down, but watching this has given me hope. Thank you for sharing.
me too!!
I’ve finally been diagnosed with FND after 5 years of dizziness, nausea, foot drop, hand weakness, brain fog, and more. I’m a 55-year-old female. First, after head to toe MRIs, a spinal tapping, countless blood tests, and numerous specialist visits, they told me I have MS, then they said it’s Benign MS, migraine, and then “it’s all in my head”. Then, after five years of a lot of disappointment, despair, and suffering, they say it’s FND, for which none of the Drs and specialists gave me a treatment plan. A psychiatrist even called it a “non-existent” condition. My life has been turned upside down. I’m a chiropractor but unable to see any patients since I’ve lost my left hand’s strength and am unable to stand up without wobbling. I have to use a cane to take any steps. Most of the time I use a walker around the house and a wheelchair outside. I also can not wash or blow dry my hair, drive, cook, go for a walk, or dance. I’ve had physical therapy but my weakness is not from my muscles but it’s neurological. I’m so glad you’ve recovered. Your story gave me hope. Thanks for sharing.
Hi, in 2010 my doctor sent me in hospital with a bleed behind my left eye saying I had a stroke I was in hospital for 3 months like everyone says they couldn’t find anything wrong with me even a stroke. I couldn’t say M’s and S’s and I couldn’t even sit up eat hold cup and walk.Forward to 2024 after having paid for a private MRI after having a really bad headache that I stroke this year. And it was only the consultant that looking into my back medical records that I was told yes told 14 years later that I got FND and how I was told was in a letter saying I was diagnosed years ago. And it was the first time I’ve ever heard of it in fact I at to look it up to see what it was. So for 14 years I told everyone that I had a stroke. I’m 62 now and I use an electric wheelchair as my left side is weaker than my right. So bless you and don’t let it beat you. X
I've had CP since birth, then FND kicked in at 45 Years Old. I traveled DJing around the world since 18 Years Old. Once the FND started I thought it was all over. After 4 years of self administered PT and training my brain at 49 years old, I took a trip to France, Holland & Spain all by myself to DJ. I Had the best time of my life and will cherish it forever. By the way I did not know about FND until 3 months ago. None of my Dr's have ever even mentioned FND. I had to do all the research and I'm happy I found all these stories and information.
Watching this was literally like watching a video of myself. The violent and debilitating leg tremors. My FND “happened” in July this year, I was totally okay, collapsed due to adrenal crisis, came around and couldn’t feel my left arm and both legs. Couldn’t walk since then. I too am in the UK and have had NO care, follow up, physio or anything from our “wonderful” NHS, just a website for FND scrawled onto a piece of paper upon my discharge from hospital whilst my dad physically carried me off the ward. This is what terrifies me, how will I ever get better without any correct intervention?
I am so glad that you have received care, and were so unbelievably strong to power through such a horrible affliction. Wishing you continued health, healing and happiness! 💕💕💕
I just cried my eyes out. I’m 18 and woke up with my legs tremoring last November. I am under London St Mary’s and have been diagnosed for FND. It’s a scary thing, thank you so much for giving me hope❤️❤️❤️
❤️❤️❤️
Hi Elizabeth, were you on any ssri medication at the time?
Was 18 to when my arm started shaking until it became shake attacks at work I lost my job took nine months to figure out it was FND
@@gethsoldsmith did you take anti depressants
@@BenQotsa yeah effexor that's what did it I also made a habit of disassociating to cope with life pain which can cause it to.
“It’s not impossible...it’s very hard” - now HARD I can do!! 💗
Just got diagnosed yesterday and I'm a Fighter...we all are..#FNDSURVORS🎉 Together we will ❤
You must be my sister. Nothing is impossible!❤️
I have trained my whole life to be a lab based scientist. Now I have this thing that's stopping me being safe in a lab. This really sucks, I hope we all make it though this
we are going to make this through this cus you know what all of us wwe are strong and we can all do this!!
