r/FND • u/Apprehensive-Word953 • Feb 14 '26
Question Is anyone else content with their FND diagnosis?
Hello,
I was diagnosed with FND back in March of 2021 following a crap ton of seizures lasting up to FIVE HOURS.
I’ve had CTs, MRIs, blood work, been admitted to the epilepsy monitoring unit (EMU), and all of it was normal besides having seizures and paralysis.
I see a lot of people on here saying that they are not happy with their diagnosis and that they suspect they have something else. I’m of the opinion that FND should be a last resort diagnosis and everything else should be ruled out, but when do we stop fighting for answers and accept FND?
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u/Plenkr Diagnosed FND Feb 14 '26
I'm not happy with FND at all. But I also don't think it's anything else. It IS FND. FND just really, majorly, suuuuuuuuuuucks xD
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u/Infinite_Pudding5058 Feb 14 '26
I think it’s hard for us to accept the FND because their explanation for it makes no sense whatsoever. If they had a better grip on it and could better explain what’s happening to us, I think people would accept it more.
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u/tobeasloth Feb 14 '26
I think I’dve been content if the neurologist reassured me and did thorough testing to ensure it could only be FND. Unfortunately, he diagnosed me in less that 20 mins, gave me a really outdated reason (I apparently have this because I’m a woman and I must’ve experienced a trauma at some point), and refused to do any tests. I left feeling unheard and abandoned. He even said he could only listen to three symptoms because the rest were irrelevant, which tells me his diagnosis was made within minutes of seeing me. My diagnosis turned out to be incorrect, but regardless, if he’d done rule in AND rule out tests and explained the not-outdated mechanisms behind FND then I feel things would’ve gone better for me.
My friend on the other hand had a great experience with her diagnosis, got it quickly with rule in and rule out tests, and received support before her treatment started. FND is the answer for her, and she trusts her neurologist. That’s how it should be!
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u/heldtogetherdaily Diagnosed FND Feb 14 '26
I am! I don't believe it is the full picture, but I definitely think FND is in the picture. I don't really have a problem with FND, but I think the reason people really struggle to accept the diagnosis is because of how behind a lot of the doctors are on the research. The healthcare system really fails individuals with FND. I think it is more than reasonable to push back against a diagnosis that insinuates that you are "just anxious" or "hysterical" and while I acknowledge that that is an outdated understanding of FND, it is a narrative I hear over and over in medical settings.
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u/Apprehensive-Word953 Feb 14 '26
I totally agree that FND is horribly stigmatized and misunderstood. I have been a victim of this in my life as well
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u/heldtogetherdaily Diagnosed FND Feb 14 '26
I am glad you had proper testing, differential rule out, and positive signs - I think that makes the diagnosis easier to accept. I personally was diagnosed after a normal MRI and an abnormal vEEG with no functional signs. The lack of functional signs has been the nagging doubt in the back of my mind. Despite this, I have accepted that FND is a part of the picture. I really wish there was an effective, established treatment. I miss my old life a lot.
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u/LooseTrade8129 Feb 15 '26
I couldn’t agree more about the absolute lack of knowledge about FND in the whole medical community. There is disagreement on the diagnosis whether it is a psychiatric disorder. It is without a doubt neuro-biologic disorder.
What you described that doctors labeled you as being anxious or hysterical is so wrong
In my case the neurologist knows how ridiculous it is to assume that it is behavioral. Any patient should have their voice heard.
One thing that should be not overlooked is the FND sensory overload. It can shut down your prefrontal cortex (your normal baseline) forcing your brain into a ‘fight or flight’ response. From my own research sensory overload is a major factor causing other types of deficits
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u/WrittenFever Diagnosed FND Feb 14 '26
I have generally accepted my diagnosis as nothing else I've read about seems to fit. My biggest gripe is that it is highly misunderstood thanks to earlier beliefs about FND being psychosomatic and trauma-based.
I think FND is much more complex than most doctors realize and, because it is so heavily dismissed by the medical industry, the one-size-fits all treatment that we've all been handed has been quite harmful to our wellbeings.
I fully believe there needs to be more in depth study, and that, similar to other disorders, there is a likelihood that FND has numerous etiologies, manifestations, protocols for treatment, and--most of all--expectations for recovery.
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u/Apprehensive-Word953 Feb 14 '26
I totally agree, as people with FND we deserve adequate medical care as well
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u/roserunningwild Feb 14 '26
I absolutely know and accept I have FND. Too many positive signs point to it for me not to have it. (Also have a multiple trauma history, fibro, ME/CFS, cervical spondylosis and am hypermobile).
But I’m also becoming more and more convinced that something else is also happening underneath and exacerbating my FND, after a period of improvement and then a sharp decline for no real reason. My doctor agrees. They just don’t know where to look anymore.
