FND Basics Q and A

This Q and A was a zoom webinar. Questions were received live from participants who joined via the zoom platform.
Who Are We?
FND Hope Mission
Our mission is to promote awareness, support affected individuals, and advance research for the prevention, treatment and recovery of FND.
FND Hope Vision
We envision a world where FND patients can expect to be treated with dignity, care and respect, regardless of the cause of their symptoms.
FND Hope Motto
We Empower Patients to Better Health

[@mikebaguley9092]

Over many years of hospital 🏥 treatments and being bed ridden I found a way of monitoring the way I react with out help! Like many good people who do their own research, it brings peace mind knowing we have not gone insane. Bedside manner is a great way forwards in a positive way, through all of the symptoms and mood issues, yes we are worthy and not as shallow as people who would judge without a medical knowledge, blinded by egos. Thank you for sharing your advice with me and many other people ❤ have a good day, take care 🕊

[@CelticTechno]

I had two neurologist that fired me. Came in for an appointment and told not to come back no explanation. They gave me my discharge papers and shown how to get out of their office. I walked out of the room, went to my car and thought what the heck just happened. What did I do? Twice!! USA Doctors. Current Doctor told me I have FND, he told me I needed to go to a neuropsychologist and, to an OT. Then he made me an appointment to come back to see him latter but no information. If it wasn't for the internet I would still be in the dark. They need to give out at lest a pamphlet about it.

[@ClairLouise]

Welling up with this, I have been invisible for so long, thank you for seeing us ALL. Misdiagnosed 5 years ago, lost mobility, family, children, career and ridiculed by GPs and capita. This is so valuable. Current diagnosis, FND, Fibro, Generalised Dystonia Spondylosis, Osteoarthritis, Joint Hypermobility, Asthma, Endo, PTSD and more AI's. Had a Brain MRI and DWI scan this week to see if any degeneration has occurred in the last 5 years with the three bright spots in the white matter. I've been having two menstrual cycles a month for 5 years now. Single and celibate for 9 years. I still don't trust the diagnosis as had to have a second opinion. Symptoms started late childhood. Trauma and abuse induced I believe, worsening over time but again told to put up and shut up by family. I now use my music to project the emotional experience and try to relate to others pain and burden that most around them don't feel or sense. I went pharma free in 2019 due to chemical intolerance and now use botany, herbology and plant based medicine. Medical cannabis is the best I've come across. RSO especially but the UK is nowhere near taking it seriously for the medical treatment both physically and mentally. It really does work but I'm also aware that not everyone has the same experience. the CBG and CBN from the cannabinoid CBA is really having a positive effect. Anti seizure and sedative properties. Also tense machine is amazing. I advocate cannabis when used and not abused, just as any other drug, including alcohol. Truly valuable information here thank you. xx

[@stellaancimer8505]

Did you try keto, or carnivore way of eating, it is inflamation in our body that cause all this " disease"..i also suffer with pad, paralysis..but good nutrition is everything

[@tomsale5142]

I have heds joint hypomobility this is the reason we have fybromyalgia CFS ibs migraine asthma it's the àspergers.wgich I've found.i have which causes mcas but drs don't tell us heds society realy good 27 years for me just list my mum to severe ms heds obvously autism to

[@lucypeutros55]

Thank you doctor John 😢 doctors make think I have psychological problems and I tried so many medications for that and nothing helped me. With your videos doctor it made me understand what is wrong. They did diagnose me with conversion disorder. And until this time no doctor told me that I do have FND. I have been battling with all these symptoms since October 2018.

[@elysium009]

Thank you so much for this very informative talk and your dedication to research on FND. I have FND. It took over 6 years to get a proper diagnosis.

[@melhiggins3743]

I'm new to FND, about 3 weeks into a diagnosis after years of symptoms. I'm awaiting treatment in London and hope to make a recovery. Im also a healthcare scientist, and have found the symptom checker very useful so far. It's very comforting to have accessible tool kits like these to help navigate a recovery. Thank you.