Totally feel your pain. At 44, engineering degree , msc, nebosh, all useless as not insurable in the workplace. And no driving license to boot. As a close friend said, this is not the end. Its an enforced new start! I can only hope he's right ! Stay strong
I cried so hard. I was diagnosed with FND and I have lupus, and it’s been a challenge and many, many tests to figure out what all I have. I decided a couple of weeks ago, that I won’t let it define who I am. Thank you for sharing your story! ❤
It's taken so long to be diagnosed for me. Knowing I'm not the only person to have experienced this is more comforting than I could ever express. My trauma has been around for a long time, and I'm in conversion therapy and physical therapy. It's going on two years dealing with it now, but I'm hopeful, and am so happy you got through it and had your beautiful wife beside you. Thank you for making this video!
I wish you all the best in your road to recovery x
Lovely video, great to see such an improvement. Hope is enormously beneficial to those with FND. Bless you
Thank you for this. I underwent a lot of hostility from medical professionals here in the US, as well as refusal for testing and treatment. I always am grateful for people who share their stories so I can remind myself I was never faking it. Was diagnosed early 2012 but I'd had it for a while. The movements are consistent to how mine were in the beginning and through the flare ups later on. Hugs to you and continued strength and success. I hope you get to dance again!
A Walking Theory I’m sorry you’ve had issues with the medical professionals, they need to be re-educated. Hope you continue to get better x
Hi Jamie. Thanks for sharing, your story echo's my 17 yo Daughters Fnd journey.
Sadly she developed tics, arm spasms and other symptoms, but these have mostly disappeared.
The big challenge now is the fatigue.
How have you dealt with that may I ask?
I'd just like to say how much this made me smile. I've just been diagnosed with FND and I feel so alone. The physio is taking weeks before I even get an appointment, I'm stuck at home away from my own freedom and my car etc and to just know that someone who clearly had it way worse than me has gotten over it so well means so much
I also have FND and your story is similar to mine. Well done you for managing your symptoms. I'm also at the stage where I'm getting my life back. X
mandiloubell all the best in your recovery. Stay strong!
May i know what were your medications were?
Thank u so much for this. I was diagnosed with fnd a couple days ago and I’m only 15. I can’t take a step yet or even stand for longer than 30 seconds right now without fainting but thank u for showing me recovery is possible.☺️
Sorry to hear you have FND. I wish you all the best in your recovery. Don’t give up x
Get your parents to take you to a proper doctor. At your age this shouldn't be happening and there's something very wrong. Stay away from neurologists too. Good luck
This video really helped me understand FND. My mum got diagnosed with it at the weekend, the way she walks etc is completely the same as in the video.
She is currently undergoing physio and I am going to support her to learn to do daily tasks again. Its such a horrible thing with not much awareness or information about it, but honestly your video has helped me massively.
This is the most amazing information I have read in the last 7 weeks since being diagnosed. Thank you for sharing a positive message amongst all the "gloom" out there. You have encouraged me more. Best wishes and your continued recovery and journey.
Thank you for sharing. I have FND & it’s turned me & my family’s lives upside down
Thank you, it's nice to not feel so alone and helpless in this.
Jamie! I'm also suffering with FND and thank you for sharing your story.. Now I hope I'll also be back to me
Just wanted to add my thanks for a great video. I've had FND for two years and I agree with everything in your video. After pushing myself hard I managed to go skiing a month ago.
Nick Hossack amazing good job! It is so important we keep pushing ourselves and don’t roll over and play dead. Enjoy the slopes x
I just found your video. I was only recently diagnosed, with the wrong term for the disorder, from the third neuro I went to, who made it very clear he would not help me any further than getting a diagnosis. Your story gives me hope that there is a light at the end of the tunnel, because all I've seen so far is a lot of dark. Thank you for posting this, and sharing what you've been through. I know I'm a total stranger on the internet, but I'm proud of you for all the hard work you put in to get better!
