My Functional Neurological Disorder (FND) Recovery Story

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  • เผยแพร่เมื่อ 14 พ.ค. 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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ความคิดเห็น • 394

  • @umayusu
    @umayusu 4 ปีที่แล้ว +77

    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 2 ปีที่แล้ว +14

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

    • @aicy5020
      @aicy5020 2 ปีที่แล้ว +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 ปีที่แล้ว +5

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

    • @renitentleaf
      @renitentleaf ปีที่แล้ว +3

      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..

  • @bagathplays27
    @bagathplays27 11 หลายเดือนก่อน +6

    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

  • @M7BVV-Phil
    @M7BVV-Phil 4 ปีที่แล้ว +52

    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.

  • @SandieRoberts
    @SandieRoberts 5 ปีที่แล้ว +36

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

  • @elizabethhoward8728
    @elizabethhoward8728 2 ปีที่แล้ว +43

    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 ปีที่แล้ว +1

      ❤️❤️❤️

    • @BenQotsa
      @BenQotsa ปีที่แล้ว

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

    • @gethsoldsmith
      @gethsoldsmith ปีที่แล้ว

      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 ปีที่แล้ว

      @@gethsoldsmith did you take anti depressants

    • @gethsoldsmith
      @gethsoldsmith ปีที่แล้ว

      @@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 3 ปีที่แล้ว +36

    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!!!

  • @syrengirl88
    @syrengirl88 ปีที่แล้ว +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 6 หลายเดือนก่อน +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 4 หลายเดือนก่อน

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

  • @bordenfleetwood5773
    @bordenfleetwood5773 4 ปีที่แล้ว +30

    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 ปีที่แล้ว +2

      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.

  • @aloggins69
    @aloggins69 ปีที่แล้ว +6

    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.

    • @TowaBeer
      @TowaBeer 11 หลายเดือนก่อน +1

      me too!!

  • @rebeccacooper9121
    @rebeccacooper9121 ปีที่แล้ว +6

    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! ❤

  • @amethiejuniper8066
    @amethiejuniper8066 4 ปีที่แล้ว +11

    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  4 ปีที่แล้ว +1

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

    • @madoak5597
      @madoak5597 2 ปีที่แล้ว

      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

  • @ginkgotreehealth
    @ginkgotreehealth หลายเดือนก่อน

    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.

  • @mandiloubell
    @mandiloubell 6 ปีที่แล้ว +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

    • @jamielacelle9420
      @jamielacelle9420  6 ปีที่แล้ว +1

      mandiloubell all the best in your recovery. Stay strong!

    • @Call.Me.Ligaya
      @Call.Me.Ligaya 4 ปีที่แล้ว

      May i know what were your medications were?

  • @acousticintervention7163
    @acousticintervention7163 4 ปีที่แล้ว +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  4 ปีที่แล้ว

      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 4 หลายเดือนก่อน

      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 2 ปีที่แล้ว +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 ...

  • @hermesgeko
    @hermesgeko 4 ปีที่แล้ว +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 2 ปีที่แล้ว

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

    • @AB-ku4my
      @AB-ku4my ปีที่แล้ว

      @@hermesgeko 18 years for my diagnosis.

  • @creepykels
    @creepykels 5 ปีที่แล้ว +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!

    • @jamielacelle9420
      @jamielacelle9420  5 ปีที่แล้ว

      I wish you all the best in your road to recovery x

  • @downtown82
    @downtown82 5 ปีที่แล้ว +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.

  • @Owlberightback
    @Owlberightback ปีที่แล้ว +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 ❤

  • @michaelmcwilliams2815
    @michaelmcwilliams2815 5 ปีที่แล้ว +9

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

  • @Matthaios93
    @Matthaios93 4 ปีที่แล้ว +9

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

  • @samautio6065
    @samautio6065 5 ปีที่แล้ว +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  5 ปีที่แล้ว +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 4 ปีที่แล้ว

      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 ปีที่แล้ว

      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 ปีที่แล้ว

      @@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 ปีที่แล้ว

      @@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.

  • @nickthane
    @nickthane 5 ปีที่แล้ว +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  5 ปีที่แล้ว

      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

  • @jdshank
    @jdshank 4 ปีที่แล้ว +5

    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.

  • @charlibird6686
    @charlibird6686 2 ปีที่แล้ว +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 💚

  • @hepziisaac9780
    @hepziisaac9780 5 ปีที่แล้ว +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

  • @amzb1714
    @amzb1714 2 หลายเดือนก่อน

    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.

  • @armaghanghiai
    @armaghanghiai 10 หลายเดือนก่อน

    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.

  • @jennwellings9913
    @jennwellings9913 5 หลายเดือนก่อน

    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! 💕💕💕

  • @josephgallagher1278
    @josephgallagher1278 3 หลายเดือนก่อน

    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

  • @oceanark77
    @oceanark77 5 ปีที่แล้ว +4

    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!

