My Functional Neurological Disorder (FND) Recovery Story

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  • čas přidán 14. 05. 2018
  • I would like to share my story to spread awareness about Functional Neurological Disorder and to show people that have FND that there is hope. Unfortunately there isn't enough awareness to give everyone the best availability for treatment and diagnosis. They say this is one of the most common neurological disorders and yet most people have not heard of it. We need to change this!
    I would like to send my love and well wishes to everyone with FND, you are stronger than you think and you are not alone. Jamie x
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Komentáře • 392

  • @M7BVV-Phil
    @M7BVV-Phil Před 4 lety +51

    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.

  • @umayusu
    @umayusu Před 3 lety +76

    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!

    • @lynnware9202
      @lynnware9202 Před 2 lety +13

      Thank you for making FND your thesis. There is a great need for educating others and research. Best wishes on your completion!

    • @aicy5020
      @aicy5020 Před 2 lety +1

      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.

    • @BLFulle
      @BLFulle Před rokem +4

      Please, what ever you do, don't tell people it's in their head or not really sick.

    • @renitentleaf
      @renitentleaf Před 11 měsíci +2

      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..

  • @SandieRoberts
    @SandieRoberts Před 4 lety +34

    “It’s not impossible...it’s very hard” - now HARD I can do!! 💗

  • @bagathplays27
    @bagathplays27 Před 10 měsíci +4

    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

  • @elizabethhoward8728
    @elizabethhoward8728 Před 2 lety +42

    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❤️❤️❤️

    • @shereads1903
      @shereads1903 Před rokem

      ❤️❤️❤️

    • @BenQotsa
      @BenQotsa Před rokem

      Hi Elizabeth, were you on any ssri medication at the time?

    • @gethsoldsmith
      @gethsoldsmith Před rokem

      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

    • @BenQotsa
      @BenQotsa Před rokem

      @@gethsoldsmith did you take anti depressants

    • @gethsoldsmith
      @gethsoldsmith Před rokem

      @@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.

  • @torioriorio1998
    @torioriorio1998 Před 3 lety +34

    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!!!

  • @bordenfleetwood5773
    @bordenfleetwood5773 Před 4 lety +29

    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.

    • @elliet9404
      @elliet9404 Před rokem +1

      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.

  • @syrengirl88
    @syrengirl88 Před 11 měsíci +5

    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. 😢

    • @melinda3314
      @melinda3314 Před 5 měsíci +1

      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.

    • @brizak70
      @brizak70 Před 3 měsíci

      Your family needs help. ....thinking such a thing. How WEIRD

  • @rebeccacooper9121
    @rebeccacooper9121 Před rokem +5

    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! ❤

  • @aloggins69
    @aloggins69 Před rokem +5

    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.

  • @amethiejuniper8066
    @amethiejuniper8066 Před 4 lety +10

    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.☺️

    • @jamielacelle9420
      @jamielacelle9420  Před 4 lety +1

      Sorry to hear you have FND. I wish you all the best in your recovery. Don’t give up x

    • @madoak5597
      @madoak5597 Před 2 lety

      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

  • @creepykels
    @creepykels Před 5 lety +9

    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!

  • @Owlberightback
    @Owlberightback Před rokem +3

    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 ❤

  • @mandiloubell
    @mandiloubell Před 6 lety +22

    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

  • @Matthaios93
    @Matthaios93 Před 4 lety +9

    Thank you, it's nice to not feel so alone and helpless in this.

  • @agnieszkamuszynska6734

    Thank you so much for sharing your amazing recovery story, I am so happy to see that you have made such an amazing progress

  • @andrewmorley1901
    @andrewmorley1901 Před 6 lety +1

    A beautiful and moving film Jamie. You've done so well and are so inspirational. Sending you my best wishes.
    Great that you've got incredible support from Candice, your Mom and the lovely, amazing O's!

  • @acousticintervention7163
    @acousticintervention7163 Před 4 lety +15

    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!