Thank you so much for sharing this. I have been diagnosed with fnd this week after 4 years of seeing multiple specialists and being discharged and told what it wasn't. I was able bodied and lived an active life. Now I have difficulty breathing every few minutes, can't walk over 10 feet and almost fall asleep whilst standing plus more symptoms. I decline every 2weeks and proper treatment as yet hasn't started and could be a 2year wait or longer. I feel I may not make it but seeing your video has helped me so much today. Love and hugs to you I'm really grateful 🙏
Thank you for sharing your story! I’m so glad you had supportive people who believed you and believed in you, and you didn’t give up. Our FND symptoms are similar although I had to figure out all the distraction techniques myself. I’m glad you had a good physiotherapist and diagnosis early on even though it must have been so difficult.
It was so beautiful seeing your dancing again at the end.
आप सभी को सादर वंदन, चरणस्पर्स, यथायोग्य प्रणाम स्विकार हो........
जय माता दी | जय श्री कृष्णा | जय श्री राम |
🚩🚩🚩🚩🚩🚩🚩🚩
*मिलिएगा तीसरे विश्व युद्ध से पहले.......
*70 साल में मेरे देस की गरीबी क्यो नही मीटी ????????
*दाऊद को बडा बनाने वाले कहा है अभी???????? क्या भाजपा और कांग्रेस बराबर हैं???????? मोदी नही करता सकता तो कोई नहीं कर सकता!!!!!!!!
I m bechlor till this moment. I m B. Com. I m 55yrs old. I m jobless now.
dear sir,
आदरणीय सीरी,
u r welcome in India / ahmedabad
........................Great u r... ...... .
Hamare deski garibi V. Bhrstachar kb mitega???????
******* हिं दी व अंग्रेज़ी ा *******
******* English and Hindi *******
Jsk.
Aap muje SMS k sathme miscol de skte ho.
Jsk.
Bharat mata ki Jay......
क्रुपया,
आप मुझे एसएमएस / मेसेज व साथ में मीसकोल करें ा
एक्सीडेंट की वजह से मैं फोन पर बातचीत नही करता.........
कृपया,
सिर्फ संदेश ही भेजीयेगा |
9116741809 अहमदाबाद, गुजरात,
7802967777 गांधी आस्रम, भारत |
9408077029 हिंदुस्थान | हिंदुस्तान |
7435055837(((((India. Gujrat.)))))
धन्यवाद |
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जय श्री कृष्णा
अगला प्रधान मंत्री कौन????????
आप के सहयोग से मैं बन सकता हूँ......
जसक
🚩🚩🚩🚩🚩🚩🚩🚩
I just was diagnosed with FND last week. I've had some trouble accepting this. This video has helped me a lot. Thank you so much. I can't tell you how much I appreciate hearing your story and how much hope its given me.
Hi Jenna Paul
Thank you for your lovely message. I wish you all the best with your recovery.
Happy new year 🥳
Thank you so much for this video. 😭😭😭😭😭
My boyfriend has suffered with FND for six years and never got a diagnosis until this year. He is still not getting proper care here in the States in Augusta, GA.
He has racked up so much medical debt and is where he was six years ago.
I'm begging God for support like what you have received, for medical staff who truly care and are actually helping, and I am so incredibly happy for you.
Thank you so much, again, for sharing this, and may God bless you so much.
I’ve developed functional tics and have dealt with them for 2 years now. I’ve dealt with functional speech symptoms since 2013. Between struggling to even speak a syllable for hours at a time to giving myself whiplash via tics has brought me to your story as I struggle for answers and treatment. When a therapist at the VA told me I won’t ever be cured, I lost hope and shut down. Really feeling it again lately with the struggles of nursing school. Your story gives me hope to keep trying ❤
Thank you for sharing, I have very recently been diagnosed with FND, this is after 5 years of self managing and being told my periodic symptoms were stress related. My recent episodes started last July which was then diagnosed as Stroke, it was not until i had repeated episodes, 7 in five months that an A&E consultant mentioned FND to which I was a bit confused by, and thought she was very quick to judge, because all my symptoms were stroke related or TIAs (mini strokes), I am now grateful to her 'quick judgement' as this is exactly what it is. I am making full recovery, although every day is a new day and new challenges, however, I function normally, although my speech becomes a bit slurred as i tire easily, and my balance still goes now and again, but atl east I am aware of this and I am not living my life thinking I am having mini strokes. So although I am feeling better and going about my life as good as i can, and getting back to work slowly, and this will continue slowly and not the 24/7 job i used to do, I have time for me and take much better care of me now than i ever did. So there is hope and keeping focused on that is what kept me and still keeps me going.
