Campaigners demand new treatment plan for Functional Neurological Disorder
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- čas přidán 20. 08. 2024
- Doctors, scientists and campaigners are heading to parliament in the coming week to raise awareness about Functional Neurological Disorder (FND).
After a migraine, the condition is the most common reason people consult a neurologist but patients say they are frequently dismissed by doctors.
Tom Plender struggled for years to get a diagnosis because of the lack of knowledge by healthcare professionals.
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Omgodness I have been waiting for this to be on the new as I worked for the NHS for over 9 years and now cannot work at all. It has destroyed my life!
The neurologist I saw diagnosed me within 8 minutes. I'm 35 and have it mild compared to this man and it's in my head and neck; it's noticeable and embarrassing, but it's not as severe as this case. However, the neurologist I saw has not only discharged me, promising help in the future when it comes available near me, but he's basically put it down as a psychosomatic issues, which I certainly don't believe it is. I have neuropathy in my face, which has been going on for nearly 13 years, also tmj, etc. And approximately 4 years ago, this tremor started in my head and neck.
Exactly, I was disappointed and disgusted when I was summoned for a physchiatric assessment when they had exhausted all of their Avenue of diagnosis. I had my assessment as was discharged with a sound mind 5 plus years ago, but a dysfunctional Syndrome. Well fast forward years of neurological issues, fear of going for help and admitted in hospital for 7 days last month finally with a more correct diagnosis of FND. I am fuming at the delay and distress this has caused me and my family.
Wow i am a few days in hospital with Ct scan, MRI, ECG, EEG and a few days for a co sultant to diagnose me today. I thought i had terets or parkinson or something
Same happend with me, sent me away in 5 minutes and I waited to see her for more than 6 months. Got prescribed Gabapentin to deal with the pain, now after 4 years 7i might see a specialist.
I actually think FND is overdiagnosed in the Neurology setting. I think where patients have complex symptomatology, often FND is the go-to diagnosis because it is easier than looking scientifically and logically at the situation. Just because a patient has symptoms that spread over multiple body systems doesn't automatically mean that they have a neuropsychiatric problem, that is a flaw in reasoning known as a slippery slope. There are of course situations where patients do have neuropsychiatric symptoms, and I think there needs to be a much clearer diagnostic route rather than using FND as an unhelpful label and as an excuse not to provide any treatment or logical and scientific investigations.
What is the successful treatment? We saw this specialist but there was nothing to be offered but antidepressants at the time, a few years ago. Really curious what helped him recover.
Hi I had a combination of neuro physio movement re training, some CBT and also occupational therapy, it was a mutli disciplinary approach given over several months as an inpatient at The National Hospital for Neurology in London UK which is an NHS hospital. i don't have PTSD so trauma therapy was not necessary to my recovery.
I was diagnosed with f n d about 6 months ago but as yet I have had no treatment my gp is very unsympathetic he hasn’t got a clue how I feel I’m now more or less housebound tbh I’m feeling quite suicidal
Fantastic interview! Great to see FND, such a devastating illness, getting some coverage. Recent research using FMRI brain imaging is now showing it is a brain network disorder.
I was having a seizure/stroke. The hospital tried to tell me it was FND.
I know they misdiagnosed me.
All my life I have been ‘vaguely fit’ 😳😊. Could never run a marathon or swim far or polish our boat without feeling I’d been weight lifting, BUT … I jumped out of planes, I ski’d, I often did the London-Brighton bike ride ‘55’ miles, I sailed … regularly 100 mile passages. 15th of March ‘23 I was out doing my normal 20 minute mile walk … sometimes just one mile, sometimes four. 17th I felt a tenderness in my left calf, same 18th,19th but no big deal. On the 20th I got out of bed, walked four paces … collapsed. Straight down, no pain,no warning. Just dropped vertically. My GP saw me within 90 minutes, saw me fall a further 6 times … I was admitted to hospital where I stayed 10 days. Specialists came … all pronounced me fit … in THEIR discipline. However the 8 physios who saw me (4 teams of 2) quickly took away the walking frame they had given me as I just fell through it. The Dr who discharged me said there was nothing more that they could do … it was suspected FND and he explained about hardware and software … it made sense at the time. Had a home physio for 3 months but there was nothing she could do either. So here I am … virtually housebound. I can most certainly stagger along a pavement but any slope … I just drift down it. Any sudden stop … I just fall straight down. ABSOLUTELY nothing changed in my emotional life between the 15th and 20th. Nor did I hurt myself. Wish that I could,give a message of help to anyone bored enough😟😊 to have read this far but sorry, I can’t. No medical plans for the future. Feeling very lost.
Exactly, I was disappointed and disgusted when I was summoned for a physchiatric assessment when they had exhausted all of their Avenue of diagnosis. I had my assessment as was discharged with a sound mind 5 plus years ago, but a dysfunctional Syndrome. Well fast forward years of neurological issues, fear of going for help and admitted in hospital for 7 days last month finally with a more correct diagnosis of FND. I am fuming at the delay and distress this has caused me and my family.
