FND Functional Neurological Disorder | BBC News | Leanne Fraser | Tom Plender | FND Action
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- Опубликовано: 26 мар 2024
- 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/
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 🙏🏻🫶🏻🙏🏻🫶🏻
Bless you so much - so much medical gaslighting going on
Sorry so long in replying. In middle of vicious flare up. Gosh its unpredictability is crippling in itself. Can't plan anything. Keep going as best you can👍
@@KCsBabies sorry for tardiness. Not too good atm. You know how it is. My GP says he's had FND patients for years!!! But, you only get to hear of it if you're struck by it or someone close. Very strange
Thank you from someone who has this! Hoping for more awareness!
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
Thank you for sharing your story. I have had FND since 2017 ❤
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.
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.
She is so incredibly brave ❤
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.
I was officially diagnosed in 2022 with FND. There is no treatment centre of any kind for it here in South Africa. No specialised dr's no nothing.
I’m from SA as well and have been researching it but no treatment centre, no therapy, nothing in terms of even support. (Was diagnosed 6 months ago.)
My 9 year old daughter has it and so hard to find professionals that will help.
Listen to ruqya..ruqya dum shariah by qari Abdul basit salfi...@halobye98 I did message but it gets taken down....
@@sumk66 Which ayah may i know coz we recite quran daily and play quran recitation 24/7
@@halobye98 listen to ruqya dum shariah by qari Abdul basit salfi..also read surah fatiah on her 3 qul last 3 ayahs surah bakarah and ayatul kursi on off numbers after fajar and asr if u can or whenever ..also blow on water and make her drink with intention for cure...you can play surah fatiah ruqya too her also...I've been told by drs it's fnd however I went to raqi and it's jinn possession...does she have bad dreams?? Also what are her symptoms..you'll see when Quran plays how she reacts..
@@halobye98 I just messaged and it was taken down
Listen to ruqya...qari Abdul basit shariah dum..also recite fatiah 3 quls yourself too
Since COVID FND seems to be increasing. So many healthy people have suddenly come down with awful rare illnesses (including myself). Every time I bring up COVID to a Dr it is ignored and I can’t help but wonder if there’s a giant cover up going on.
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
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?
Sorry for spellings thumbs shaking on phone keypad 👍🏻
I've had it since 2017. You get very little help. I have speech problems, seizures plus various other problems related to it.
I’m so sorry this has happened to this lady - anyone… they get called ‘malingerers’
Even people waiting to be waiting to be diagnosed with Epilepsy or Lyme Disease, etc… get called ‘malingerers’ until fully diagnosed…
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
3 yrs of fnd with no treatment I recovered some but alot I still can't do
I have FND. I take propranolol for tremors
The more people learn about this rare Neurological disorder as it is called on tv the more people seem to be suffering from it. FND is something one can fully recover from when it is described as a Conversion Disorder and treated by those who understand it to come from the mind's making.
Do you live with FND? Learning about diseases and disorders by any means doesn’t equate to “ooh I’ve got that “. “Me too”.
The neurological community moved away from the term Conversion Disorder. FND is not a choice or manifestation of sadness, madness, depression or will.
The only thing rare about FND is the general population knowing or understanding it actually exists.
You in return seem flippant and ignorant of the life altering negative changes and challenges the disorder brings to people’s lives.
People of all ages from different cultures and backgrounds.
Sometimes it can go into remission but, it’s so varied in the spectrum of mild to severe. Also not enough people who become somehow cured are telling their stories.
To imply this is a choice of the mind is insulting to me and you most likely wouldn’t attempt to discredit other neurological illnesses or would you.
Let’s imagine a computer is broken. Whether it is the hard drive or soft ware issue. They both stop the computer from working. You can replace parts and re program the software. But, computers aren’t people. Illnesses are multi faceted and grey areas hiding infinite combinations.
Why you feel so dismissive about this subject I have no idea.
I was diagnosed with Multiple Sclerosis in the 1980s and was seen by a multitude of neurologists. I have been paraplegic and quadriplegic and then gained some recovery so know what it feels like to be healthy, a total wheelchair user and then one who can struggles to teeter on tiptoes because of contractures of the ankles. I do not have FND but I feel sorry for those who do.
You describe disorders of the mind as if they are not real when indeed they are real and cause symptoms of illness which the patient truly feels. I am not belittling disorders of the mind as you do. Disorders if the mind can be treated with very good outcomes.
Nor do I belittle FND and those who have been diagnosed. From what I read on FND websites patients are in the most lacking caring medics and thus might miss out on appropriate investigations and treatment not only for FND but for new problems which arise. Some medics have greater belief in FND and others believe it should be regarded more as a psychological illness but when a patient consults a medic which type of medic are you seeing? FND replaced Conversion Disorder as a diagnosis because medics believed patients felt demeaned by the thought of mental illness. I believe many medics demean patients by diagnosing FND because they can't be bothered to deal with what they believe is a Conversion Disorder. Investigations and treatment should involve both physical and mental health professionals to ensure the best outcome!
@@nicolagibbons8763I posted a reply which I hope will answer some of your points.
That’s very confusing Linda. Your second post sounds to me like you’re nullifying your first.
You’ve had a terrible time and sympathise with the experiences of multiple health problems.
Sorry I can’t make out how the two posts come from the same person but, I do have FND Bi Polar and Chronic Depression. So my minds not always on the ball
@@lindasmith8771conversion disorder as a term in medicine is no longer used so you don’t need to use it either. After living with FND from the age of 16 (I’m now 20) it’s not something that is curable, not many people fully recover and it’s a dynamic disability that literally changes every day whether it’s by intensity or symptoms.