I was told it bluntly,given the information sheet.No one explains whether I get better. Thank you very much for your encouragement.I'm on the way of recovery. 😊🙏
I was diagnosed with FND in August 2022, after I collapsed at work in april 2022 and couldn't feel my body. I am still waiting for doctors. Is hard, I am not able to stand more than couple of minutes (not able to cook without breakes), dragging my legs after myself, shaking, constant panic attacks... I am very happy for your recovery.
Thank you for this positive and encouraging account of FND. I've been battling it for about 8 months now and it's been a terrifying experience which has taken my mind to some very dark places. Your account of this condition lifts my spirits and gives me hope for the future whereas up to this point I've alternated between deepest depression/despair and a grim determination to just somehow survive until I can't take any more. Once again many thanks and good luck on your journey through life.
I have two years of them telling me I'm healthy... I've also had them try to say it was in my head until I started falling. I'm still on my journey to learn what's going on... I'm hoping to figure out what it is soon.
Well, recently got FND as my diagnosis. Only took almost 5 years.
@@hermesgeko 18 years for my diagnosis.
I was a teacher at a dance college and this happened to my most promising student after her graduation. It was horrible but she's doing a little bit better know.
Your video is inspiring, thank you!
I myself have been diagnosed with FND and have also lost the ability to use my legs, also shake and have incredible episodes of pain.
Have now started my rehabilitation and your storey has not just given me hope but confidence in the ability to return some sort of normalcy.
I will update you with my progress in a little while
mocco2228 wishing you all the best in rehab x
I’m 18 years old and got diagnosed with FND yesterday. I am pretty much wheelchair bound and cannot do a lot of things for myself such as personal care, cooking, walking etc. But this has given me hope. I was diagnosed with rheumatoid arthritis and fibromyalgia at age 16 after suffering and undergoing tests since the age of 9. And in 2017 was also diagnosed with IIH (idiopathic intercranial hypertension) as well as being treated for lupus. It’s good to see that there is hope that things will get easier and I hope you continue to get stronger each day. Thank you for sharing your story. It means a lot.
I am also undergoing tests for MS and Parkinson’s disease as well. It’s good to know I’m not alone.
Have you any amalgam fillings? Have you ever considered it may be mercury poisoning or metal toxicity ?
Thank you for your video! I also have FND. I am a teacher and in 2015 when I was training there was a traumatic incident and, once I had dealt with it, I went to the staff room and collapsed, I couldn't move my legs and arms for hours and could only speak in grunts. I thought it was a one off incident and all the tests came back that I was healthy. However it started to happen more after about 6 months. After an exhausting school trip, the episode was quite powerful and I had no speech. I got worse and worse over the course of 6 months and was bed bound. My body was very weak but my head was light - I wasnt able to think so much so I felt little stress. It took 18 months for a diagnosis and once I was diagnosed, I started to get better! I had support from St George's hospital in London from a lovely Psychoneurologist from 2017-2019.
7 years on, I'm not cured but I know my triggers (hunger, exhaustion, overwhelm) and I know how to distract myself to stop one coming on. I dont always have the strength to do it, however.
I have learnt so much from the experience. It has been devastating, a huge weight on my family and my career at times but I feel that I have become more appreciative because of it. Everything has it's dark and its light 💚
Thanks so much for sharing. My daughter was diagnosed with FND last year. She's 21 and its been a very difficult journey but the physio is definitely helping.
Blessings of healing to all those diagnosed with FND and any other illnesses.❤❤❤❤
I was a professional dancer and got diagnosed in 2011-2012. They told me it was psychological and conversion disorder which baffled me. I have had months and years of no symptoms and then they come back. I had no symptoms for 2 years and now they came back. You’re lucky you just kept getting better. Mine keeps coming and going.