[@keeeshable]

I went to see the neurologist movement specialist today. He said its temporary and that some kind of trauma must have happened in my life along time ago. This makes me feel like he's saying I'm crazy. It's hard to get any real help.

[@clairemcneildesigns]

Diagnosed late September last year, neurologist mentioned speaking to psychologist but then didn't actually refer me to a service your can't self refer to and also told me to "learn to live with my symptoms". The symptoms ended my career and have shrunk my world - would he have been able to just live with it had his career just ended. I waited almost four years to see neurology (pandemic) and walked away almost as clueless as I went in. I am hopeful for better understanding in professionals - I never ever had anxiety about seeing doctors for anything until now.

[@fndtogether-tnfensemble1228]

Thank you to FND Hope and to Prof. Jon Stone for this excellent webinar on FND.

[@janetaspinall1794]

Thank you for this really informative webinar. It’s so supportive and positive recognising this disorder .

[@ange4048]

This has been so helpful. Thank you for making this available. I learn something everytime I watch another one of these as I continue to get my head around this disorder. After a year I am still trying to get the right team around me just to begin treatment and without these videos I honestly don’t know where I would be.

[@larahunter2555]

I often have internal seizures that no one can see. It feels like my brain is in pain and that the brain itself is shaking, I get strong headaches and miagrains a lot but they are quite different to the brain itself when it feels in pain. Do other fnd patients have similar experience.

[@samalam98]

I have general brain pain and then also stabbing feelings going through my eyes and brain. Constant light sensitivity which creates daily headaches. I have random stabbing pain in different locations of my body every minute or so, same with muscle twitches. Autonomic dysfunction. You are not alone and there are many people out there also living life like this daily. It's extremely hard to comprehend and remember that it is not dangerous pain or something physically wrong. Unfortunately and sadly, it is almost impossible for people close to you to understand how your life is truely affected. Surrounding yourself with good and generally understanding people is the way forward, I've learned a whole lot about people since being affected by this.

[@correttathomas3204]

My US doctor has informed me that FND is not worth researching because there is no profit in it. Therefore no research will ever be done unless we do it for ourselves. I’m all in if there’s a way to do so.

[@Doodleflips]

Very helpful. Also wanted to ask if you have looked into the changes in FND in woman going through perimenopause as this would benefit a lot of us! I'm trying to get my Gynaecologist to understand that there is a link but it's an uphill battle, yet I have noticed personally that thee is a significant difference in my FND symptoms which correlate to hormone levels.

[@carrietreder8474]

I have noticed this in myself as well!

[@michelehenson]

FND is definitely hormonal in my case.

[@bhumeshyogi8337]

we are work on FND with medical therapy and yoga therapy

[@KathHands]

Having listened to almost the whole of this lecture, I feel disheartened and bleak about the future. I have a speech disorder.

[@carrietreder8474]

Me too 😢

[@KathHands]

@@carrietreder8474 I’m having help now from a Speech Therapist but so far it hasn’t helped much. What about you?

[@carrietreder8474]

@@KathHands I went to speech therapy and the techniques can help after an episode, but I went before I was diagnosed, so it wasn’t FND-specific. Mostly I was disheartened about the general outlook. It will take decades for FND to be recognized and treatments to be fully developed? I’m almost 50. I don’t have decades.

[@carrietreder8474]

I wish you healing, and peace. I hope you can gain something from your therapy.