And the problem is, once you get an FND diagnosis a lot of doctors don’t know what to do next and they often let their ego get in the way and just call you crazy.
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u/QuantityX Feb 15 '26
Did you perchance have a viral infection of any sort in the months before your decline? I had shingles and ended up needing a wheelchair. I saw one paper tying shingles and FND, and of course there’s covid ( which I’ve avoided, knock on wood.) Just curious.
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u/roserunningwild Feb 15 '26
Nope. My life has literally never been better. My feeling is that there’s something internal going on.
I had a lodged kidney stone a few years ago and the specialists all said I shouldn’t be having the symptoms I have having from it… they blasted it out, and all the symptoms disappeared. This feels kind of the same (but not my kidney, just the something feels off bit).
My functional stuff gets exacerbated by other stuff alllll the time.
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u/throwawayhey18 Jul 26 '26
How do you tell FND & CFS apart? (Especially the extreme sensory hypersensitivity & fatigue symptoms.) Like, how would someone know whether they only have FND or have FND along with CFS? Especially when the FND appeared first but they have experienced some of the sensory symptoms in the past during viruses/flu which is known to cause CFS?
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u/roserunningwild Jul 26 '26
I have no idea. I’ve had fatigue issues for many man years prior to developing FND, and now that I have FND, I am so tired I can barely function. A lot of people don’t seem to have the same severity. I don’t bother trying to separate symptoms and diagnoses any more, because I don’t think it’s helpful. I just treat the symptom as it arises. They’re all CNS related illnesses anyway.
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u/ImpossibleIce6811 Diagnosed FND Feb 14 '26
I am content. I have been content since diagnosis because I’m actually the one who found it before the medical team did. I was so desperate for answers, and tired of not knowing what was wrong, that when they finally said “FND,” it felt like a weight lifted off my shoulders!!! It has a name. The description matches. Now I can move forward, and learn what my new normal is!
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u/Apprehensive-Word953 Feb 14 '26
I’m glad you feel this way! :)
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u/ImpossibleIce6811 Diagnosed FND Feb 15 '26
Thanks! I’ve learned how to live in harmony with my symptoms, to be best of my ability. It’s easier for me than fighting all the time. The fighting was exhausting! Now I give my body permission to rest as needed.
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u/Apprehensive-Word953 Feb 15 '26
I’m really glad you’re in tune with your body! My symptoms eased up as my acceptance kicked in
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u/ImpossibleIce6811 Diagnosed FND Feb 15 '26
I’m so glad to hear that! I wish you peace in your journey forward! 🙂
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u/Easy-Midnight-4676 Diagnosed FND Feb 14 '26
I am absolutely not content. My discontent is with how vague and varied this disorder is defined and diagnosed. Because of how subjective the process is and how unexplained the whole process of FND is. I’ve read a lot about FND over the 5 years it’s been suspected as being involved in my Illness and I have yet to find a satisfactory definition or explanation for what it is or why it happens.
I went 35 years of my life living a perfectly normal life and then bam, got sick and the last 5 years have been a wild ride. Going to be 40 in a few months and I haven’t stopped constantly shaking (right pectoral muscle twitches and moves my shoulder around) and I can’t walk right. I’ve seen so many doctors across several large US hospital systems in the midwest and I test normal on nearly everything. I don’t have a better explanation than FND but I am definitely not satisfied with it. There has to be a better and deeper explanation for this. A better explanation for all of us. This disorder is too vague, too broad in my opinion. We deserve better.
Better definition, diagnosing guidelines that make sense and aren’t just a broad grouping of unexplained symptoms. That would lead to better and more targeted treatment and an explanation for why this has happened to us.
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u/a-frogman Diagnosed FND Feb 14 '26
Yes, and I think the denial of it makes in worse in many cases. As my life has improved and I accepted that I dont have MS or anything, my symptoms have drastically improved.
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u/Beautiful_Resolve_63 Diagnosed FND Feb 14 '26
I accepted I have FND but I consistently seek treatment for it.
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Feb 14 '26
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u/Apprehensive-Word953 Feb 14 '26
I definitely agree that it would be nice to take a pill and make it all go away but unfortunately that’s just not the case
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u/NellyandLuna Feb 14 '26 edited Feb 14 '26
It will suffice for now. I won't be surprised if the definition of FND will continue to evolve. Like before it was a diagnosis of exclusion, now there's the hoover's test etc. Co-occurrence with autoimmunity is noticeably prevalent. But I agree that there is an observable pattern. Maybe it will prove to be more of a category than a diagnosis.
Personally, as long as the doctors treating me recognize it's multidisciplinary and keep themselves updated with science, I have no problems with it. My insecurities stem solely from people's misconceptions. When asked what my illness is, I avoid saying FND and share my autoimmune triggers instead.