Thank you for this, My family has been effected by this illness this week and your video has helped me see a light at the end of tunnel.
Same here , Shammon
After going everywhere since 2007 and becoming exhausted without a correct diagnosis, I'll try a FND specialist! Thank you for this , may God bless you!
Watching this just brought me to happy tears for you! I can now be more determined to face my own challenges with FND - mine is absolutely less severe than your experience. Your video will helps 100s if not 1000s of people and hope it reaches more people like myself. I hope by now you are still recovering and doing those cart-wheels over and over! So inspiring to watch you brave through this tremendous challenge. The sad part is that until you start walking, talking or going out - no one sees your issue but thinks you are drunk because I walk so awkwardly. I never give up hope and work with both a physical therapist and vision therapy. Thank you so much Jamie - you are brave soul and you have given me hope! 😍
This must have been so scary. Well done for not giving up. I have no doubt that this video will inspire many, many others. Truly admirable, thank you for sharing this. From one FND patient to another
Thank you so much for this video! It gave me so much hope that i needed right now. Was diagnosed a month ago after a year of trying to walk again. My walk is very very similar to yours. But your video makes me feel like 'Yes, I can heal from this' . Thank you, thank you, thank you ❤❤❤
Thanks so much for this video !!! I have had FND for almost 6 years and now finally hoping to get rehab and get back to who I was before. I was a very active person doing all kinds of sports and now stuck in a wheelchair but ur video gives me hope to one day I could be able to walk!!! U are amazing !!!
Thank you for posting this video, I was diagnosed last week, I don't feel so alone anymore.
Sitting here crying at this. I've wanted something to show my family that helps sum up my life and there you were with this. I had my first fnd attack 2 years ago, started with back pain and within 14 hours had lost sensation in my right side and my bladder. I was on a Zimmer for 9 months. I lost full use of my bladder, couldn't sleep and couldn't walk unaided. It's now been 2 years and I'm finally down to 1 crutch but sadly developed non epileptic seizures 5 months ago. I watched this and it reminded me of how far I've come in 18 months to actually be walking even if it is one crutch, I retrained my hand to move and grip using mirrors , you've given me so many tips on things I want to try, in a world where fnd is barely spoken about. So glad you got to a place where you're happy. Much love ❤️
Sounds like you’ve come a long way. It’s such a tough condition to live with but we must celebrate the wins. Keep fighting, you got this!
Thank you so much for posting this video and sharing your story Jamie ♥️ you are so incredibly strong and I’m so grateful to have come across your video. it’s given me so much hope this year. I was diagnosed with FND at the beginning of the year having struggled with symptoms for many years. Seeing and hearing your story is the closest I’ve seen to the same symptoms and what I’ve been experiencing, I’m currently rehabilitating with neuro physio each week. Thank you for having the courage to share it’s made me feel like I’m not alone. Sending so much love to you ~ Francesca ♥️
Struggling with this right now unfortunately. Looking forward to recovering and getting back to "me" again. Happy you had a great support system and are doing well now.
I was just diagnosed with FND yesterday.
After being tested for MS over and over again, I get to have all the symptoms, but a diagnosis of crazy lady syndrome.
My family thinks I'm faking, and has all along. 😢
I’m so sorry!
I just went to the ER once presenting with neurological symptoms. Because they couldn’t find anything wrong with the brain scans they automatically labeled me as having FND. I will not be able to work like this, this label is going to ruin my career. Makes me sick how lazy some Doctors can be.
Your family needs help. ....thinking such a thing. How WEIRD
Wow !! The ONLY reason I’m watching this is because today April 2020 is World FND month and a friend of mine posted on IG about her experience with FND which I really knew nothing about. I’m so amazed at your sudden deterioration but incredible progress. The brain is so amazing, but the human spirit is even more amazing. Thank God you made it through, this was quiet a testimony. Thanks for sharing.