[@nicolelubelski2760]

I was finally diagnosed with FND only recently though have had symptoms for many years. I had a pretty big episode & also lost the ability to talk. I do have 2 sons & I live with my youngest 22yrs old so maybe that’s why I opted to go hard. All day every day I read out loud. Obviously at first it was so hard. The brain knew but my mouth couldn’t form. It has taken quite a bit of time but I stuck with it. From waking up to going to sleep, at first just trying to form the letters but found that was hard so I started with very short words. 12-14 hours every day. I can now do sentences quite easily though I can get words &/or grammar or even pronunciation. (SPG, Spell Check & grammar on here are my best friends) not quite right. I am blessed with the ppl who know, so eventually at first I was lucky to get out 2 words very garbled out. They know me so, only, when they knew I wanted help with them saying the word for me, they would do. Now when words don’t come out right or sentences grammar isn’t right, they know that I’m fully aware of it so they don’t try to fix or say how it should be said. I jump on my iPad & write down how I did it wrong & then practice practice practice. Other than reading out allowed I practice basic sentences that I would use in every day. Also things that may need to be said in an emergency. Don’t get me wrong even practicing those key sentences can come out wrong still but less & less times. I have found that I’m a lot better around a hand full of ppl, these are the special friends & family who respect my needs & wants & others set my speech right back to square 1. Obviously this is just my personal experience & it will be different for everyone with FND. My love, thought & prayer are with all of us. I have patience with myself now, extreme patience where prior I didn’t even realise what that meant. I now do. I did see a vid of a woman who couldn’t pick up speech as a teen till the therapist taught her to swear which helped her so much. She jokes now that it was the first time she ever told anyone to F*** Off. I totally understood her on that. Good luck everyone, I know you can do this, just be patient within yourself. Never any pressure. ❤❤❤❤❤

[@marionjohnson2375]

I’m now 80. Symptoms started when I was 19.

[@theangrytiredzebra]

I'm so sorry 😭😭😭 how are you now??

[@tomsale5142]

As anything changed what has helped sorry to hear this

[@theangrytiredzebra]

I have hEDS and of course loads of comorbid conditions including syringomyelia. Syringomyelia causes spinal cord damage as it grows. My syrinx is feom T4-T10. I have spasms and uncomfortable movements ans pain everywhere in my body. Could this still be FND? I'm not doing well at all. Im barely hanging on. Two neurologists ive seen have said FND.

[@toiletresin]

Not a doctor, just someone else with hEDS. Commenting to say that I would not want an FND diagnosis in lieu of identifying more specific conditions/diagnoses that could theoretically be easier to deal with if properly identified. Syringomyelia sounds like it would cause a host of "functional" problems, as does my cervical spinal stenosis, but I personally wouldn't find a label such as "Functional Neurological Disorder" to be helpful for practical things like finding a suitable wheelchair (unless it would help with that?). Like, I'd rather just have ALL of the imaging and disease rule-outs and to know exactly which joints are messed up and to find the structural problems that might be missed if the doctors were to be stuck on "FND." The guy in the video seems to underestimate how much there is to lose by focusing first on "FND", as if it wouldn't halt more helpful testing (I think doctors should just refer to unexplained symptoms individually, rather than diagnosing all of someone's undiagnosed symptoms with a single, stand-in diagnosis that may sound to that person's other doctors like an endpoint when the person actually STILL hasn't been completely assessed for what I'd call "real" explanations). I think that the existence of FND as a diagnosis adds to the medical gaslighting issues in the medical system, even if it offers some degree of validation to those dealing with unexplained symptoms (I'd prefer knowledge and power to implement practical solutions based on specific, objective data that I can access myself, e.g., MRI data). (I don't trust that all medical professionals have the cognitive capacity to remember that someone with FND may not have been adequately tested for structural problems, nor do I trust that they all understand how significantly EDS and other genetic connective tissue disorders can affect tissue.)

[@theangrytiredzebra]

@@toiletresin I completely agree. It's very overwhelming and stressful. I'm angry over it but not sure what to do besides keep trying new doctors.

[@tomsale5142]

​@@theangrytiredzebraI have heds to diagnosed now 43 CFS 26 years fybromyalgia 6 same be had pots now ok chronic migraines have you looked at CCI and Lyme's as with heds and autism like myself detox pathways are different awaiting sleep apnea test do you have lot of pain with regards

[@kengel100]

Thank you 💜

[@olgamayerhoffer7517]

Thanks a lot for the webinar!