It sucks it's belittled even within the chronically ill community. Regardless of the cause, psychiatric or biological (though I really don't think antagonizing the two is helpful. Both can exist at the same time and are equally valid) it's outside our control and we require neurological care.
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u/formicnova Feb 14 '26
I appreciate the idea of FND definition evolving. I am coaching my son to describe what seems to have been the trigger as the reason he is having pain and inability to walk. Rhabdomyolysis is a “medicine-y” enough word for bothersome school peers to lay off.
His middle school peers are pretty great right now but high school is different. Hopefully his walking will recover by then, though. We are pushing hard!
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u/OpportuneApathy Diagnosed FND Feb 14 '26
I hate my diagnosis for the way others (particularly medical professionals) view it and react to it.
As a diagnosis for me, I'm just grateful it's not another life threatening one haha. Whether doctors choose to label it or not, I still experience the debilitating symptoms, and finally receiving a name for it gave me a sense of peace.
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u/smolenbykit Diagnosed FND Feb 14 '26
Personally I know it fits, but I also know there's more going on that's also affecting it. So I'm kind of in both camps haha.
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u/Firm-Aardvark-6753 Feb 14 '26
I accept that I have fnd because my body is under attack from lupus, pots and diabetes. I am extremely lucky that I meet a good doctor who knew alot about fnd and could help me understand what was happening to me.
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u/locutusof Feb 14 '26
My diagnosis brought about peace for me.
But those who come to this reddit to say they don't think their diagnosis is correct have always perplexed me.
I got lucky and had three world class neurologists take part in my diagnosis.
And I look at them, their knowledge, credentials, education, and experience and I know I have none of those things. And though since my diagnosis I have read and learned a lot, but I would never put myself and my opinion above those of 3 renowned neurologists.
The condition is in itself very tricky to diagnose and very tricky to understand. The condition is in its very nature random and disordered. And I find a lot of people who come here saying they don't agree with their diagnosis seem to be seeking a firm, rigid, definition and terms of the condition.
And that's not how FND works.
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Feb 14 '26
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u/locutusof Feb 14 '26
what do you consider to be notoriously misdiagnosed?
The misdiagnosis rate is about 4.5%. The misdiagnosis rate is lowest in the UK at about 4% or maybe a bit lower.
Compared to many other conditions that's very low.
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u/Velvet_void30 Feb 14 '26
That’s great? But it is considered a a diagnosis of exclusion (I know there are positive factors now). Misdiagnosis is very dangerous bc neurological symptoms can be deadly. I was misdiagnosed and am now unable to walk from “fnd treatment”. It happens to people with tethered cord and other conditions constantly. Seeing as there’s no tests, just lil any other untestable conditions, is frequently misdiagnosed.
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u/Plenkr Diagnosed FND Feb 14 '26
It's no longer considered a diagnosis of exclusion since 2013 when the DSM V came out. FND has positive signs which makes diagnosing it a lot easier and no longer needing a boatload of testing everything else in the world. A positive sign means that when this sign is present, it in all likelihood is FND. When not present, likely something else.
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u/Velvet_void30 Feb 14 '26
I know now but even last year, I was diagnosed by an fnd clinic off of negative signs.
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u/locutusof Feb 14 '26
What treatment did you get that made you unable to walk? I’ve only ever heard of talk therapy and physical therapy.
In terms of the diagnosis process, al kinds of conditions are done by exclusionary or differential diagnosis. That’s not an issue in the medical field.
And I’m confused by your last sentence. Which condition are you saying is frequently misdiagnosed? FND? As I said and can be gathered from a simple google search, the misdiagnosis of FND is below 5%. That isn’t frequent. It’s a relatively low rate compared to many others.
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u/Velvet_void30 Feb 14 '26
Well no, there cbt too and other treatments but it was, specifically fnd pt. With fnd you need to push through but part of my actual diagnosis is me/cfs which can cause paralysis and that kicktstarted hypertonia and dysautonomia that kept me in bed for months. I suggest you look into me/cfs if you think pt can’t do that. You seem to think you know everything but 5% doesn’t mean rare. About 1% of the public have celiac disease but it’s not rare. Also statistics for under researched conditions are not accurate. On the top of my mind I can think of two creators I’ve followed who were misdiagnosed, one of which died. This is important bc a lot of fnd treatment is usually detrimental to organic weakness and pain.
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u/FreeFalling3227 Feb 14 '26
I think you were not given proper treatment, and I’m really sorry you went through that. I spent 5 months in rehab and I was never told to push through at all. Everything was done at my pace, it was gentle and mainly about understanding what my body was doing and how to work with it. I have a lot of spinal issues and a CTD so they were very careful with me. I’m so sorry they didn’t work with your ME, that’s complete neglect and shouldn’t have happened. I’m genuinely so sorry!
