What Causes Functional Neurological Disorder (FND)?

[MorgueInTheVoid]

Oh my God I knew you have no idea how good it feels to hear someone explain EXACTLY what I've been trying to explain to everyone who never believed me.

[michaelacurran-cox]

I am one of the neuroscience nurse specialists for the Brain and Spine Foundation in the UK. We get calls for emotional support and a need for understanding. Thank you for sharing this valuable information as there is very little support or resources for FND in the community. However things are slowly improving

[amg]

Thank you soo much for sharing this. I've been needing this for 6 years. Everything you said is all soo true. Dr's run all the tests to rule everything else out, then they just call it fibromyalgia or dysfunctional system, and then you're on your own with the unknown, and your life consists of research . I'm soo glad to have subscribed to you and to find this video today.. I wish you were my Dr. Your rhe best.

[AnneAlready]

30 years of CFS and fibromyalgia here. I know you're correct on this.
Thank you Dr Sullivan for you careful attention to your patients. x

[brucejunboxing]

Two and a half years with FND debilitating symptoms! All tests been normal yet I've not been having a good time. My symptoms started after a neck choke, thank you for this video ❤ keep fighting and pushing x

[CritRedesign]

I was diagnosed in 2014 with pseudoseizures, then non-epileptic attack disorder (NEADS) then Functional Neurological Disorder (FND) which is from my understanding, the same diagnosis just with updated terms / names for the condition. Your points from the 8 minute part onwards hit hard. Thank you for your words and the respect you have shown for myself and people like me in such a refreshing way. I've saved this video so I can show those people in my life that can explain me better than I feel I sometimes can.

[regward]

THANK YOU! An exceptionally clear, comprehensive, and yet concise, explanation of FND - a little understood and therefore elusive of diagnosis condition. In months of investigation to "label" my symptoms, , this is the best snapshot of FND I have encountered: bravo!

[moodle]

Sooo interesting. Especially the distraction part. Similar to when people with Parkinson’s become frozen when walking….and counting out loud helps some to start moving. The brain is amazing

[HerbTetef]

I also have hEDS, but my trigger is CRPS type II (the presence of nerve damage). My tremors & subsequent myoclonus started 6-8 months after getting CRPS (post bunion surgery & nerve damage from tight cast, which the ER refused to remove due to crushing pain and blue toes). I have also considered that my myoclonus and tremors were caused by antidepressants they gave me as part of my pain med 'cocktail' for CRPS pain since there was a correlation between starting them and the start of those symptoms. First I was told I had "conversion disorder, " & I saw 3 psychiatrists which ALL said "NO CD." If it was CD (psych), then I wanted to take care of the psych issue. However, going through CBT, PT, med regimen (total 38 different meds), ketamine infusions, HBOT, and of course therapy, they have not resolved. I think they think it's psych because the sx are intermittent. However, I also have other comorbidities (central sensitization w/ allodynia & hyperesthesia, dysautonomia, POTS, MCAS, arrhythmias, anxiety/depression) from CRPS, which MDs either don't understand or contribute to CRPS....thus, 'it's in your head' &/or 'it's in your brain.' Either way, no one can rule out or diagnose anything and there is no treatment, much less cure. But for CRPS, I would not have these symptoms! My MDs always elude the fact that I have ongoing CRPS. My CRPS is NOT in "remission" and still meets (after 7 yrs) Budapest Criteria! So to be now given a FND (from CD) and thus I DO have a known neurological condition, which is ignored. Dr Sullivan, I am open to your knowledge of patients with CRPS & FND. Thank you.

[sarahcomeau]

Thank you so much i was diagnosed in july i spent 19 days in the hospital thought i was dying i end up being bed bound . Hospitals is a trigger of mine so being there was making me worse worse they ruled out everything else and said i have conversion disorder from too uch anxiety taking over my body . I was angry lol because to me it sounded like its all in your head. I decided to find videos so i can understand what is happening to me found you so thank you for caring. Been in therapy a long time for cptsd so i can see it make sense but its terrifying.

[Lillymae-gqoe]

Really glad I’ve found this. I suffered a very traumatic experience some years ago from a waterskiing accident. It left me with partial paralysis for along time. I have extensive sciatic nerve damage and a prolapse disc. My mental health has become quite poor over the years and I’ve developed fibromyalgia, ankylosing spondylitis and arthritis. I’m having days where my body shuts down with fibro symptoms, and my body will literally shake like I’m having a epileptic seizure. I don’t have epilepsy or ms, however my ability to walk properly, my speech is unrecognisable at times, and certain parts of my body will either spasm or I have uncontrollable shaking. I’ve addressed these symptoms to my doctor, which he’s got me to have a CT scan, with no foreseeable cause as to why I have these debilitating symptoms. I’ve noticed when I’ve have periods of stress and high levels of anxiety my functioning of movement is crippling and my mind just shuts down. It feels like I’m experiencing, too much information overload and my brain ceases to function. I need help to walk during these difficult moments and my body feels like it’s not willing to work for me. I was sexually assaulted 13 years ago, and all my symptoms have gotten progressively worse. I haven’t seen a neurologist yet, I’ve only just stumbled across this video, so a lot, if not all of what you’ve just said resonates with how I feel and experiencing. Thank you for sharing this. I’ll be looking into being assessed for FND.