I was recently diagnosed with FND, thank you for sharing your story xx
Thanks Jamie, It's videos like your that give me hope to get back to a some sort of normal life and do the things I love doing. Only diagnosed a couple of months ago I have been struggling with the lack of information about FND. I also have a great physio, Krystle, who has been a godsend to me and restoring my beliefs that I will get better. Hard not to get FRUSTATED at times, the simple things that I used to take for granted have turned into hard or impossible tasks. Thanks again and take care, Shane
It is incredibly hard being super able and strong and losing capacities that made you who you are. I am glad you've recovered so much. I still suffer vertigo, facial palsy, and fatigue from a trigeminal infection and it is hard.
Hope you're feeling better. ❤
@@renitentleaf Thank you, I am feeling a lot better.
So very good. The determination to aid your improvement was evidenced by your determination to dance. I would very much like to know what medication you are taking. I have been prescribed baclofen and then Dantrium, both of which I didn’t get on with and currently I am prescribed tizanidine
Thank you! Struggling with my symptoms today but feeling so much more positive after watching your video.
Im so glad you got improvement. 💜 Do you know if it can progress again?
I have just been diagnosed with FND. I found your video was very inspiring, thank you.
thank you for this, i have been paralyzed from the waist down since february and dealing with learning to walk again since! your story is so modivating and makes me feel less alone though it all! thank you
I've had FND for four years. I was not diagnosed by a doctor, but found out myself from the internet. I've beaten my seizures, controlled my ticks, learned to walk and talk again by myself with no help from medical professionals. But I feel my progress has flat lined in the last two years, nonetheless I keep trying to improve. Some help from professionals would be a godsend, but I don't know if or when it will be treated here.
Amazing you’ve got so far on your own. I still have things I am constantly working on too. I do hope you get help one day but if you’ve already come this far, I’m sure you will keep improving
sam autio Hi. How did you get rid of tics. Find slowed breathing or distraction can reduce or stop them but then they often flare up again. Sometimes as soon as you look away from the distraction.
For The tics un fnd maybe if you go to The very cause...you get It...and thats dissociation. internal family sistem and parts work may help
Could be you have full por partial did.
Trauma therapists trained in body work s uch as somatic experiencing could work and help, not only The fnd, but The underline cause and very damaging problem for The whole persona
@@sa.m3070 disassociation and trauma have been ruled out by mental health professionals. In my case the cause of my FND is a mystery. But I have since found employment, getting back to work has certainly helped.
@@shl945 focusing on my breathing certainly helped. But it was a lot of work, like all day every day, stopping tics that will inevitably happen. I also focused on other things, anything I could, such as listening to my footsteps as I walked, the sun or wind on my skin etc.
Thank you so much for this video! My 11 year old daughter was just diagnosed with FND :(( she’s mostly okay during the day, but at night, her tremor episodes get really bad. Uncontrollable kicking and flinging of arms. It’s so scary for us, so I know it’s terrifying for her.
This video was so inspiring!!!
Any tips for helping her get through these episodes quickly? We’ve found that drawing, being on her iPad, and counting backwards from 100 sometimes help, but we’ll take any help we can get!
I run a PNEE clinic here in the US. It is actually the highlight of my career in many ways. Thank you so much for sharing your story, what a brave and strong soul you are. ❤
Thank you so much for sharing your story Jamie. I have recently been diagnosed with FND and I there are days where I feel lost. It's like my Drs have wished me luck and sent me on my merry way without any support. Watching your story and how positive and strong you are is so inspiring and has filled me with hope. Sending you much love.
I have FND you’re a true inspiration thank you for showing us at your worst it gives us hope xxx
Thank you for sharing your message of hope!
Thank you for this. I got diagnosed last week and my head is a whirlwind x
I’ve had episodes for 15 years now. I was diagnosed with FND in 2019. bounced back and forth between neurology and therapy a few times now. Neurologist says one thing, therapist says a different thing. It’s maddening.
Thank you for making this video and showing a clear example of what FND journey looks like and that there is hope.
But you refused to give up! God is using you to save lives. Im not sure if you believe or not but through your experience the way your helping others by sharing your story is priceless! God Bless you & thank you!