[@richardfromcornwall5492]

I registered for the webinar but at the last minute, pulled out as I didn’t have a specific question to ask and was not confident enough to try and enter the ‘chat’ without one! Now, I’m really disappointed I didn’t but glad that there is this recording which I will definitely watch, thank you. Will there be an opportunity to ask a question in retrospect?

[@tomsale5142]

Yes autism with heds albeit diagnosed 43 causation

[@fionasmith72]

Thanks so much for this video. it was really helpful. I have had FND since i was 18, i'm now 31and only feel like I have had any support or understanding of my symptoms in the last year. My seizures seem to come in waves but the limb weakness and increased pain and fatigue are fairly new to me. I find this challeneging as I was a very active person. any advice to build up my strenght again?

[@stellaancimer8505]

What are you eating?

[@tinamchugh21]

My Neurologist Dr J Oswald has referred me to you Dr J Stone, in December 2022. I have suffered for 7 years, don't have any sort of life & in constant pain & loss of funcr5 my right leg & loads more. Could you give me an estimate time of your waiting list & please can you try get this clip sent to all doctors practices, as this is where the problem is, there's no information getting to local doctors to support patients for doctors to understand first of all would REALY help myself & others with this condition & understanding it along side them instead of it becoming a heated conversation & I then feel worthless to the NHS just a number to them. Thank you

[@rohinihyde4766]

Brilliant discussion - thanks very much. My FND symptoms began 5 weeks after my 1st and only astrazrneca jab in sept 2021. Could the vax have been a trigger?

[@vickybeckford8132]

Good day please could you help me my partner is suffering from fnd she is getting ignored I'm with her and she in pain everyday I watch her body part just move I take her hospital doctor but they don't help and to me they treat her like she's lying I don't no we're to take her it's getting worse and I don't no what to do please help me do you have an email or someone I can call to get her help

[@nicolelubelski2760]

I have only just been finally diagnosed with it myself so I won’t be of any help as I’m only doing as much research as I can for myself & am have just learnt how to talk again though I’m still struggling with that but am getting there. I think that’s definitely the starting point. I have noticed on some of the FB & IG pages they say not to mention anything that could be a trigger. I know some of mine now but no where near what I need to know. Have you found the main triggers or at least a couple of them? So I guess the best is to get as much community help as you can on the internet. Find the FND community in your Country. As you would have seen they are only just starting again on FND though a Century ago they were quite aware of it. My thoughts go out to you❤ keep researching & social media. As I have no idea what country you are from, but if your country is very behind, you may find other ppl with FND in yours & even someone in your same City. Network everyone. As they say with this & really everything “Knowledge Is Power” . Stay strong for both of you. Please remember also as a primary carer of someone with a severe disability, that you also need down time. It helps to keep you refreshed & ready to take more things on with a clearer head. I truely hope you have some type of services where you are & medical ppl educated in FND. You know never be shy about sending Links etc to your girlfriend’s medical ppl & GP.

[@user-xt8xm3bf2d]

Ive been told for years i had nothing wrong. Even this year at dunedin hospital in new Zealand after a big seizure and then whole left side weakness not able to walk or stand again. Speach slurred and face dropped on left side. I got yelled at by doctor and told its all in my head .i then went to issis in Dunedin and they said i had FND but i still feel that its all in my head. Im in a rest home now and the nurses treat me as everything is in my head. I have chronic pain in my back . They have always blamed mental health in past. It has really affected me. There is not of information here in new Zealand . It is great to hear your information. Hopefully we can get more of the information around i dont want people to go through what I have. I got to trying suicide as i believed it was all in my head.

