Its jinn possession listen to ruqya..

Thankyou Tom for speaking up for the FND community! I’m recently diagnosed , My own Dr said to me my symptoms are all in my head. One neurologist said I manifested my symptoms, my Physio therapist said this is actually very serious & my new rehab psychologist took 2 hours to tell me about FND & how real & serious it can get ! Medical professionals need more education for sure, we need to be heard & understood & believed . Much love from Australia 🇦🇺

Thank you for talking about FND I suffered from it since 2019 I met with Dr Mark Edward and his team they are fantastic in st George s hospital in London

Hi Tom, I have FND and really appreciate you doing this interview and your other awareness work. I wish I could get proper treatment, it really is difficult, my neurologist is great but he is overworked and has far too many patients on his list to the degree that I no longer get appointments but instead have to only email him. It’s great tho that he has found a way to keep patients on his list and to keep accepting patients it’s just a shame that he can’t give the level of care he once was. I often get dismissed by drs because of my fnd diagnosis, they won’t help on things that could be completely not fnd related because they put it down to fnd….. then I deteriorate and 2 weeks later go back to find out it’s something else, that’s the kind of discrimination we still face. I do find that frontline workers have become more empathetic over the years but only a little and more needs to be done, as there are still many with the ‘it’s all in your head’ attitude and those ones tend to treat you quite poorly even though that if that was the case you’d still be needing empathy

Hello Tom hope your ok today. I got diagnosed on 8th Nov this year so fairly new to FND. I also have fibromyalgia and chronic fatigue syndrome, balance issues for years. I was diagnosed quite quickly tbh. I agree with you about the parliament knowing and getting things done and lots of awareness. And also the DWP but i did a change of circumstances and still don't get high rate pip. I've severe fibro and chronic fatigue but still can't get passed middle rate care. I look forward to hearing about this meeting. My neurologist said there's NO CURE BUT CAN MANAGE

Hi Tom, Thank you and thanks to GB News for carrying this. Sufferer also, managed to get a diagnosis after about 5 years, One Neurologist told me to "just go home and get on with my life". I refused to leave his office until he referred me onto somebody who could help. Thankfully this was onto a specialist FND service and finally a definitive diagnosis. Keep up the great work!

🥺🙏🏼

There is not enough being done to help sufferers of FND.Sufferers are bei g rushed into hospital in case it's a stroke.But because they put all the symptoms down as FND and they are being sent home from hospital still very ill but because there is nothing the hospital doctors can do they get sent back home.There needs to be more help out there and people should be educated on FND.FND IS REAL.

I live in Tasmania Australia and you would be surprised how many doctors don’t know what FND even stands for. I’m under the care of DR LENH in Queensland who is absolutely amazing. I have suffered from FND for 7 years now following a car accident and it has turned my life upside down. Every day is a challenge and it makes it very frustrating when a doctor looks at you with a blank look on their face.

FND is very unpredictable for sure iv had this since 20.21

Please keep helping us people with this disorder. I'm tired of walking strange when I get just a little nervous. (Here on my boyfriend's phone) Thank you doctors. Please keep learning more.

I have just been diagnosed with f n d after two years and I am in a terrible state I really don’t know what to do it’s frustrating I can’t even sit to eat anymore

Professor Edwards is brilliant. He has some great Q&As on KZbin with FND Hope

I was a fit 68 yr old walking 7000 steps a day when I took my 1st mandated AZ jab in Australia. Within a few weeks I was hospitalized with balance issues and 17 months later have been diagnosed with FND cause being "anxiety". I have never needed help with anxiety issues before. Could it be the jab that caused my FND and not anxiety.

After 17months of seeing various neurologists in Australia I have been given an FND diagnosis. I was a fit and healthy 68 year old and lost my ability to walk soon after my 1st AZ jab - could there be a link - only time will tell I guess.

What ‘successful treatment’? Those of us suffering wish to know!

Excellent interview Tom, I had tremors in my hands and feet for 6 years. My GP thought I was just an anxious young adult. After being diagnosed with FND late last year, I left my dream job in London and move back home. Thank you for raising awareness. I hope our amazing NHS and doctors will be enlightened.

Hi Tom, I was diagnosed with FND late last year. I had tremors in my hands and feet and also bilateral leg weakness for 6 years. My GP thought I was just an anxious young adult, so i was on beta-blockers for 6 years. After being diagnosed, I left my dream job in London and move back home. Next month I have an appointment with a neurology consultant in my city for the first time. I would like to ask for your advice on what questions I should ask to the consultant. To be honest, I am still lost after being diagnose. Thank you very much.

