FND- what is functional neurological disorder? Dr Phil Parker
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- เผยแพร่เมื่อ 5 ต.ค. 2024
- Dr Phil Parker, university lecturer and researcher discusses FND, its history and recent advances in approaches to helping sufferers find solutions.
You might find reading Charley's journey from FND to health here useful lightningproce...
And D Phil's interview with Dr Sarah Lidstone is here podcasts.apple...
Or contact Dr Phil on www.philparker...
I am almost crying hearing this. The amount of times I was accused of faking being ill by doctors is ridiculous. Finally medicine is catching up.
Thanks for leaving such a lovely and important message
Yes Sarah ive suffered 5 years now and seen countless neurologists and had work mates and friends all not believing me. The non believing is the worst side and most frustrating part of the illness. Dont let no one tell you this isnt an illness! We are really suffering. Im still waiting for treatment and im really losing hope
I’m watching this as I lie in the the hospital, recently diagnosed with FND. I was able to send this to my family to help explain what is going on, since I can barely speak at the moment. Thanks for this!
So glad you found it and it's helped
Hope yr able.to return home as soon as possible 💛
Praying you feel better soon I have the speech issue too.
I'v recently been diagnosed with FND. I left the conversation with my provider feeling invalidated; that my symptoms were not "real". That was the overall message. My partner was present during the conversation and despite what he has witnessed, he too appears complacent regarding my symptoms. He appears to have absorbed that there is nothing wrong with me. I have a suspicion that I will go through this alone.
I believe many in the medical community have yet to grasp/accept the concept in which Dr. Parker has so eloquently explained. So until the science is heard, many of us will continue to suffer.
It's moving, and shocking, to see how many comments on the video echo your experience... really pleased this little video has helped..
For such a short video, this explains things well - and may be more tolerated by people I share with online because of it's brevity!
Thank you for this. For many of us diagnosed with FND hearing this is so helpful. Thank you.
Thanks for leaving your comment- I hope the video helps understanding of the illness
Yesterday I was diagnosed with FND, it is such a gift and relief to find this and several other, informative, rational and well structured and communicative videos…..thank you so much! Having every symptom, in a life changing severe form (bar seizures) for the last 6 months, and milder symptoms for over two year’s previously, my life has turned upside down without explanation. Today is the first day I feel like, I am pivoting, and starting a new positive journey!
Great to hear. Once you've watched some of our content do get int ouch for suggestions on how to move forward
Ive finally after 5 years been diagnosed after many different referrals to neurologists..Funnily enough my Consultant gave me the bad software description too lol. I really hope now i can finally start to get my life back as i have to admit this has pushed me right to the edge of utter despair!
It is horribly traumatic to seek help at an ER having fallen and experiencing terrifying uncontrollable movements only to be told they won't even give you a neuro consult "since those aren't REAL seizures" and "your scans show no breaks so it's not an emergent issue". The 20 somethings in ER and working as EMTs need MUCH better training, as do the actual neurologists!!!!
Thank you. It would have been good to hear what the new approaches are.
If it’s just as debilitating as MS why can’t we have the same support as MS patients? The one thing I need to help me with this is something to stop these god awful tingling and vibrations in my body. It’s a horrendous condition with no support or ongoing care from the NHS. Thanks for the video though as I hope it will get more people to believe us.
Due to head trauma, one boy I know has been diagnosed with NFD. Symptoms started with memory loss, to difficulty in maintaining a good balance , then to drop attacks, etc. His conditions are improving, but it is still not recovered and it seems a lot of psychological issues. I do agree that technology couldn't detect the problem ( specially with a swelling head) . Also, the timing is important as doctors did not scan the child until a whole week has passed.
Just diagnosed after a year, but I am fortunate that I have always been believed by every dr or health practitioner I have met. But! I did my homework before I started and found drs etc that work with the whole person and really listen.
Thank you for this. I was just diagnosed after 13 years of testing and searching. This is the perfect video to share with family to give them a better understanding.
So glad it's useful
I live in Sacramento ca I need help finding treatment
Thank you so much. I have had FND since I was a child, only to be diagnosed at 24. I was not believed so I would have seizures in my room so I didn't disturb anyone. I was stepped over while having a seizure episode in the kitchen because my mom thought I was faking it. The pain was very real but I kept telling myself its not real - even when it hurts.. Thank you so much.