[@andrewkerridge1597]

Hi my name is Andrew and I have had FND for 3 years and I have had over 4000 Seizures from the 26/7/2021 and my seizures can go for one and a half hours and there is bad very bad and very serious and lots of things set me off about 50 triggers and I would love ❤️ some help NDIS will not help me out with anything please 🙏

[@dorothyhines6951]

I was told by the neurologist that there was no treatment or help outside anti-depressants and that I must have been abused in childhood. I am finding this to be a diagnosis that just lets the doctor refuse any investigation into anything with a constant answer that it is FND and in your head. As I have been offered no help I can’t see how this information is of any help at all. It seems like a hopeless diagnosis. I am also confused how it doesn’t cause pain but we have chronic pain and it is nothing by FND so no way of treating it and no need to investigate it.

[@ila9063]

My neurologist has told me physio, OT, psychology, and nutrition can give results. He told me CBT and SSRIs alone won't do much as my brain needs to be sort of "reprogrammed" and physio/OT is the best way to do this. But it needs to be led by people that specialise in FND or that are willing to learn. Having done physio for 6 months now, I highly recommend you give it a try. And be ready for it to take years to get where you want to be.

[@cardamon_co]

your neurologist is wrong, they are a multitude of different treatment options but it takes a while to find what works for you, you don't have to have been abused in childhood either that just makes you more likely to develop fnd, your pain may be fibromyalgia, a common comorbid of fnd

[@nicolelubelski2760]

@@cardamon_co so true about the Fibromyalgia, it’s very common with FND so it’s been saying almost every reel & thing I’ve been reading. I have had a Spinal Conditions as well as FND, actually 3 since I was diagnosed with just the Spinal at age 15. So lucky, unlucky umm hard to say, because of the pain for those I have been taking seriously for that pain which is 24/7 but the Fibromyalgia attacks can be worse a lot of the time than the spinal. It’s real pain you are dealing with. I’m so upset that the medical professionals don’t take this pain more seriously 😭

[@tomsale5142]

Yes seams fnd comes with CFS fybromyalgia decades for me found out I have asperger's ADHD heds check out rccx gene theory what journey.mune started after a fall 26 years ago have you had OCD as I've found that's risk factor

[@tomsale5142]

How are you now do you have heds I have all your diagnosis and more all same thing pain worst for me

[@stellaancimer8505]

We should talk about nutrition, healing the gut, stop inflamation, ect! Keto, carnivore is miracle for that kind of " disorder" doctors never asked about food, finding insulin corelation with the Brain, ect.. Just guesing..sad, so sad

[@theangrytiredzebra]

That's the ONLY thing I won't change to get better. I could never go back to eating meat but maybe vegan keto would help.

[@stellaancimer8505]

@@theangrytiredzebra you dont need to :)

[@theangrytiredzebra]

@@stellaancimer8505 so do you think vegan keto would help me? I have hEDS and Syringomyelia, second neurologist said FND yesterday. I don't understand because my syrinx causes spinal cord damage.

[@stellaancimer8505]

@@theangrytiredzebra i Just know that High fat is the answer...this is what is lovering inflamation in the body..i am sure it Will lover your symptoms..do you have any other symptoms?

[@theangrytiredzebra]

@@stellaancimer8505 I have a million symptoms but I have hEDS and Syringomyelia so all the doctors I've seen aren't knowledge I'm either and they both have over lapping symptoms with FND so I'm wondering if I'm being misdiagnosed.

[@PurpleMomgoose]

56:45 is he talking about shrooms?

[@samalam98]

I didn't clock that at first but I think you are right you know lol. I preface by saying I still am a big advocate for the study and potential use of MDMA, LSD, K, Psilocybin etc in psychiatric disorders, with the right guidance and care, and I myself have seen benefits in the past. I would like to say that I believe psilocybin can definitely have a modulatory effect on neural pathways. I know first hand because it is what triggered my FND in the first place. A combination of that and extreme stress. Ironically, I was trying to fix things in my life and made them worse than anything I could've imagined. Not a day doesn't go by where I don't regret my choices, and that in itself is hindrance to my recover sadly... A blessing in disguise though, I don't take drugs anymore. I never saw an easy way out of that for myself but as soon as FND started for me, I stopped everything🤷🏼

[@tomsale5142]

​@@samalam98do you have alot of pain do you have heds