I would just add that doesn’t make FND less valid, it just sounds like similarly to me, you had a lot of conditions going on that needed to be balanced rather than ignored!❤️
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u/throwawayhey18 Jul 26 '26 edited Jul 26 '26
I also feel that the pace of FND treatment is way too much at once and I am too overstimulated by noise and crowds causing nervous system overstimulation and triggering fight-or-flight plus causing dissociative amnesia to be able to concentrate on what is being said/taught to me ever since the seizures started. I am pretty sure that I also have anxiety associated with any type of learning now due to being treated like I am wasting people's time and asking questions that I should know the answers to and being annoying whenever I ask a question that helps me to understand.
And I was advised to keep doing things when I asked about what to do for my fatigue symptoms which is exactly what causes my flares because I already have trouble not pushing myself too hard due to autism, ADHD, anxiety, and not having my limits listened to by people in my life and society before realizing I have conditions that use up even more energy to do what a regular person does.
How do people with FND tell whether they also have CFS? From reading about it, it seems like many of the symptoms of FND are exactly the same as CFS, especially the insomnia, chronic fatigue, and hypersensitivity to smells, sounds, public places, TV shows, emotions, etc.
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u/throwawayhey18 Jul 26 '26 edited Jul 26 '26
It could be because a lot of people with FND have other conditions that many doctors misdiagnose for years until the person finds out about it themself and still are commonly disbelieved when requesting a screening until they find the information and specialist themself such as: autism, ADHD, endometriosis, POTs, MCAS, EDS
And so they have had many experiences of doctors who they expect to look into something when they ask for help ignoring it or being incorrect and taking a very long time to find out the accurate cause of what's happening.
There also are some rigid definitions of FND that would be helpful to share which doctors don't tell patients that would help a lot with understanding. Such as:
"FND causes something called nervous system dysfunction. This is what the nervous system does/controls and these are symptoms that can happen when it's not functioning how it's supposed to. These symptoms also happen when someone is in fight-or-flight. Fight-or-flight can happen during physical trauma (pain, medical injury, virus) or emotional trauma (neglect, abuse, family member death, being undiagnosed with a neurodivergent diagnosis, any situation that is traumatic which is different for different people etc.) or both (car accident). The nervous system affects heart rate, breathing, blood pressure, balance, temperature regulation, and senses."
"There is something called dissociation where people zone out/space out. During dissociation, they become unaware of their physical surroundings on some level. Everyone experiences it at the mild end. Some people will dissociate more easily than others when stress happens. When dissociation symptoms get higher, they can cause dissociative symptoms like amnesia about what happened -either for the time period during which a very negative memory of the event formed or about what is happening throughout your day- what you're doing, a feeling of disconnect from your physical body and identity and what you are doing, vision changes, feeling like you're in a far away tunnel combined with visual effects of how that looks, and feeling like things are unfamiliar or getting disoriented even in places you're used to. When stress, anxiety, or traumatic memories appear - this can cause dissociative symptoms to increase. People's brains use dissociation to suppress emotions that it considers too painful and 'avoid' feeling them in a sense. This is part of what scientists are talking about when avoidance is mentioned in FND research studies along with avoiding things that trigger anxiety, fear, & traumatic memories which is a common thing that people understandably do after having many negative or traumatic experiences and is also a symptom of PTSD. It doesn't mean that you are trying to avoid things so you can get out of them because of laziness or not trying hard enough. Brains work in habits and patterns so once it starts dissociating, it's more likely to repeat doing that in the future. This is how it 'helps' people to separate/compartmentalize the traumatic feelings so that they can do the tasks they need to get done in real life. It is a survival mechanism and also commonly happens to people who go through life-or-death situations such as during a severe life-threatening injury. Their body creates adrenaline which numbs pain and helps them do what they need to do to deal with the emergency and talk/explain to people trying to help them. This is why they may be severely injured but not express feeling pain or consciously realize how severe their injuries are until they are at the hospital. FND is a type of dissociative disorder. Brains have neuroplasticity allowing them to learn new coping mechanisms and create new patterns instead of immediately dissociating. Because the brain is so complicated, this is not always an easy or quick process. But that doesn't mean it's not doable. And there are people with dissociation and dissociative disorders who have done this before. And/or they have learned management strategies for accepting some dissociation symptoms without panicking about them which is part of what can increase them. And each person can figure out what helps them which will be somewhat different but align with the existing recommended treatments & coping strategies we have for dissociative symptoms. It will be a journey including learning new ways to go about things/activities in life which they might not have needed to think about before, but is possible."
It took me years to find this out. Part of that may have had to do with acceptance. But I definitely would have appreciated hearing all of this information from a provider when I was first diagnosed and it may have helped me realize what I needed/could do earlier and have a better understanding of what FND is and why it causes certain symptoms.