    • @sixfeetunder0105
      @sixfeetunder0105 5 ปีที่แล้ว

      OceanArk7 7 oh you christians everything is about God

  • @nreidbr
    @nreidbr 2 หลายเดือนก่อน

    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.❤❤❤❤

  • @YM-hr3re
    @YM-hr3re 11 หลายเดือนก่อน

    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.

  • @starhope2082
    @starhope2082 ปีที่แล้ว +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. 😊🙏

  • @crystalepley6319
    @crystalepley6319 4 หลายเดือนก่อน

    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. ❤

  • @adventureswithshimoji
    @adventureswithshimoji ปีที่แล้ว

    I’m crying. I just got diagnosed with FND 3 weeks ago and I’m hopeless. A lot of it is walking difficulties. Like my legs stutter step. Or they’ll crisscross and with no balance. The first time yesterday, I blacked out a bit while walking to the car. My shaking is a massive problem. I do have a hereditary shake in my hands, but this is obviously way worse and it’s my whole body. Me head will jerk up and down. The world spins sometimes and I throw up and have to medicate myself to sleep because it’s so, honestly, painful. I can’t hold a cigarette, typing is hard, minute movements are impossible. I can’t take a picture with my phone. I’m sorry for
    How long this post is but I’m really hopeless right now and have no idea to fix this in in my apple up tall edges isn’t sure either and we’re desperately searching for something when it gets really bad I should go to the hospital but then the doctors just say I’m having a panic attack so the hospital is no help

  • @teslaandhumanity7383
    @teslaandhumanity7383 5 ปีที่แล้ว +3

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

  • @cascurry1008
    @cascurry1008 4 ปีที่แล้ว +3

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

  • @alwaysinspire
    @alwaysinspire 3 ปีที่แล้ว +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 ♥️

  • @kerrihruza2980
    @kerrihruza2980 5 ปีที่แล้ว +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.

  • @andrewmorley1901
    @andrewmorley1901 6 ปีที่แล้ว +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!

  • @agnieszkamuszynska6734
    @agnieszkamuszynska6734 3 ปีที่แล้ว

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

  • @AlissaBlackMuddyMastiffs
    @AlissaBlackMuddyMastiffs 3 ปีที่แล้ว

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

  • @Lehanii
    @Lehanii ปีที่แล้ว

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

  • @carissamatkovic8083
    @carissamatkovic8083 5 ปีที่แล้ว +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

  • @mariakathreenbarrientos4889
    @mariakathreenbarrientos4889 5 ปีที่แล้ว

    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. :)

  • @MegaMusical10
    @MegaMusical10 ปีที่แล้ว

    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!

  • @xanecol7632
    @xanecol7632 5 ปีที่แล้ว +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 !!!

  • @arcanadawn
    @arcanadawn ปีที่แล้ว +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!

  • @cherylhancockbrown8178
    @cherylhancockbrown8178 2 ปีที่แล้ว

    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.

  • @koru5
    @koru5 2 ปีที่แล้ว

    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.

  • @horsedog0911
    @horsedog0911 5 ปีที่แล้ว

    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.

  • @millymay0025
    @millymay0025 ปีที่แล้ว

    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!

  • @melissaladid7882
    @melissaladid7882 5 ปีที่แล้ว +14

    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

    • @jamielacelle9420
      @jamielacelle9420  5 ปีที่แล้ว +3

      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

    • @melissaladid7882
      @melissaladid7882 5 ปีที่แล้ว +1

      Jamie Lacelle thank you so much I needed this today more than. You wil ever know

    • @Jat1111
      @Jat1111 4 ปีที่แล้ว

      th-cam.com/video/mCCyJPQKPiM/w-d-xo.html

  • @yamabushi170
    @yamabushi170 ปีที่แล้ว +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.

  • @sjacobs246
    @sjacobs246 3 ปีที่แล้ว +2

    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.

    • @abya2104
      @abya2104 3 ปีที่แล้ว

      Hi Shar, how is your condition now? I have a similar case after covid vaccination

    • @sjacobs246
      @sjacobs246 3 ปีที่แล้ว

      @@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.

    • @deborahatkinson2277
      @deborahatkinson2277 2 ปีที่แล้ว

      Would you consider a heavy metal detox?

  • @Chibbit1000
    @Chibbit1000 ปีที่แล้ว +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

  • @Jenny-pi2ri
    @Jenny-pi2ri ปีที่แล้ว

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

  • @lolli1000
    @lolli1000 3 ปีที่แล้ว +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.

  • @anemoononfire333
    @anemoononfire333 5 ปีที่แล้ว +1

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

  • @jackyeastwood9294
    @jackyeastwood9294 6 ปีที่แล้ว +2

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

  • @arianaandreea6397
    @arianaandreea6397 ปีที่แล้ว

    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.

  • @francespark629
    @francespark629 5 ปีที่แล้ว +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.