Thank you so so much, I truly cannot express how greatful I am for youaking this video. I have FND and Functional Seizures and I've been told by multiple neurologist that I'm making it it, that I'm mentally ill and that it isn't that bad and I'm not disabled. I have no history of mental health and it really destroyed my confidence and made me question my own feelings and symptoms. I will be sending this video to all my loved ones as this is truly what I believe FND to be, I believe there is a physical thing wrong that we just can't see yet. Thank you so much for believing us and our very real and scary aspects of FND
Thanks Jess, I'm so glad you found it useful. The other important point is, as it's a 'software' (signal processing) issue then, as software is easier to upgrade /reset than hardware, finding solutions by looking in that direction provides a great potential for a change back to a pre FND state...
There's so many things that could be wrong in the body and instead of deep investigation a large number of people are given this diagnosis incorrectly
Thank you for this. I have been on a drug trial for a year and a half for cancer and have recently started to get neurological issues that feel like either Parkinson's cerebral palsey or seizures. And shooting pains in body. But symptoms come and go and especially worse after taking my tablets. I've recently had a brain scan which came back normal then I thought maybe I'm going crazy. But after hearing this I'm relieved to know I'm not and that other people have experienced this too. Thank you kindly xxx
Thank you for this video. I was diagnosed today and what you say in the video makes sense.
I believe I've been misdiagnosed with FND but actually have MS.
I have progressive oropharyngeal dysphagia also.
Thank you so much. I have a few people to share this video with.
Please do!
@Dr Parker, the only think I may wish to clarify is one comment you mentioned as fact: that the prognosis of patients with FND is the same as those with alternative diagnoses such as MS or stroke. Certainly the neurologic (functional capabilities) prognosis is far better for FND .
Yes that's a good point. To clarify the research says: Patients with FND who are misdiagnosed with MS have a prognosis similar to MS but which may improve with more modern evidence-based treatment. 10.1007/s00415-021-10436-6
Very encouraging. Thank you Phil.
Thank you so much for this clear explanation. I will direct my neurologist to it!
I'm so glad you found it useful
Dont give up Anne-Marie! I had to get referred 4 times to neurologists and each time they all gave different advise. At no stage have i been given any treatment and ive suffered terribly for 5 years. Ive finally been diagnosed with FND and offered specialist treatment. Keep pushing and dont let them tell you theres nothing wrong..Best of luck
Antidepressant Withdrawal Misdiagnosed as Functional Disorder. Adverse physiological symptoms of antidepressant withdrawal are regularly mistaken to be other problems to the detriment of the patient.
God bless you for this info. Here in Spain. They just sent me home in an ambulance the first time. Because I couldn't walk.
The second time they sent me to the psychiatrist.
It is been 4 months, I am still at home. I cannot work, I've realized my triggers are exercise, my mygrine, multisensory overload, anxiety...No one cares here.
FND is a waste basket diagnosis.
It’s an easy out for the uninitiated or lazy physician.
I have NMOSD/Sjogren’s/Dysautonomia after first being positive for Lyme Disease. I was equally gaslit early on, and now I’m crippled in nursing care at 34 y.o.
*Note: I had positive antibodies for NMO 3x and still was gaslit (1x CSF; 2x Serum).
I am a OR nurse and recently diagnosed with FND and PNES. All my diagnostic tests are negative. 24 hour eeg, CT scan, MRI, MRA, MRV .
I'm not sure where you are based but I am in Australia and spent 3 months in a mental health unit and was told it was purely a mental health issue this was at the end of 2019 so I really hope the education reaches everyone soon. Thank you for this it really helps to know it is a real issue.
That's awful to hear - I hope you are getting the help you need now
I am in Victoria and have had similar experiences. If you can join the FND Australia Facebook group and the FND Hope Page based in the UK. That understanding and support has been so valuable to me especially on the worst of the worst days. Take care. You are not alone. I have no faith or confidence in most Doctors and would rather die than go to a hospital ever again. I was diagnosed in December 2020 I think and then left with no support and literally on the footpath. My last admission was for 2 weeks in complete paralysis and they did not do anything that my specialist in QLD recommended. You are not alone. Australia's medical systems are terrible and so far behind the rest of the world based on my lived experience. Thanks to these kind Dr's you tube and Facebook are more reliable and honest in their assistance.