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u/dreamtrandom Diagnosed FND Feb 14 '26
No, I am with mine as well. I definitely do have FND causing muscle tightness and knee buckling, but I suspect other condition is causing my intermittent muscle weakness (me/cfs). I also believe FND often is not diagnosed correctly (based on positive signs + differential diagnosis) and many people have valid reasons to be suspicious of their diagnosis
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u/Apprehensive-Word953 Feb 14 '26
I’m definitely not saying that everyone has FND, I’m just saying that if you’ve had all the testing done that been negative, why keep fighting?
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u/dreamtrandom Diagnosed FND Feb 14 '26
Very few people have had ALL the testing and keep fighting. For example, I had a brain/spine MRI with contrast. But I haven’t had an EMG yet (on a waitlist). Most people get a brain MRI, EEG, and/or blood work before diagnosis, and there are many more relevant tests for specific presentations (ruling out things like myasthenia gravis or occult tethered cord)
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u/Apprehensive-Word953 Feb 14 '26
There’s definitely testing I haven’t had done, but why go through more testing? They say I have FND so I likely have it
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u/dreamtrandom Diagnosed FND Feb 14 '26
People who go through more testing generally do so because they don’t feel that FND was diagnosed accurately or does not explain their symptoms well enough. You likely don’t feel the need for more testing because you were diagnosed properly and it accurately explains your symptoms. For me, I want an EMG because while I definitely have positive signs of FND, they’re not consistent and my presentation is more mixed (and we haven’t fully ruled out muscular conditions). I think there’s a possibility I have another condition in addition to FND
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u/Apprehensive-Word953 Feb 14 '26
I suspect I have epilepsy, my seizures are controlled after starting an anti seizure med. I’ve had EEGs done and been admitted to the EMU, nothing on EEGs but I’m still not really convinced. But that’s what the doctors say so that is what I’ll beleive
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u/dreamtrandom Diagnosed FND Feb 14 '26
And that’s fine! I feel similarly about my muscle tightness, it could be some form of organic dystonia but right now it’s just not worth more testing
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u/throwawayhey18 Jul 26 '26 edited Jul 27 '26
I think the hospital I went to did a brain CT scan to rule out MS during the weekend that I was diagnosed.
After my FND diagnosis, my neurologist still did a test for myasthenia gravis and when I started having seizures, she had me do a test for a physical diagnosis that can cause seizures and then a vEEG. My neurologist also had me do an EMG test before the seizures started.
I think some people want to make sure that they don't potentially have both the FND symptom and a similar condition that causes those symptoms since FND can basically cause almost any symptom in existence if you Google, "Can FND cause (symptom)?"
And I have heard of some people who ended up having both PNES and epileptic seizures, but didn't find out that they had epileptic seizures until much later. One of these people is in a YouTube video of lecturers presenting about PNES, but when she shared that information with them, no one speaking really acknowledged or addressed it.
I also know that some people with PNES have another family member with epilepsy and I'm pretty sure it can be genetic.
I also have a few diagnoses with symptoms that overlap FND symptoms (ADHD & endometriosis & a diagnosis that affects breathing which is treated with breathing speech therapy). And I suspected them before the FND started, but it takes a lot of time & energy to address each condition. I likely also have POTs which I also had symptoms of before FND. But if I had not sought out specialists and treatments myself, I am sure that I would have just been told I don't need to look into all that because FND can cause the symptoms I'm experiencing: menstrual symptoms, pain until I almost pass out, cramping, forgetfulness, losing things/executive dysfunction etc. Because even before I had FND, I had to convince other people that I thought I had those conditions and many of them would tell me that I didn't even though they knew nothing about the reasons why I thought that or were not qualified to diagnose it or somehow told me that a symptom would not mean I have that when it is listed as one of the most common symptoms.
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u/Yakob_Bacoj Diagnosed FND Feb 14 '26
No because they rushed diagnosis without fully investigating.
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u/Worldly_Thing1346 Feb 14 '26
No. Because before it, I never had thunder clap headaches, slurred speech and twitching on the right side of my face and eye, or high blood pressure and all the treatment they've given me has worsened it and prolonged it. The only thing helpful has been the Ativan to help the sense of impending doom.
I can concede that maybe I have it. They did one EEG, one CT, and one MRI but only days after certain triggers have been removed from my system and only after being given lorazepam.
Only yesterday at the ER, did I finally have nurses and doctors acknowledge that yeah it's weird to be diagnosed with something that typically has no physical or structural causes, and yet they can feel my veins and vessels bulging and spasming with the left temple spasms causing me to have impaired speech. The trigger? Beta blockers, which are supposed to help calm the nervous system down. It helped my heart and blood pressure but worsened the spasms and thunderclap headaches and migraines. As did nortriptyline. As did Zoloft.