OceanArk7 7 oh you christians everything is about God
This was inspirational for me. I was recently diagnosed with FND. You and I have the same gait disturbance. So I feel a kindred connection to you. Thank you for sharing your amazing story. I now have hope.
I just found this video. I was diagnosed after balance issues and tremors on one side. Thanks for this, it was so hopeful!! I hope you are still doing well!!
Thank you for sharing your story. I have been diagnosed with FND. I had a neck injury and things started from there. Sometimes I can’t move properly, I shake and it’s been very overwhelming. Your video was very helpful. 👍
Is very hard to see this video for me. I'm so glad you are recovered. Congratulations and thank you for sharing. My wife is diagnosed with FND and she can't walk, write, dress herself and talk properly (and many more things) for 2 years at this moment. I hope we can make it. We will continue fighting.
Thank you for sharing this video . .My other half was diagnosed with this condition years ago . She walks very similar too your self. She had to give up her job as a nurse sadly .Her tremors effect her lower part of her body more use to be very active. She underwent several major knee surgery and it was decided she has FND they said it was caused from the surgery saying her body had gone into some sort of shock to her system. She was found to have has Ehlers danlos syndrome wasnt diagnosed until in early 20's .she also has dystonia and complex regional pain syndrome to name a few syndromes. Glad your doing so well at the end of your video Big hugs
Ted Clarke I wish your wife all the best in her recovery x
@@jamielacelle9420 Thank you 💜
I've just been formally diagnosed after living with it for years. Your video though frightening was very inspirational. Thankyou for raising awareness x
This happened to me a few years ago in my early 50s. Seeing your video made me cry. I still have problems with stairs and throwing my head back and shaking fits but they are much better with Clonazepan even though I felt very drugged up at times. I got used to the meds but I wish I had seen your video sooner as I was terrified and appalled by what was happening to me and became reclusive. Like you my dogs get me walking even if it is me slowing two pugs down. Our niece has just been diagnosed too with similar and I am going to share this with her as no one Is really talking to her about it even though I want to. A big thank you for posting this. Love GerryxXx
I was diagnosed yesterday with very similar symptoms and your video has really helped me! Thank you so much! I hope you are well today and still going from strength to strength!
Thank you so much for sharing your story! im in medical school and seeing what this condition presents like is very helpful!! good luck with your continued recovery💝
Thanks for giving me hope I was diagnosed yesterday for FND some people a taught am faking , because all my mri says negative, meanwhile I can’t move my right arm and leg I have to drag it which is affecting me both home and work , I can’t do anything am glad you gave me hope that I will be able to walk again
Thank you for sharing your journey with FND. We live it daily and you give hope.
I have just recently been diagnosed with FND along with Benign Fasciculation Cramp Syndrome and Spasmodic Dysphonia. I have had horrible bouts of seizure like activity with CONSTANT muscle spasms/contractions. They’re excruciatingly painful! The neurologist had me on an anticonvulsant called Lamotrigine that caused the symptoms to even become Worse! This whole thing has been an absolute nightmare!! I went in yesterday to get Botox injections, hoping it would help the muscles to release in my head, neck & shoulders, but the neurologist opted to not do them. She figured the risks outweighed the benefits. I’m grateful for this video & seeing your journey to healing. Gives me Strength to push forward to mine.
Thank you for sharing ,i was iagnosed last year after 12 years ,firstly i was told its all in my head ,even my dr said dont phone an abulance your wasting there money ,just go too bed and sleep it of ,what the hell this is real not pretend ..i couln't walk or talk for 6 months .but i continued to fight through ,now im stil very weak still have attacks but im able to walk short distances ,i do fall alot ,still having seziures going in now for an EEG with video recording ,i had topay private to get my results after 12 years ...Good luck for your future ..
I wish you all the best in your recovery. Sorry the doctors didn’t believe you, there needs to be so much more education in the medical field x
thank you for sharing your experience. I have recently been diagnosed with FND and your video has been one of the most helpful and hopeful things I've found about the condition. I've shared it with family and friends so they can better understand what I'm experiencing and it's been really good for my teenage daughters, who have been anxious about my health for the past few years when doctors were telling me there was nothing wrong with me. You're a star
Amazed at your hard work and progress. Congratulations on your results, your strength is an inspiration. Health is wealth... wishing you the best above all else!