Not a demand we need it ..not be shamed for something that even professionals can't even answer makes it lonely world we have no voice
i was dignosed with FND june 2022,so its good they are finaloly talkinmg about it
FND is NOT the second largest reason to see a neurologist. Claiming that is a fundamental misreading of the statistics.
I got an FND diagnosis last year, after my MRI scans and lumbar puncture and genetic testing came back clear. Although I did have some "age related changes" in my brain... Hopefully another appointment to see Prof Jon Stone this year to discuss my diagnosis, and what (if any) treatment plan I can have. My Neurophysio said to "just try and walk normally". 😕
Yea, an telll them to just try and walk on their heads too for the day. Just appalling behaviour from so called professionals.
Would have been interesting to hear what treatment he had?
Hi I had a combination of neuro physio movement re training, some CBT and also occupational therapy, it was a mutli disciplinary approach given over several months as an inpatient at The National Hospital for Neurology in London UK which is an NHS hospital.
@@lizzie88972 what about food, i swear it is nutrition deficency, we need to Adress the cause
I live in Maryland. Is there any place that knows how to treat FND? I’m a single mom trying to raise a teen and a six year old. I don’t want them to suffer because of my condition.
I got diagnosed with FND last March (on my birthday actually) sometimes i cannot walk properly,, i have bladder issues and im losing weight at a fast rate.
This condition is unusual and it affects all of my body. I am happy that more information is being released regarding it.
Much love and respect to all that live with this also. 🙏🏻 💜🖤💜
Worth getting checked for lyme disease !
I got diagnosed with this I was an electrician I cannot work now the pain tingling fatigue and numbness from any slight activity is doing my head in i need help and no one is helping no treatment plan has worked.
I have fnd
Hope they find better treatment soon
I was misdiagnosed with this multiple times for actual neurologic problems. I fear a lot of these patients have been misdiagnosed as well. Central processing disorders and drug induced neurologic symptoms are very real and are often mischaracterized as functional neurologic disorders. But so are a number of testable and organic neurologic conditions or autoimmune conditions and infections of the central nervous system. It still is a diagnosis that has very little empirical backing to justify it.
I have FND, diagnosed by a neurologist specializing in movement disorders and treated by a neuropsychiatrist who lead a multi-disciplinary team to help me manage my symptoms, all of this being before the pandemic. Anyone want to take a crack at me about jabs and psychosomatic illness?
The irony of this comment is that the history of FND shows that it is simply a renaming of conversion disorder which is supposed psychosomatic illness.
It was renamed by neurology because they found that patients objected to it less than those other terms, found it less insulting.
@@citizen3000 Your brain's predictive bias is showing! It needs error correction with more recent informational feedback. The reason conversion disorder has been moved away from is that the diagnosis requires investigation and discovery of some psychological or emotional trauma, but for more than 30% who present with symptoms no trauma can be found. I find your lack of awareness while trying to infom us of the error of our understanding - well - disturbing.🙂
Bless his treatment.
I have fnd fits n tics wouldn't wish it on anyone I have back to back fits all night every night not nice😢
Why was there so little info on how he was cured?
Very interesting common interest between neurology and psychology.
What was the successful treatment!!!???
Sounds like the new treatment plan is available.
What is it? And where is it?
What was his treatment like??
After all the years of having Menieres diseases and constant ear ringing , it is nice to sit in a quiet restaurant without anything bothering me. Even the fullness in the bad ear is hardly noticeable. And the constant ear ringing is gone.Took 4weeks ?thanks Dr Liam Ogbebor centre on CZcams for the tinnitus program and herbal ear drop treatment and I hope it stops for everyone else sooner.
I have FND and for the pass 5 months I have been using budandtender CBD oil and I am managing better now
Try b12
@@davidhamilton3000 How is B12 going to help a condition which is supposedly not caused by any damage to the nervous system?
Y'all taking years to get diagnosed? I got diagnosed day one with only one symptom.
What symptom?
The vast majority of peopel with this diagnosis are overweight caucasian women (no offense just stats). Sky must have sought hard to find a male sufferer because they are rare. And this diagnosis doesn't register too much in Germany where healthcare is better and accurate. Seems big in UK.
Why the heck not call this just what it is, psychosomatic?
Because that's not what it is? It's a genuine problem with the brain. I have FND myself
@@OreoLps I'm going to take a walk now.
Because it’s not.
@@ilirllukaci5345 have fun?
@@CornHol1o Do psychosomatic conditions exist?
My 14 year old is in hospital right now and the Dr ‘s as re saying it’s in her head because all the tests are normal. She has not been able to walk in 3 months and it’s just getting worse. If anyone knows anything or anyone please reply as we are scared
So sorry to hear that, I would recommend contacting the charities FND HOPE or FND Action they will be able to provide support and guidance about what to do.
Thanks will contact them today. Fingers crossed 🤞
@@Parr_World Very best of luck!
Did they thoroughly test her for autoimmune diseases of the central nervous system? Did she get covid at any point?
@@okzoomer5728 Started before Covid and FND affects the autoimmune system. And effects her nervous system in her muscle control and her walking gait.