[Rainbowqueen]

I have just been diagnosed the other day after years of non epileptic seizures, mostly while i’m sleeping, i had all the epilepsy checks, i got diagnosed with non epileptic seizures. I have a tremor that starts in my right arm, it can get really violent and turn into a full blown seizure, i basically have to hold my arm down when this happens. I have not had a seizure for about a year and half until a few weeks ago, which was disappointing, it all sends me into a very dark place, i absolutely hate having seizures they make me feel like i’m slapping myself when in reality i am not, awful feeling. When they start i feel really paralyzed, start fitting and then pass out, i also suffer with biting the tongue when this happens, i get terrible mouth ulcers and end up not being able to eat at all. i’m only in my 30s. I am glad that people are getting diagnosed instead of doctors/neurologists not knowing how to help people. thank you.

[leeannhill]

I have been diagnosed with FND been suffering for the past 3/4 years. My left hand side is not working well and walking is not so great. All I can say is keep going I'm in the UK and the waiting lists are very long! So thanks for sharing I'm on a mission to get my body back it's been alien to me for too long

[dezaraepringle]

I was diagnosed 2 weeks ago, and honestly made me feel like I was crazy. I have been telling Dr's and neurologists that some thing is wrong for a few years, and that my tremors, and seizure like symptoms were NOT cause from my normal migraines (had since I was 3). But was told everything from yoir faking knock it off, to are you seeing a counselor, and even given the suicide hot line 🙄 after diagnosis I dropped like a hot plate. I'm now advocating for my self.

[vinchannel]

As someone with FND, this video is very accurate & helpful... I use it to explain FND to those around me and understand it myself more..

[michellec]

I had a father that beat my mother a lot. I have been being tested for MS, for 13years. Never MS. Finally a new neurologist diagnosed me with FND in 2 visits.

[annemarie]

I was diagnosed with FND right after my diagnosis for long covid. Here's the order of things that happened: First, I had a bad year anxiety wise bc I went off my meds (I'm all anxiety, not depression). Then a best friend from childhood had a medically assisted death after being diagnosed with stage 4 cancer. Then I got Covid (which was just an upper respiratory "cold" for a week. THEN...the thing that pushed me off the edge...long covid. I got massive vertigo, and was bedridden for a week and a half. When that was over, I got horrible nerve pain in all my limbs (from bicep to fingers and thigh to toes) This nerve pain was strong electric shock sensations, pins and needles, and burning. That drove me nuts and my anxiety sky high. I got put back on anxiety meds, and take Lyrica for the nerve pain which WORKS. 98% of my nerve pain is gone. BUT, when my anxiety gets a little out of control, my nerve pain fires back despite the meds. When I get a handle on my anxiety attack, my nerve pain goes back to being managed. There truly is a brain-body connection. I DID get long covid, but the bad year I had before that mentally definitely left me as a sitting duck for FND.

[anamariadan]

Hi, and thank you for this amazing eye opening video. My experience with FND has started right before I gave birth to my daughter, 2 years ago, staring with blurry vision, trouble using the toilet, NHS blamed it on birth calling is 'one of those things' (?!), c9ndltinuing with what it looked like 2 ministrokes, 1 seizure, loss of control of my lower body, bladder and bowel, sudden swelling of the face, fatigue, not being able to focus or understand even the simplest conversation, eye lid going droopy etc. As I'm writing this comment, I have yet again brurred vision, like after looking right into the sun. I have had a head MRI 2 years ago, it came back normal, a CT scan about the same time, came back normal, a spine MRI about a year ago, came back normal, eye clinic scanned me and said it's all normal. So everything seems fine, yet i get flare ups of various weird things happening to me. It all makes swnce now, after finding out about FND. I need help and I don't know where to start. I was watching your video in tears. Hopefully I'll be able to dot the i regarding my medical condition.
Sorry if I made any mistake, I can't see very well what I'm writing.

[CoffeeWholeBean]

I was diagnosed with conversation disorder 14 yrs ago. Over all it is at bay, but it comes on as you said with stress. It is definitely frustrating. I am and have been in counseling to try to reprogram my brain so I know how to look for triggers and hopefully avoid them as much as possible.
Recently, I was really bad. Like I could barley walk. I had 2 MRIs etc... nothing. I seem to be coming out of that, but those who have this know how incredibly frustrating and to an extent humiliating this disorder is. Thank goodness my wife who has been with me from day one of this is understanding and supportive.

[RunPJs]

I'm in the UK and my Doctor text me the link to the neurosymptoms website created by Professor Stone.
When I saw the Neurologist in Scotland he said he was very fortunate to actually work with Prof Stone.
Basically though...he couldn't tell me anything I didn't already know. I had already studied fnd, anxiety, chronic pain etc etc....and was in counselling, doing yoga, meditation and generally taking better care of myself. All these things relieved my symptoms.
Was also reinforcing those networks when I noticed issues and did lots of swimming that seemed to completely make my symptoms disappear.
FND is such a complex and frightening condition but I've learned it's important to have faith and trust the process.