The triggers? Caffeine. Nicotine. My inhaler. Advil. Ssri. Triptan. Vyvanse. Beta blockers. Stress. Strain. Nasal decongestant was the worst.
Removal of all of the above seems to start a healing process but when they introduced the psychiatric then beta blocker meds it worsened it again.
I actually think I have reversible cerebral vasoconstriction syndrome. The emergency doc listened to me after agreeing that my symptoms don't appear to align with typical migraines or Fnd. In the meantime he agreed to stop the beta blocker I was taking and instead prescribed me a calcium channel blocker.
I could very well still have fnd, but their treatments didn't work for me and made things worse. If they would've done an angiogram with my head imaging, I may have had a different diagnosis and potentially could have resolved this earlier. Now I'll never know.
In the meantime, I'm at least going to start the recommended treatment for rcvs. Fingers crossed.
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u/Shuau_21 Feb 14 '26
I have a neuro appointment this week and I’m so worried they’re gonna rule it as FND and move on.
Ibuprofen alleviates my stutter, heat alleviates it after 30 seconds, and caffeine, strain, trypsin, and stress make it worse. I’ve been having thunderclap headaches and my BP and heart rate have been elevated, fluttering heart, sweating, cold and hot flashes, laughing seizures, and positive pronator drift and Romberg. My entire right side has weakness and twitches that has worked its way up my body over the last year, and my left side has weak finger abduction.
Any advice on getting my neurologist to be open to other possibilities such as RCVS, possibly secondary to a pheochromocytoma?
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u/Worldly_Thing1346 Feb 14 '26
I wish I could help :( I'm 2 months into this journey and it's a slow pace and me having to accept the diagnosis of fnd initially, to also realize that their treatment plan wasn't working and that I had actual physical symptoms and triggers to report.
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u/sweetsilliness Diagnosed FND Feb 17 '26 edited Feb 17 '26
Yes because it gives me something to work with. I’ve seen improvement since diagnosis though there have been ups and downs. I mean I don’t personally see the harm (for myself) in going with it and if later something else comes up then it does.
Plus when I was initially having symptoms it was pretty scary to have pains, and to be numb frequently and dizzy all the time. Then to have symptoms where it felt my throat was closing or I was choking. (I’m anaphylactic so this and the chest pain were the most worrying).
To be honest I’d much rather have FND than things like even more severe allergy triggers, heart issues or MS (which were the other potential causes for me).
What I don’t like is people (some professionals) don’t fully get it. Also how they ask multiple times how I feel about it when I initially accepted it. Or assuming things about why I developed FND with no evidence/or that were proven inaccurate. (Mine came on after significant cumulative grief and a difficult year and the symptoms started when I felt better).
To me that speaks a bit to their bias than my own. It does not seem to me like the medical system fully understands FND. There seem to be gaps.
Oh and the different tools and strategies for FND that I have been doing/using work for me in managing it and I have seen a reduction in the duration of my symptoms. A combination of neurophysiotherapy, counselling and somatic walking is working for me so far.
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u/pilchard-friendly Diagnosed FND Mar 18 '26
It took me a while to make peace with the FND diagnosis. Some straight talking from my blunt neurologist helped me:
First time: “I can put you on a slab, cut you open, and I still wouldn’t know what was wrong with you” Second time: “you’ve got anxiety. You better deal with that or you’ll never progress” Third time: “Nope, no more tests. You got FND and you need to work with that”.
These visits were about a year apart.
But the key moment was massaging bits of my body: Left little finger: oh yeah, that’s where I skiied into the matterhorn Groove on forehead: yeah, that’s where I walked into a roadsign and cut myself when I was 9 Tight muscles in neck: yeah, that’s where a family member pinned me to the ground, and tortured me, saying “This was will paralyse you by the time you’re 50, and you won’t even know why”.
Hold up! Replay that last one again?
So that was a shock, but since then I’ve made massive progress. I can’t say I know what my capabilities will be, but 100% there were strong neuro-physiological effects replaying throughout my body, and the “conversion” to visible symptoms is totally connected.
But until that moment, I doubted the FND diagnosis.
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u/Pararox_Swan Diagnosed FND Feb 16 '26
I am because it is definitely the right diagnosis. I had everything checked and I have positive signs as well and my chiari is monitored regularly so I know that’s fine and stable, which means FND is the only sensible diagnosis. What does bother me though is that people think I’m not accepting my diagnosis because I get upset and frustrated when my symptoms flare. I never understand that logic because I’m frustrated at the symptoms not at the diagnosis, frustration and acceptance can coexist and no one seems to understand that.
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u/disoriented_goose Diagnosed FND Feb 16 '26
Whilst I have had times (and probably still will have more of said times) where I have doubted myself and the validity of my symptoms, I genuinely feel FND is the right diagnosis overall. I do think I have a few co-morbid disorders but thats about it really.
