FND Functional Neurological Disorder | BBC News | Leanne Fraser | Tom Plender | FND Action

Leanne Fraser & Tom Plender (FND Action Chair) interviewed about Functional Neurological Disorder (FND) Source: BBC News
Useful links:
www.fndaction.org.uk/
neurosymptoms.org/en/
fndportal.org/the-landing-pad/

[@lesakingsbury1612]

Thank you so very much for sharing your story, I am in my early 50’s and was finally diagnosed with FND 2 years after a few years of many doctors, specialists etc not knowing what was wrong with me. After 2 strokes and still not getting better I found a wonderful new GP and she believed there was something neurological that was affecting me and not just the strokes, she referred me to just an amazing neurologist and she listened to me, watched my walk and speech, tremors, a few tests later to rule out somethings and she diagnosed me with FND, which I had never heard of. After years of doctor’s reports, specialists, occupational therapist I am now on the NDIS government program (in Australia 🇦🇺). The sad thing is every time I need help with therapies , treatments etc, even though I am approved and my condition is listed on my file, it is a battle to still get any help. That’s why stories/ TV reports, spreading information and knowledge about FND is so important. Sending love, prayers and strength to you 🙏🏻🫶🏻🙏🏻🫶🏻

[@mind-spalotusbloem6787]

Hey everyone. First thank you for this post. I am so sorry for you Leanne. Please do not give up! There are a few things you can try, even without treatment. They are safe and easy to try. I hope it will help you or the other readers here. I had the first symptomes when I was 10. All of a sudden I could not walk and there was a weird weakness in my legs. After 2 months everything was fine and I could walk again. Now it is back and it did bring some friends like tremors, worse eye sight etc. I do not think it will go away, even after the expertise treatment I had in the Netherlands. But I did learn a few tricks to make life better. What helps me when I have tremors is teasing my brains. I use a massagegun but you can use anything realy. As soon as your brain change focus, the tremors will calm down. Without that massagegun you could try spelling words backwards or counting from 100 to 1 with laps of 7 (so 100 - 93 etc.) There are also a few easy tricks to calm the nerve system fast. They are all over youtube. Oh and dont forget, you will have good and bad days. Everyone has them, even the healthiest people. Be kind to yourself when it is one of those days. Big hugs, good luck and take care. I hope you all feel at least a lot better soon.

[@gemlife1329]

Thank you for sharing your story. I have had FND since 2017 ❤

[@lisasmith1332]

Thank you from someone who has this! Hoping for more awareness!

[@anadjuric5360]

Thank for sharing your experience. I have FND over two years. I have problem in medical environment to understand me. Some medical workers think that I can stop this by proper breathing and imagination of correct motion. I have very often dissociation which is the most uncomfortable condition.

[@jakef6205]

She is so incredibly brave ❤

[@annienicholson3953]

Thank you for highlighting. Recently diagnosed after being ambulanced to hospital with suspected stroke. Spent 15 days being thoroughly checked out and daily physio. Unfortunately since being discharged home 15 days ago to community support I have received no help at all. Unable to work or drive and just getting round on crutches downstairs. Thank good ness for great friends and neighbours looking out for me, looking after my pony and my dog trainer who is caring for my dog.

[@TrachieYiYi]

3 yrs of fnd with no treatment I recovered some but alot I still can't do

[@johnwack6201]

My wife was diagnosed with FND it’s so bad when she has seizures and she can’t walk for long it’s soul destroying seeing her like this but just like you she won’t give up and we hope that the medical professionals will get too know this disability because not many do

[@lizzie88972]

Thank you for this post. Leanne is so young, I'm so sorry for that and my heart goes out to her and her family. I was finally diagnosed with FND last year, but it took 10 years. I was in my 40s, when mine strangely started in the fingers of my left hand and gradually ended up affecting my left side. After being told I had ideopathic left hemidystonia, it got worse, so I was told I may have Parkinson's, MS or CBS. After 10 years of my symptoms, I too can no longer work and I am house bound, my husband is my carer. I'm now in my 50s. FND needs to be bought into awareness and NHS funding needs to be given. In the past I've faced bullying from a Manager who didn't believe my symptoms, as they varied everyday and she said "it was because I was just getting old and the menopause", she actually laughed at my symptoms, when I couldn't talk or swallow properly, but her bullying was my word against hers, so I couldn't do anything. My symptoms are not plateauing, but slowly worsening as I get older. Everyone's FND is different, some will recover and others won't. You just have to try to live with it in the best way possible. Neurophysio has helped a bit and mindfulness, but has not cured it. FND needs to be more recognised in the medical profession, NHS, DWP/PIP and by the public instead of the prejudice faced by many FND sufferers from these sources. One thing that I find annoying is that a lot of websites say most people recover! NO, NOT most people, as this video proved. Websites please stop saying this as it's not true! Only some recover, not most people! It varies! To generalise like this is cruel.

[@Tom-jb9op]

I have fybromyalgia cfs elemes fnd do you have muscle pain I have heds to do you

[@lizzie88972]

@@Tom-jb9op Bless you Tom, I get fatigue and muscle spasms and twitches. I hope you get relief from your symptoms. Thank you for your reply.

[@aussiepaganthefam6545]

My 9 year old daughter has it and so hard to find professionals that will help.

[@sumk66]

Listen to ruqya

[@amferns1554]

Thank you for your sharing, hang in there there is hope, I am in my 70 , I t is a pity you are so young , you will get better with youth on your side

[@sallyjones8683]

Just diagnosed with fnd after 18 years. I dont hqve seizures but i do have paralysis and migraines and chronic pain and memory loss and things like no spatial awaremess

[@lilhorse66]

I have FND. I take propranolol for tremors

[@ArgentoFan]

I've had it since 2017. You get very little help. I have speech problems, seizures plus various other problems related to it.

[@sarahdawson7985]

I feel like FND is a diagnosis that neurology comes to when they can’t find anything else and they send us away to look at websites and wait years for any treatment or support at all. I know that FND has a diagnostic check list that neurologists should use to positively recognise sysmproms and diagnosis is then made after other things are also ruled out, but in my experience it’s been a case of ‘og you have trauma in your history and a lot of stress, it’s FND’. Rather than ‘let’s do the right tests for other neuro conditions presenting this way to make sure before we go with FND’ and it’s left me scared and wondering if they’ve got it right for me?

[@sarahdawson7985]

Sorry for spellings thumbs shaking on phone keypad 👍🏻