I got fnd fits n tics it sucks

Your neurologist is wrong , can I ask the name of your neurologist and where you are being treated, you may need help from FND action the charity I work for to support you with this

Tom please help - I have had an emergency telephone appointment with my neurologist this week as in addition to severely affecting my legs my FND has now progressed to me beginning to lose the use of my right arm hand, and yet again I have been categorically told there is no treatment for FND apart from rest, pacing and lifestyle changes. I mentioned your case and you campaign and Prof Jon Stone and he told me he attends conferences with Prof Stone and not to believe all the stories I read. I am at a loss. My GP will not refer me outside the area until I have completed a very long treatment programme with a psychologist In my local mental health team which I have been waiting for for over six months, but it is my FND that is affecting my mental health. I explained this at my last mental health check up and they simply said they can't help with FND No healthcare professionals in my area seem to want to help. Please let me know what treatments you received to get your health back. I can't face the rest of my life like this.

Excellent information! Thankyou for your endeavour to get more knowledge and support around FND. Both myself and my dad have been diagnosed in the last 12mths with it, both doctors started that conversation with saying “it’s all in your head” 😔 so unhelpful.

I have suffered numerous head injuries caused by violent parents and a fall downstairs where I smashed my skull of the radiator.I had a huge hematoma on the back of my head but got no treatment. I also had meningitis 3 times in 2007 the cause was infected sinuses.I was also diagnosed with Parry Romberg Syndrome. My problems were suddenly zoning out and going into a trance like state, I also suffered non epileptic seizures chronic fatigue muscle pain and severe cramps in my face hands feet stomach and legs. At times I found walking difficult to coordinate the right side of my body always feels weak. I also have difficulty with my short term memory. Professor Jon Stone of Edinburgh diagnosed me with FND

My FND diagnosis came after i had a berry sized anurysum burst on my brain, now i have constant stabbing pain on my brain, and reoccuring siezures, dizzyness, tingling, fainting

Great to see that there is now a NHS pathway for people with a FND dx but I remain concerned about the misdiagnosis of FND amongst people with rare conditions such as Mal de Debarquement Syndrome, Stiff Person Syndrome and Moyamoya Disease. I am also aware that Prof Jon Stone has talked about the 'dustbin' diagnoses of FND (eg where the dx is made on the basis of normal MRI results, rather than using the 'ruling in' signs/tests) but doesn't seem to have a strategy to prevent this from happening. One lovely woman in the UK was given the FND dx during a 3 minute consultation with a neurologist in a corridor. When she asked him to explain this condition she was told to 'google it' and the shocking thing about that is that I wasn't shocked by it. Meanwhile, there was no patient involvement in the FND Subtypes paper and the 'territorial expansion' commentary from Prof Kanaan (which is now mostly behind a paywall) also gives me cause for concern. I wish I'd known about the Parliamentary event in advance since I could have raised these issues - and others - there. Edited to add that now Conversion Disorder has been lumped under FND in DSM it is even harder to record a misdiagnosis of Conversion Disorder. And to say that a young woman I met at an in person rare conditions meeting was told that if she didn't accept a Conversion Disorder dx her primary care provision would be withdrawn. Thankfully she was able to move to a practice where she continued her diagnostic odyssey until her rare condition was identified but she (along with many other people with rare conditions) experienced medically induced CPTSD (aka 'a sane response to an insane situation') as a result of this threat and the delays it caused before she was accurately diagnosed.

Another one that got FND diagnosis today. I live in Reykjavik Iceland and thankfully we do get fantastic help here. However, when I lived in Milton Keynes up until last year, and my neurologist said I might have FND back in 2020 after having Covid, there was no help, just non whatsoever. Thank you for your fantastic awareness. My family now know what this is due to this video I showed to them. Thank you.

Fantastic to see this, thank you Tom! I was diagnosed with FND 2 months ago, my (post diagnosis) journey is just starting, but I am full of optimism at the opportunities ahead to communicate, position and explain this disorder. Angela asked brilliant questions and Tom, you spoke eloquently, you are a powerfully advocate!

Thankyou for bring some awareness to this condition. As so eobe who has suffered this for the past 20years I wish there was more support in the health industry.

I suffer’d with chronic panic and Anxiety Disorder for 14 yrs and always continued to go to my GP as I always thought their was something going on, but in their minds it was psychological but last yr 2022 I was then diagnosed with FND which I never heard of and after being told to read up on it I related to a lot of the symptoms, but I was told my FND was prob down to the trauma of my constant panic and anxiety but to be honest I don’t know what think anymore. I am totally ground with this and never leave my home, psychology in the past has never help’d and I was told by a Neurologist I would need also a FND specialist that is a Neuro physio but then told sorry there’s none in your area so I was left to just get a physio but it’s had no effect what so ever and Anxiety meds don’t help either. Definitely needs to be more help with FND with the NHS

I had never heard of FND until I was diagnosed with it November last year, really hope they find a treatment soon

having FND is so tough,i keep getting paralysis and issues with my stomach and bladder,only seen a neurologist once,im 16 i sohulndt have to be going through this

It took me 34 years to get a propper diagnosis. I am now on my way to healing! Thank you everyone who raises awareness of this horrible disease. You are so very much appreciated!!