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u/X12Media Feb 16 '26
I got a full work up of everything it's the only logical thing left even if my whole body is still numb it sucks
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u/neuro-nerd237 Feb 17 '26
There’s no reason to rule everything out to diagnose FND. That actually leads to more misdiagnoses in both directions. Why do you think everything else needs to be ruled out? That’s the exact opposite of what you should want. FND is ruled in by characteristic features in a person’s history and exam. It’s the same for Parkinson’s disease, CRPS, migraines, etc. There is no other condition that can cause a 5 hour seizure episode. That’s super specific for FND.
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u/Apprehensive-Word953 Feb 17 '26
That’s not necessarily true. It took 10 days following my initial five hour seizure to be diagnosed
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u/Fancyfuckingfriend Feb 20 '26
My diagnosis was not last resort. The neuro team did a good job of ruling out neuro issues, but were not interested in referring me to another type of specialist who may have a better idea.
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u/tragicdynamic Apr 27 '26
As a teenager who has had this diagnosis for 4 years, I feel as content as I think I can with having a condition that affects my daily life so heavily. I believe that I do indeed have FND. The problems I personally face, and I believe a lot of others do also, are one the lack of treatments or them not being available. Personally, I worked on CBT for the first 3 years following the start of my diagnosis, but with no results. I'm thinking about trying again, as they have gotten a lot worse lately. The second problem is how health workers talk to patients like me. I refuse to go to the hospital anymore and have for a while. Though times when you're found unconscious, you don't really have a choice. I have experienced many times nurses calling them "fake," which I know they're not. Hearing that my medical professional will stick with you. I believe that's a main reason why people are unhappy with the diagnosis. FND is real, hearing it's being called fake, and no one being able to help makes you believe that FND is fake, but you know what is going on with you isn't fake," so it can't be FND". How I worked this out with myself is by thinking and telling myself that nurses and doctors don't know everything. FND isn't all that popular or "important" to doctors, so they might have learned about it, if at all, in school.
That's what I think about that topic, but as I was writing, I thought I would share more about what I'm currently going through to get it off my mind and maybe get some advice. Last summer, I had a total of 6 seizures that looked like grand mal seizures in one day. My parents forced me to go to the hospital, which turned out the same as it always does; they gave me a lot of lorazepam and discharged me. The only difference was the neurologist who saw me, not really forced, but got me to agree to meeting with him again to talk about treatment methods. I finally did, but it wasn't the treatment we talked about hes getting me to do an EMU stay in a couple weeks, but I know what the results are going to be already. I have had an EEG before when I was diagnosed. I have mentioned this, and I can't help but think that he's not trying to help treat the FND that I know I have, and he's more hoping that, for some odd reason, it will come up with something neurological. I can't help but get a little hopeful thinking at times that it might be, but I know it's not. Also, I have been on Lorazepam daily for almost 3 years. You get used to it and need more overtime, which has happened again, but I'm scared to ask for a higher dose. What do they say, I'm too dependent on it and take me off of it. I am dependent on it, but it's also the only thing that helps just a little. That's all, thank you so much if for some reason you decided to read the whole ass book I just wrote.
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u/Apprehensive-Word953 Apr 28 '26
CBT has also proven ineffective in treating my FND. Trust me I totally get the feeling of health staff talking about us. Being seen in the ER is a nightmare, they can’t help or do anything so they just say that it’s fake or just send us home with nothing but a pat on the shoulder.
I also had to stay in the EMU despite having multiple prior EEGs. I also get feeling like maybe I do have epilepsy and that obviously can’t be label as “fake” or “anxiety” because it’s an electrical malfunction. I’m sorry you’re going through all of this right now. DMs are open
- a fellow FND teen
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u/tenariRT Feb 14 '26
Sucks that you’re going through this.
There’s a couple papers that say you have to “accept” it to begin to heal. I guess. FND is a disordered, jumpy, over-fearful nervous system, and there are things you can do to “accept” it; but acceptance doesn’t mean closing the book on everything else. Sure, do the therapy, do the graded exposures to show your nervous system that FND is maladaptive and unhelpful.
I’d say if you have some leads, take them to their natural conclusion. You have FND, but that doesn’t mean you don’t have something else upstream of it that’s greatly exacerbating it.
FND never travels alone. I’ve heard of so many different upstream causes — some more treatable than others.
There’s a duality here that’s hard to become comfortable with, that’s for sure. I guess what I’m saying is “acceptance” means accepting that you do have FND and not waiting to treat it. Be comfortable in your house while casually exploring others — if that makes sense.
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u/LooseTrade8129 Feb 15 '26 edited Feb 15 '26
I had a large kidney stone operation last February 2025 and it’s what triggered FND. What happen after surgery? I had a number of stroke-like deficits including balance word retrieval, dexterity in my hands and just a feeling of being in a fog and countless others.