Absolutely like your video I just wished I felt postice and not a failure my FND is tremors seizures balance can't weight bare wheelchair bound had physiotherapy then they said sorry there's no more they can do 😭 I became mentally unwell hearing this
So sorry to hear you are going through this - do email me if you'd like some suggestions on approaches that we've found helpful info@philparker.org
The new neurologist I have is adamant it’s mental health related...even though I have no mental health issues, I’ve been assessed by a psychiatrist. Waiting further tests before it’s confirmed but that’s the road he’s putting me on
That's a tough situation to be in- it might be worth looking for a neurologist or practitioner with a background in working with fnd
I was diagnosed with fnd but after mri of Brian they found lesions, I had a lumbar puncture which showed postive o bands, so to cut a long story short I know have both ms and fnd and it is extremely hard having both because when there is a relapse I never know if it’s fnd or ms
Dear Dr Phil, thank you for this. Can you recommend Neurologists who specialise in this, please? I'm Scottish, living in Spain, and here, it's dismissed as purely psychological. If nobody here helps me, I will get myself over the the UK for assessment. I've been having these symptoms since I had the first dose of the vaccine (4 week now, spasms started 5 days later, and I have nerve pain, blue toes, dimply veins on my feet, short term memory loss, cognitive issues, and electric shock sensations in my ear and brain). I have MRIs and specific blood testing coming up as EMG was normal and routine bloods were OK, despite having declined a lot compared with my routine blood work 2 weeks pre-V. It keeps being suggested as 'psychological' even though I have new mass depigmentation all over my back, viral and bacterial infections, and visible changes in my feet. Auto-immune has been loosely suggested, but I have thought FND since the beginning. Testing will bring more answers hopefully.
Sorry to hear about your situation. This might help as a link for finding a neurologist www.fndaction.org.uk/specialist-care/
Also if you want to find out more about our mind-brain-body approach to FND then do get in touch
Wonderful information
Thank you so much for this video. I was suffering for this
many years but every doctor I
met said that I am okay.
But, I am not okay.
How can I get diagnosed with this?
Have a google for fnd specialists in your area and get a consultations with them
Dr lidstone diagnosed me yesterday and suggested I watch some of your videos. Thank you for explaining! I frequently have electric shock feelings and burning sensations and I will be starting physio for my physical problems but I’m still confused on what I’m suppose to do for my pain sensations, if anyone has any tips or you have any suggestions please let me know
That's great news you've found Dr Lidstone- you might find my 'how pain works and how to calm it down' videos useful... I'll post the links for you here...th-cam.com/video/UhlYzzaRrh8/w-d-xo.html
th-cam.com/video/lCpqT2WrsNU/w-d-xo.html
I hope that helps
@@DrPhilParker thank you!
Dr. Phil, I have to wonder if many people diagnosed with FND are having neurological complications precipitated by prescription drugs. Once they have this diagnosis, the dosage of the drugs they are already prescribed often go up and this could confound the problem?
Hi, Yes, that's a good point. It is a possibility, it does depend on the drugs and their side effects of course...
Does conversion disorder only cause neurological symptoms? Could it cause fevers, joint pain with swelling, inflammation in blood work? Many rare diseases are given waste basket diagnosis in the beginning until technology in the medical field finds links, genes and cause to give a organic diagnosis. Conversion disorder, new to me sounds like an insult to suffers and possibly just a horrible disease that has yet to be properly diagnosed.
