@@lindasmith8771 I’ve heard that theory and the doctors agreed with how I refuted that theory. With my experience.

@@ruperthitchcox4657 Communication is the key so try researching centres of excellence where patients have shown great improvement in a short space of time and then understand that it is possible for symptoms to lessen, leave and never return. If medics tell a patient FND is a lifelong condition then it is likely that it will be. Have hope that recovery is possible.

Also, do you have a really stiff neck on one side and, do you get headaches? I have lots of different things going on with my vertebraes of my spine: bulging disks,wedging of vertebrae at least 8 of them, osteo arthritis. I have been put on Cymbalta as chronic pain management as, I could not sleep due to pain. I have two young children who need a lot of support, so for years I have been trying to be as healthy as possible.

I've had every symptom you listed there at some point. I went through a phase of collapsing alot , it was caused by stress at work.

@ruperthitchcox4657 my Husband says he has noticed my symptoms are worse when I am tired and stressed. I currently have a lot going on between medical stuff, studying, learning to drive and then looking after my children. I am their carer and they see a lot of therapists. My two neurologists have said I have to make sure I see my psychologist as it will help. This past week I have been feeling unwell but, I can't quite put my finger on what it is. The two days I have felt the worst my head and eyes have been going a lot. My teeth move on their own 24/7 and, in 2018 I was told by the dentist to get a mouth guard for sleeping as apparently I grind my teeth. I have never noticed it neither has my husband, I think my teeth has been chattering in my sleep really softly that we have not noticed. I have a birth defect on my C1 vertebrae which was found last October when I fell. I have spent many years having xrays,ct scans and mris and that was only found last October. If you say you have had the same symptoms, then I think it probably is FND that I have. They are trying to see if It could be parkensons as, my Dad had it but, I know it's not always to say because A family member had something, you will definitely have it. Every person with every condition has it differently. My head and eyes were all over the place when I went to the shops yesterday, I had a lot of people staring but, I tried my best to pretend that everything was normal. It got worse on the bus as I was starting to feel quite self conscious about it. But I tried to just breathe and stay calm. It got a bit better at home. A few weeks ago my children were asking me to stop making "weird" faces and I told them that my body is doing it on it's own and I can't help it. After a few hours they got used to it and they did not say anything. My children just cuddled me and said they love me. It made me feel a bit better.

No I have not.

Why meow 🐱

@@kylebrady3651 I don't know but it worked

Just diagnosed after so many years being a mystery... Hope you have been managing ok

Just recently got diagnosed after 1 year and a bit. It definitely seems like a stigmatised condition… because it can appear so different and it can change so suddenly people don’t really understand and think we are faking.

That sounds familiar .Except it started in left hand .1 cat 😊 Hope you feel better .

It depends on how you manage it, with my FND, it started while riding home from work, I had a seizure while at the traffic lights, which shocked me, within a few weeks I was bedridden unable to walk without collapsing. it was only after 6 months of this that I had a physio come to visit and slowly she got me moving again. but I certainly plateaued and my condition is greatly affected by the cold making it a lot worse. But I have heard of people who are polar opposite and have a worse time in the heat.

Hope things gave improved somewhat for you Emma

Totally understand & many people don't get it. Stay strong and take each day as it comes (I know that's easier said than done)

@johnmcbride1773 i am here if you wanna speak

I got diagnosed and would like to hear from others who have it

@@correttathomas3204 me :)

@@stellaancimer8505 thank you for your sensitive response. We become very isolated I think. The psychological aspect of fnd is so frustrating and I get really annoyed and down with getting family and friends to understand what our condition is like. Its not anyone's fault, but no symptoms are regimental and consistent. They are very supportive and caring, but it changes every single day. So it's an important thing for us all to try and work things out as best as we can, because this is the only reference point to work from. Thanks

Tony, this is very true you don’t know what’s going to happen next, but over time and some determination, you learn your triggers, and how to cope, I still have a lot of what you mentioned, but you will begin to cope and move forward. You’ll be ok, just don’t give in and stay in bed. Keep moving!

Pretty, I had a company called physio comes to you. They were brilliant, Hannah is the one gave me the drive and inspiration to keep moving. She told me, even if only make it to the kitchen she gave me heaps of exercises, which have helped. 9 years on I still have issues, but I am more mobile, but not to the point I could keep my job. Just to set expectations. I hope that helps.

Hi Kim, I can work but on a limited basis. I’ve since setup a business and trying to get that started but, I do have to manage things accordingly. Yes stress really effects me too. My symptoms do get worse, also when I push myself, that can be cause a flare up.

I have FND, stress is makes it worst

I was not told just found out, from discharge letter from neurologist community care. As they were refusing to have me! Said they have to deal with my back spine first then they will. Consider me 😢

I’m pleased what I said has. Please feel free to ask me any questions.

You are not alone, it took me ages, it was 8 years before I was diagnosed with FND. Just know you are not alone.

@@ruperthitchcox4657 I learnt more from media world than NHS very little support iv seen more about it on here

Mine is very unpredictable too, but over time you notice triggers, mine is getting cold, especially going from hot to cold, like at the moment, going outside, and so forth, over time you find ways to cope, but getting in a wheelchair is the worst thing you can do, as I talk about, you have to just keep moving, power to you!

I found being given a diagnosis really helped as now I know what I was dealing with and could research it accordingly.

@@ruperthitchcox4657 how do I reply to u

Just learning you tube world

@@mrssuzybuck2070 should be able to just hit the reply as Im doing.

Hi Sunny, sorry for the late reply. I just walk as much as I can. I do some gym work when I can but it always wipes me out and I'm only talking 10 minutes on the bike will trigger seizures if I am not careful.

@@ruperthitchcox4657 aah thats so interesting to know! I personally manage my FND with the gym - i do fast past walking on the treadmill, incline walking and light jogging and I also go on the bikes. but i had to work up to that point.. everybody's brain is different. I feel like when I tell people I'm in the gym constantly to manage FND it just baffles them.. sometimes I start to even play tricks on myself in my own mind and wonder if im just "making it all up", even after 4 years of severe symptoms like 3 hour long seizures and paralysis (thanks, stigma!). i found your video very very validating for the way I manage my FND. from the bottom of my heart, thank you for making this. I've tried to make a video like this before but just found it way too challenging. so thank you for sharing. i understand how hard it was to probably make this. FND is genuinely traumatic, in the beginning. but I feel like people are resilient and we find our ways to cope, survive and then thrive xx

@@KittyGotClaws Hi Kitty, Im really pleased it has helped you. Ive got a heap more planned. I know what you mean about the seizures, I had a 7 hour one 10 days ago which landed me in hospital. I have heaps of videos planned on pain and my wiggly toes, they go round in circles! I just for some reason, keep hitting barriers that have stopped me over the past few months. But knowing the video’s help, means a huge amount to me and a reason to continue. Thank you xx

@@ruperthitchcox4657 omg that sounds horrific, longest I had was 6 hours. Hope you are recovered now from that episode and able to keep moving forwards!!

@@KittyGotClaws fine thanks now, my worst was 36 hours I was totally exhausted, the only way they could stop me seizing was giving me sedatives! But yes pushing forward is the only way. On a side note.The Foo Fighters song Walk, that initially made me have that determination to get moving after being bed ridden for nearly a year in 2013. Been my anthem since. My F.N.D developed after having my neck broken in an assault, so that song holds a lot of resonance.

You are so welcome! Im going to be posting more video's I have more planned.