    • @jamielacelle9420
      @jamielacelle9420  Před 4 lety

      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

    • @stuartburns8657
      @stuartburns8657 Před 3 měsíci

      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?

  • @awakenyoursenses4667
    @awakenyoursenses4667 Před 2 lety +2

    I had my 2nd mod shot and within hours had FND full body in Australia 🇦🇺 I don't know where to start the hospital are not reporting to the vaccine authorities I had to... thank you for hope .. I just don't understand why this government is do cruel and not helping me when a diagnosis is made ... my main concern is the people around me watching in hopelessness ...

  • @downtown82
    @downtown82 Před 4 lety +10

    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.

  • @alwaysinspire
    @alwaysinspire Před 2 lety +2

    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 ♥️

  • @arcanadawn
    @arcanadawn Před rokem +1

    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!

  • @koru5
    @koru5 Před 2 lety

    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.

  • @hepziisaac9780
    @hepziisaac9780 Před 5 lety +9

    Jamie! I'm also suffering with FND and thank you for sharing your story.. Now I hope I'll also be back to me

  • @kerrihruza2980
    @kerrihruza2980 Před 5 lety +7

    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.

  • @michaelmcwilliams2815
    @michaelmcwilliams2815 Před 5 lety +9

    Thank you for sharing. I have FND & it’s turned me & my family’s lives upside down

  • @yamabushi170
    @yamabushi170 Před rokem +1

    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.

  • @millymay0025
    @millymay0025 Před rokem

    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!

  • @carissamatkovic8083
    @carissamatkovic8083 Před 5 lety +1

    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

  • @ginkgotreehealth
    @ginkgotreehealth Před 9 dny

    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.

  • @xanecol7632
    @xanecol7632 Před 5 lety +2

    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 !!!

  • @jdshank
    @jdshank Před 4 lety +4

    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.

  • @dansmith4345
    @dansmith4345 Před 4 lety

    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

  • @Lehanii
    @Lehanii Před rokem

    That's a truly remarkable story, put tears in my eyes. Well done for getting through!!

  • @lolli1000
    @lolli1000 Před 3 lety +1

    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.

  • @Ducky54545
    @Ducky54545 Před 5 lety +2

    Congrats on making so much improvement through hard work, so glad you got a wonderful physio

  • @charlibird6686
    @charlibird6686 Před 2 lety +1

    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 💚

  • @Chibbit1000
    @Chibbit1000 Před rokem +1

    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

  • @jackyeastwood9294
    @jackyeastwood9294 Před 6 lety +2

    Jamie you are amazing. I have this illness and I have such admiration for you xx

  • @cascurry1008
    @cascurry1008 Před 4 lety +3

    I was recently diagnosed with FND, thank you for sharing your story xx

  • @mages6881
    @mages6881 Před 6 měsíci

    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💝

  • @nickthane
    @nickthane Před 5 lety +9

    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.

    • @jamielacelle9420
      @jamielacelle9420  Před 5 lety

      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

  • @francespark629
    @francespark629 Před 5 lety +2

    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.

  • @mariakathreenbarrientos4889

    I also was diagnosed with FND since 2014. It's tough but yes, all of us can get through this. Thanks for spreading courage and hope for all of us with a similar experience as yours. :)

  • @bishopdanceproductions7309

    Hi Miss Jamie!
    It’s Laura Bishop .... I just saw a link to your video posted on Facebook. You are strong and such an inspiration. I’m sending lots of love to you 💜🌺❌⭕️

  • @wildcat102
    @wildcat102 Před rokem

    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 🙏

  • @carriejardin6820
    @carriejardin6820 Před 8 měsíci

    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! 😍

  • @en1i1gma
    @en1i1gma Před 2 lety

    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.

  • @anemoononfire333
    @anemoononfire333 Před 5 lety +1

    I also have FND and this really gave me so much hope
    thank you for sharing this story!