Kxs505 S thank you so much x
Thank u! I just got diagnosed after being in hospital 9 days. This is very inspiring!! Thank u for showing the way of letting me know it’s possible and not gonna make it impossible
Congrats on making so much improvement through hard work, so glad you got a wonderful physio
I was just diagnosed last night and I am so scared ,hopeless I had a resident tell me it was all in my head but after doing research I learned she was the uneducated one any advise
Melissa Ladid there are lots of people uneducated about FND, this is something we need to change. Surround yourself with people who love you, and believe in you, but most importantly believe in yourself. I wish you all the best x
Jamie Lacelle thank you so much I needed this today more than. You wil ever know
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Thank you. I had my second COVID shot on March 3 and nothing has been the same since. Diagnosed a couple weeks ago, I just started rehab.
Hi Shar, how is your condition now? I have a similar case after covid vaccination
@@abya2104 I am much better. I was prescribed Gabapentin 3/24 started at 300mg a day and it was a turning point for me. At first I got better very slowly and then it seemed all at once. I feel like now I am pretty much back to normal. I'm still taking 600mg Gabapentin a day not wanting to take the chance of coming off of it quite yet.
Would you consider a heavy metal detox?
Thank you for sharing so many to tell about FND much appreciated 🙏🏼
I have just been diagnosed, with FND. It started with left side of my mouth drooping causing spasms and body weakness and bad speech. Thank you for sharing this.
Thanks to Mike Shipman for bringing this to my attention. What an amazing spirit you have. I am a Healthcare Provider in New York State and have never heard of this, even with a strong background in Neuro. I am always looking to learn so I can best help my patients. Best Wishes to you and your continued fight. You are a very special person. Hugs to your wife for her undying support and love for you. So important.
3 weeks ago I had a fall. Tremors started in my foot and every day they got worse until they stool my whole body like seizures. I was hospitalized and tested as well as put in physical rehab for people with strokes. It has been 3 weeks and every day they still grow worse in small ways. I can’t walk without a walker and the more tired I get the worse my tremors get. My whole body will seize up like a rock and I can’t move it. It also clenches my throat and chest so I can’t breath. Right now we are struggling to get help. The doctors all say they can’t do anything to help me and are only willing to give me referrals to the phycologist. In the past 3 days stuttering my words have developed and have been getting worse as an example of a more recent evolution. It’s really really scary. Thank you for sharing your story. I hope that treatment becomes more available for FND.
Thank you so much for this video, I was diagnosed two weeks ago with FND and have been looking for someone else's story, it's so lovely looking at these comments to know I'm not alone.
There’s so many of us! And loads of people that are fighting to make it easier for us too x
Jamie you are amazing. I have this illness and I have such admiration for you xx
I was just diagnosed with FND yesterday and I had the seizure like walks. Mine wasn't as bad as yours, but this video made me feel like I'm not alone. I just want to say thank you.
Max Games I wish you all the best in your recovery. There is a charity called FND Hope, they have a Facebook group that can be helpful to get information and ask questions. All the best x
@@jamielacelle9420 Thank you for this information.
I'm all in tears watching your video. Well done girl. I'm trying to self diagnose and don't know where to start. In my country there is not much what doctors can do.
Thank you so much for this, Jamie - I have FND, and I found it so frightening until I saw videos like Miranda's and yours and realised that there were people just like me who had made such incredible progress. xxx
Hi Lucy, that’s very kind of you to say. Miranda was a huge role model for me when I was diagnosed. I wish you all the best in your recovery xxx
I cried when I watched this video. It especially resonated with me, because I used to dance. Thank you for sharing your story.
That's a truly remarkable story, put tears in my eyes. Well done for getting through!!
We just found my mom has FND and your video it's helping us too understand better thank you for sharing your story 🙏