Excellent! Did you have physical symptoms?

This is so interesting I have FND only got told over 2 weeks ago I was in hospital for 4 days three hospital taught I has a mini stroke at first had so many horrible and scary symptoms it is a scary thing ti have they done brain scan was clear they said so I got put on tab just wanna try get better

Thank you so much for fighting. I have had this since 2020 after a migraine. I am still waiting for mental health help and an FND specialist. I was basically told you have FND, no go away. My symptoms are debilitating. If I can help you I will.

So awesome!

I'm not usually a big jazz fan, but I loved this immediately

Awesome.

I’m at US. I got Fnd diagnosed 3 years ago thank for taking about this terrible condition

I also live with FND in America. I have been dismissed by many in the medical community. They say if you have seizures you should go to the hospital. The ER is the last place I would go due to the lack of knowledge of ER Dr.s.

Good interview Tom, If you get another opportunity, I suggest you expand how FND can affect different people, my 54 year old wife woke up one morning and couldn't walk, that was 15 months ago, since then her hands have locked in the fist position, and she's now paralysed below the waist, can't balance or sit up, lost control of her bladder and bowels, can't pick anything up or feed herself, and fears she'll soon be locked-in with no way of communicating, at all stages she's told "It's FND, there's nothing we can do", we're desperate, and there's absolutely nobody looking into this, we're not waiting for any test results, got no appointments, feels like she's just been cast aside.

What a fantastic interview! Thank you. I knew what FND was because I've watched friends struggle with it, but never expected it to hit home as it has this year since my daughter has started struggling with sudden episodes of paralysis and the variations in how people respond to her are astounding. Some are helpful and caring, but so many treat her with disbelief and suspicion, which makes her life doubly challenging. I'm so pleased to see good information being shared.

Thank you for being a voice for this condition, it's being heard. Well done chap 👍

FND is most certainly NOT psychological, and recent findings show it is actually damage , physical damage, in the white matter of the brain. Very similar to MS, but MS is similar damage, but in the Grey Matter. This condition needs much more research, and MUST be taken out of the hands of Psychology, and into the realm of neurology once and for all. Having psychologists as the primary care providers has been proven to be extremely damaging to FND sufferers, many studies internationally have shown this, and most of the interventions made by psychiatrists and psychologists are bordering on extreme negligence and almost criminal. I am an FND sufferer myself, and never bought into the psychological explanation, as the symptoms just are not something made up, that a change of thinking can overcome, and anyone who thinks this need to have their heads read themselves, because they are psychopaths. BTW, quite a common explanation for FND by medical professionals, is a ' software issue, not a hardware issue', which is blatantly false, it is a hardware issue, and if they keep pushing this line, this line that the software ( ie, the way you think, aka psychological) is faulty, then no advancements will be made in trying to figure out this illness. It is extremely debilitating, and although some people may have optimism with physiotherapy, yes, you will have some improvements, and i do believe it plays a part, eventually, the new neural pathways established ( which is what the physical therapy achieves) will eventually become damaged themselves, and it all starts again, there is no cure, just a continual cycle of trying to re-establish new neural pathways, or trying to hang onto the ones we have for as long as we can. I too was a musician, and high achiever, working days managing businesses, spending my nights playing music, rehearsing, performing, writing new material. It appears quite a lot of us were high achievers, hard workers, before being struck down with this horrible affliction.

I live in Austin TX and I was just diagnosed with FND in 12/2023 and FND has turned my life upside down. I have a lot of the symptoms and stay exhausted all the time. My daughter has it too, but she only has seizures. I have everything, but seizures. We need much needed research on this all over the world. Thank you for bringing this to the public.

Thanks from Australia so much for getting the word out and us sufferers some help! So grateful! I've been suffering for 3 years with FND now! Hope we find more support and answers

As an FND sufferer I thank you for all you do to raise awareness of this horrible condition.

Thankyou so much! Actually got very emotional watching this. It means so much to see this disorder getting the awareness it deserves that we deserve 🙏 thankyou

I'm in Pakistan and unfortunately every doctor except one knew about this , no one knows about this they all called it anxiety and put some patient on schzophernic drugs . 😤 Doctors are really ignorant these days.

It's just another word for 'hysteria'. They rename and repackage something to try to sell it to patients.