  • @teslaandhumanity7383
    @teslaandhumanity7383 Před 5 lety +3

    I have FND you’re a true inspiration thank you for showing us at your worst it gives us hope xxx

  • @lucybrown9304
    @lucybrown9304 Před 5 lety +6

    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.

    • @lucybrown9304
      @lucybrown9304 Před 5 lety

      I am also undergoing tests for MS and Parkinson’s disease as well. It’s good to know I’m not alone.

    • @deborahatkinson2277
      @deborahatkinson2277 Před 2 lety

      Have you any amalgam fillings? Have you ever considered it may be mercury poisoning or metal toxicity ?

  • @AlissaBlackMuddyMastiffs

    Thank you so much for sharing hope with me! ❤️ I’ve been diagnosed. And I’m grateful to find hope.

  • @VirginiaHartwick
    @VirginiaHartwick Před 4 měsíci

    Thank you for sharing so many to tell about FND much appreciated 🙏🏼

  • @Lentilboots
    @Lentilboots Před 5 lety +9

    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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      @mrugeshaary1888 Před 4 lety

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  • @shanewinks1908
    @shanewinks1908 Před 3 měsíci

    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

  • @mavkuhn
    @mavkuhn Před 2 lety

    Thank you, Incredible Lady. I appreciate the hope you’ve given me!

  • @TheFever77
    @TheFever77 Před 4 lety +2

    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.

  • @kxs505s4
    @kxs505s4 Před 4 lety +1

    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!

  • @lynnware9202
    @lynnware9202 Před 2 lety

    Thank you for sharing your journey with FND. We live it daily and you give hope.

  • @gerrydahl9369
    @gerrydahl9369 Před rokem

    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

  • @nreidbr
    @nreidbr Před měsícem

    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.❤❤❤❤

  • @jennwellings9913
    @jennwellings9913 Před 5 měsíci

    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! 💕💕💕

  • @Jenny-pi2ri
    @Jenny-pi2ri Před rokem

    it's so touched and I cried, thank Lisa and thank you, how great both of you are 🥲

  • @BellaMckenna..
    @BellaMckenna.. Před rokem

    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

  • @jayne1165
    @jayne1165 Před 6 lety +3

    Thank you for sharing your story, for giving hope.

  • @tkube222
    @tkube222 Před 4 lety +1

    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.

  • @mimigaudin1978
    @mimigaudin1978 Před 2 lety +1

    Thank you for posting this video, I was diagnosed last week, I don't feel so alone anymore.

  • @miguelfornell8674
    @miguelfornell8674 Před rokem

    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.

  • @mocco2228
    @mocco2228 Před 4 lety +2

    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

  • @hermesgeko
    @hermesgeko Před 4 lety +14

    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.

    • @hermesgeko
      @hermesgeko Před 2 lety

      Well, recently got FND as my diagnosis. Only took almost 5 years.

    • @AB-ku4my
      @AB-ku4my Před rokem

      @@hermesgeko 18 years for my diagnosis.

  • @jennapaul1701
    @jennapaul1701 Před 4 lety +1

    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.

    • @jamielacelle9420
      @jamielacelle9420  Před 4 lety +1

      Hi Jenna Paul
      Thank you for your lovely message. I wish you all the best with your recovery.
      Happy new year 🥳

  • @user-ju8uk1vs8d
    @user-ju8uk1vs8d Před 5 měsíci

    Thank you! Struggling with my symptoms today but feeling so much more positive after watching your video.

  • @eugenemakes
    @eugenemakes Před 5 lety +3

    Thank you so much for sharing your story 🙏🏻

  • @avrilmitchellgriffiths7307

    Diagnosed today. Thank you so much for sharing your journey x

  • @mikeycjdean707
    @mikeycjdean707 Před 3 lety

    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. 👍

  • @lucyquinnell3204
    @lucyquinnell3204 Před 4 lety

    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

    • @jamielacelle9420
      @jamielacelle9420  Před 4 lety +1

      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

  • @jenniferarroyo5990
    @jenniferarroyo5990 Před 3 lety

    Thank you for posting this video. I was recently diagnosed . Your inspiring!