Yes the old label 'conversion disorder' has generally been retired (thankfully)- it may be that many other diseases and symptoms will be grouped with FND as we recognise that neuro-processing is difficult to find on blood tests/scan etc
Is it normal to have nerve pain for 7 years like even wind hurts me now and tight clothing . After my arm had tremors and got paralysed i got this diagnosis
I have some black outs like my memory is choppy at best I wouldn't even know but my family says things and then I feel like I have small flashes pieces of memory but only pieces of things and they're not in order of that conversation that my family will say we just did last week. It starts the memory trigger for me to think about that then I feel it like it's not in real memory more like a Deja Vu ??? what the heck is that I've been going through this 2 plus years...my pain level was so high which we thought was fibromyalgia for past 6 years... then I had been diagnosed with post-traumatic syndrome a.d.d. and then bipolar I went through that for two years and 17 different anti-depressants meds which made me worse and tried two differnt shrinks ...i was getting a very angry and frustrated as if I had no patients for their conversations with me... ...i walk out ....was really weird like I was mentally insane or something and I knew the pain levels in my body was real for the past six years the pain what's my biggest problem then and now I'm into a whole new thing over the past two years with this memory I also sometimes wake up and I'm on a floor don't know how I got there.. I've had sleep paralysis off and on ... I'm in this memory thing... finally last week neurologist diagnosed me with FND and a couple other neurological issues and POTS ... things that I can't wrap my brain around yet. 😳😳 I've been on FMLA for almost two solid years saving my career. But with literally no help with the paperwork and my insurance policy for leave of absence...I screw up everything... I give up with the amount of paperwork finally lost my healthcare insurance now on state insurance made me switch doctors because I had to... how do I get help with figuring out documents in getting them places that they need to be at so that my work policy insurance will at least help me before I run out of time January 2022. I have Cigna long term policy but i CANT get my paper work figured out all the time theres something and i no longer can do it.... is there social workers or someplace like that I should go? By the way I had my job almost 20 years in a big corporation and I climbed that ladder and always advanced... and now I m barely able to form a complete sentence I avoid all calls because my speach and making sense of what the conversation of the call and what they are wanting from me...but I can somewhat do better if I type or text ....i also feel the need to read like for like 5 hours a day its my only sense that works..which I have no sense of time at all ao it suprised me by clocks and time passing.....even my taste is completely different was always the big family cook...now its even hard to make normal dishes. I am lost. My mom is 77 and runs circles around me. I CANT explain the FND thing to her at all.... I get lost in my own home town then the panic attacks in public i get sensory overload...noise loud and things feel very FAST. Neurologist Doctor that just diagnosed me said ride a bike ??? Lol see you in 2 months? Oh put me on heart med to slow heart rate...but really ride a bike???? for 120 mins a week 😱heck I can barely walk 1/2 time not coordinated at all sometimes I can't get out of my bathtub. I m lost.
Check out Anthony William, the Medical Medium, folks.
Im worried about appriaching my psychiatrist and neurologist about the possibilty of this being what is wrong with me. 😭
oh Yes I get it.
However once the diagnosis is clear there are great solutions for FND
Ty,I have been going through this for 9 years and I don't know what to do?
I see all the DR.S. And it doesn't work
So sorry to hear you've been having such a tough time. Do contact me and my team if you want some new options that we've found helpful...
Hi Dr Parker, would thr Lightning Process work for FND?
We have a lot of success with FND, so it's worth a conversation to see if it's a good fit for your case.
My brother has epileptic and he talk to slow and shuttering even his movements are too slow .. we really don't know if he has a FND or not 😢😢
Are functional tics a thing?
Absolutely- www.neurosymptoms.org/en_GB/symptoms/fnd-symptoms/functional-tics/#:~:text=Functional%20tics%20are%20a%20type,but%20not%20of%20automatic%20movement.
We see a lot of this, especially in teens atm and some simple brain retraining tools often help resolve it. Are you experiencing them yourself?
To cut a long story short,I have been having twitching in Botha calves for the last 7 months. And I have recently been told that I have bfs syndrome by a neurologist, and a doctor has also told me I have functional symptoms. I’ve been told by both that Botox won’t make a difference, and that I need cbt therapy. I’m not arguing this, but surely Botox could help, because it stops nerve endings being stimulated. Anyone got any advise? Thanks
Are you finding FND after getting the vaccines? I have minor fnd 5 months after Moderna
My dad was diagnosed with FND just yesterday, 3 months after taking the moderna vaccine…
One neurologist says I have fnd and 1 neurologist says I have stiff persons syndrome whatevervit is its progressive
Have you noticed an increase in FND cases after the coronavirus vaccines. If the answer is yes hope you are not accused of causing vaccine hesitancy.
Hi Rohini, I've not noticed this personally, but a bigger pool of subjects, and a proper research study, would be needed to help clarify this...
I have seen so many doctors in the last 9 years and all with their own diverse opinion . this is what made me go mental.
the amount of disrespect and abuse... i would even go so far to criminalize all those so called doctors and healthcare workers.
because what they did was hurting me , mentally and physically . i even ended up in prison because i could not handle it any more .
i have seen a psychologist we did a module about PNES and concluded i do not fit the profile .
And still nobody treats me with respect as if it is all not real and caused by some mental issues .
this is not the case at all .
The term PNES is very disrespectful and should be removed even healthcare workers believe this and have no respect for people with mental issues to begin with .
If i did not have my sense of humor i would have killed myself or someone else , i truly believe someone else in my shoes would have done many bad things.
And it is understandable because everyone has the right to protect oneself in a world that does not want you .