  • @dansmith4345
    @dansmith4345 4 ปีที่แล้ว

    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

  • @mimigaudin1978
    @mimigaudin1978 3 ปีที่แล้ว +1

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

  • @gerrydahl9369
    @gerrydahl9369 ปีที่แล้ว

    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

  • @bishopdanceproductions7309
    @bishopdanceproductions7309 6 ปีที่แล้ว +1

    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 💜🌺❌⭕️

  • @lucybrown9304
    @lucybrown9304 5 ปีที่แล้ว +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 5 ปีที่แล้ว

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

    • @deborahatkinson2277
      @deborahatkinson2277 2 ปีที่แล้ว

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

  • @jayne1165
    @jayne1165 6 ปีที่แล้ว +3

    Thank you for sharing your story, for giving hope.

  • @Lentilboots
    @Lentilboots 5 ปีที่แล้ว +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.

    • @mrugeshaary1888
      @mrugeshaary1888 4 ปีที่แล้ว

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      *मिलिएगा तीसरे विश्व युद्ध से पहले.......
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      *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
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      ******* 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.........
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      आप के सहयोग से मैं बन सकता हूँ......
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      🚩🚩🚩🚩🚩🚩🚩🚩

  • @TheFever77
    @TheFever77 4 ปีที่แล้ว +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.

  • @Ducky54545
    @Ducky54545 5 ปีที่แล้ว +2

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

  • @mages6881
    @mages6881 6 หลายเดือนก่อน

    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💝

  • @carriejardin6820
    @carriejardin6820 9 หลายเดือนก่อน

    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! 😍

  • @mavkuhn
    @mavkuhn 2 ปีที่แล้ว

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

  • @shammon1
    @shammon1 4 ปีที่แล้ว +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.

  • @mikeycjdean707
    @mikeycjdean707 3 ปีที่แล้ว

    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. 👍

  • @VirginiaHartwick
    @VirginiaHartwick 5 หลายเดือนก่อน

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

  • @bridgetmildon6573
    @bridgetmildon6573 6 ปีที่แล้ว +9

    Thank you for sharing your message of hope!

    • @Mrs_Shep_Unplugged
      @Mrs_Shep_Unplugged 5 ปีที่แล้ว

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

  • @wildcat102
    @wildcat102 ปีที่แล้ว

    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 🙏

  • @davidnorth8646
    @davidnorth8646 7 หลายเดือนก่อน

    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

  • @jaredprocopio2840
    @jaredprocopio2840 6 หลายเดือนก่อน

    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!

  • @miguelfornell8674
    @miguelfornell8674 ปีที่แล้ว

    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.

  • @kxs505s4
    @kxs505s4 5 ปีที่แล้ว +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 2 ปีที่แล้ว

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

  • @avrilmitchellgriffiths7307
    @avrilmitchellgriffiths7307 2 ปีที่แล้ว

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

  • @BellaMckenna..
    @BellaMckenna.. ปีที่แล้ว

    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

  • @en1i1gma
    @en1i1gma 2 ปีที่แล้ว

    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.

  • @korikokrafts
    @korikokrafts ปีที่แล้ว

    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  ปีที่แล้ว

      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!

  • @brunogupa3313
    @brunogupa3313 5 ปีที่แล้ว

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

  • @tkube222
    @tkube222 4 ปีที่แล้ว +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.

  • @alanafield8766
    @alanafield8766 2 ปีที่แล้ว +1

    I was diagnosed 2016 after a hemiplegic migraine stopped both legs working. After 6¹/² years I had a major fall and back to both legs paralysed. Not coping great atm as just our of hospital and took me 7 months just to stand last time. Such a long recovery with FND and just when you think life's back to normal you relapse. Not sure the nervous system can ever really be cured. 😢

  • @shanewinks1908
    @shanewinks1908 4 หลายเดือนก่อน

    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

  • @andrewdavis5043
    @andrewdavis5043 3 ปีที่แล้ว +1

    My wife was diagnosed yesterday with fnd. She has seizure like symptoms then they could go and then come back weeks later. She loses all feeling in the left side of her body which could come back after a day. This is very frustrating but having the diagnosis of fnd and watching all these recovery stories should help and ease hers and mine concerns

  • @aoifewalsh5867
    @aoifewalsh5867 3 ปีที่แล้ว

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

  • @eugenemakes
    @eugenemakes 5 ปีที่แล้ว +3

    Thank you so much for sharing your story 🙏🏻

  • @mocco2228
    @mocco2228 4 ปีที่แล้ว +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

    • @jamielacelle9420
      @jamielacelle9420  4 ปีที่แล้ว

      mocco2228 wishing you all the best in rehab x

  • @user-ju8uk1vs8d
    @user-ju8uk1vs8d 6 หลายเดือนก่อน

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

  • @meganscott5985
    @meganscott5985 4 ปีที่แล้ว

    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  3 ปีที่แล้ว

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

  • @jennapaul1701
    @jennapaul1701 4 ปีที่แล้ว +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  4 ปีที่แล้ว +1

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