  • @brunogupa3313
    @brunogupa3313 Před 5 lety

    You are wonderful!!! A very encourage story!! Thanks for sharing.

  • @josephgallagher1278
    @josephgallagher1278 Před 2 měsíci

    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

  • @frontierfrenchie2615
    @frontierfrenchie2615 Před rokem

    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.

  • @aoifewalsh5867
    @aoifewalsh5867 Před 3 lety

    My sister has just been diagnosed with FND, I found this very helpful. Thank you💕🙏

  • @user-cl5pw9qz4n
    @user-cl5pw9qz4n Před 10 měsíci

    I have just been diagnosed with FND. I found your video was very inspiring, thank you.

  • @meganscott5985
    @meganscott5985 Před 3 lety

    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.

    • @jamielacelle9420
      @jamielacelle9420  Před 3 lety

      There’s so many of us! And loads of people that are fighting to make it easier for us too x

  • @MegaMusical10
    @MegaMusical10 Před rokem

    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!

  • @starhope2082
    @starhope2082 Před rokem +1

    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. 😊🙏

  • @YM-hr3re
    @YM-hr3re Před 10 měsíci

    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.

  • @korikokrafts
    @korikokrafts Před rokem

    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 ❤️

    • @jamielacelle9420
      @jamielacelle9420  Před rokem

      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!

  • @NishaSharma-me3ew
    @NishaSharma-me3ew Před 2 lety

    Thanks for such videos which not only educate people but also inspires and give hope to them

  • @samautio6065
    @samautio6065 Před 4 lety +5

    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.

    • @jamielacelle9420
      @jamielacelle9420  Před 4 lety +1

      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

    • @shl945
      @shl945 Před 4 lety

      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.

    • @sa.m3070
      @sa.m3070 Před rokem

      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

    • @samautio6065
      @samautio6065 Před rokem

      @@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.

    • @samautio6065
      @samautio6065 Před rokem

      @@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.

  • @canadiangirrrrl
    @canadiangirrrrl Před 11 měsíci

    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!!

  • @bridgetmildon6573
    @bridgetmildon6573 Před 6 lety +9

    Thank you for sharing your message of hope!

    • @Mrs_Shep_Unplugged
      @Mrs_Shep_Unplugged Před 5 lety

      Thank you for this. I got diagnosed last week and my head is a whirlwind x

  • @crystalepley6319
    @crystalepley6319 Před 4 měsíci

    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. ❤

  • @rachelharbison2436
    @rachelharbison2436 Před 4 lety

    Going through rehab for my FND diagnosis right now and my PT sent this video to me. Thank you for your encouraging words and for sharing your story!

    • @jamielacelle9420
      @jamielacelle9420  Před 4 lety +1

      Rachel Harbison thank you! I wish you all the best in your recovery x

  • @shammon1
    @shammon1 Před 3 lety +3

    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.

  • @davidnorth8646
    @davidnorth8646 Před 6 měsíci

    Thank for this I’ve been Diagnosed today with FND it has answered so many questions originally diagnosed with TIA
    But seeing amazing dr at queens sq hospital all fall into place

  • @cherylhancockbrown8178

    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.

  • @cynthialewis2096
    @cynthialewis2096 Před 3 lety

    Wow!! Amazing strength and courage!

  • @jacintan2006
    @jacintan2006 Před rokem

    Thank you so much for this. This is an incredible help to me to understand xxx thank you beyond measure for sharing. Xx

  • @nickernockers20
    @nickernockers20 Před 3 lety

    I also have FND, it is great to see your strength grow you have done amazingly well, i am also going to have intensive physio soon, i hope i can come out as strong as you are 😁

  • @reneesinnott6083
    @reneesinnott6083 Před 5 lety +2

    Thank you so much for doing this video xo