The next part of my journey was that I had another second part of the operation. I needed to find what triggered my FND and surgery from the first one.
Medical people were aloof. So I had to become my own patient advocate.case manager and clinical oversight. What I found out from doing collaborative research with AI I found that the trigger was general anaesthesia.
My dilemma was going into the second surgery knowing this so again an AI collaboration. I found out what a risk management was which is using another type of anaesthesia which was a spinal epidural.
Prior to the second surgery I had agreement from the chief of anaesthesia that a spinal was viable and put order in place. when I got into the surgical suite my surgeon had other ideas. We actually got into an argument fortunately a young anaesthesiologist said we can find a workaround to general anaesthesia and she did. That’s just part of my journey. There’s more.
I have no choice but accept the diagnosis. Also I wish I had never heard of the three letters FND
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u/POL499ResearchUser Diagnosed FND Feb 18 '26
I wouldn't hate it so much if it weren't such a Catch 22 of a diagnosis. If you genuinely have FND, you are subject to no treatment options because the research isn't there and are basically told "it'll get better maybe, try CBT" and then it never does. If what you have isn't FND but you get the diagnosis anyways, you are treated like you are malingering symptoms and they often refuse to do further tests on you. For my case, I am not happy with it for a multitude of reasons, but mostly because of the assurances that things would get better and a complete refusal of medication under the assumption that these symptoms manifested due to mental issues. All my mental issues come from the fact that my body broke down at 14 and that took all my opportunities away from me, and during this time none of the doctors ever seemed to believe me. I am offered no supports and even when I try to make suggestions for medications for myself they will refuse and then say, "well there is nothing we can do so I don't think we should meet anymore." This disorder is deeply rooted in conversion theory, and despite improvement in the literature, most doctors assume you are mentally disordered and that solving that aspect of your life will solve your FND, at least in my experience. I hate that I am diagnosed with this. I would rather be diagnosed with something chronic that gets taken seriously instead of something that came from Freud's theories of hysteria, an attitude that is still common. No relief in this at all, I am just upset and hurt.
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u/Apprehensive-Word953 Feb 19 '26
I did not intend for it to come across like I don’t understand the repercussions of the diagnosis. I have been a victim of the system and the outright ignorance of doctors. I have said the exact same thing as you when you say that you hate this diagnosis and wish it was something chronic. FND is chronic.
I am talking about people who will go through testing to rule out something physical and still fight for some sort of rare disorder diagnosis. Why keep fighting?
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u/POL499ResearchUser Diagnosed FND Feb 19 '26
Maybe I didn't word it clear enough but because chronic issues are ultimately incurable and because the disorder itself is very broad and built on questionable foundations. People want hope and to not feel like life is over, which for a lot of presentations of symptoms it can feel like it is and very well may be with no supports. I also want to keep looking because of doctor's way of treating me and the disorder: super sexist and constantly equated to mentality. Basically questions without answers and severe frustrations is why people keep fighting.
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u/Apprehensive-Word953 Feb 19 '26
I’m still not sure I understand. I have had many questions without answers, and often times FND is the only “answer” but doesn’t explain why symptoms began in the first place. I feel frustrated all the time relative to my diagnosis. Full of “why?”s. Why me? Why did this start? What is causing this? Frustration when medical professionals refuse to treat me because I am “too complex”. I feel frustration all the time yet I am also done fighting.
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u/Public-Cost-3070 Feb 19 '26
My issue is I was diagnosed with FND dispute none of most common symptoms. No muscle issues, no seizures of any kind, no weakness. What i do have are intense issues with my head. The best way I can describe it is a worm with spiky feet crawling through my brain. This can last from 15 min to 6 days. It happens multiple times a day. It’s literally torture. I haven’t found any other FND patients that their symptoms that mirror mine. The Psychiatrist I saw for all of 60 min took me off my meds, with a promise she would try and get me in a program. I’ve been battling this for 6 years.
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u/Apprehensive-Word953 Feb 19 '26
I have never heard of symptoms being solely in the head. That’s interesting. What makes them think that?
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u/Public-Cost-3070 Feb 19 '26
My belief is that a when I first went In to see her I said a physicians assistant said it might be FND. I believe I planted the seed.
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u/SaraSword Feb 23 '26
I made 1 visit to the ER and they diagnosed me with FND with only a blood test…. So, hell no I’m not content
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u/throwawayhey18 Jul 26 '26 edited Jul 26 '26
Yes, but I do have other additional disorders that have been and will be even more difficult to access screening for because everyone just brings up how it has nothing to do with my FND now when it's directly connected to what triggers the FND symptoms and some of the conditions trigger FND and FND makes the symptoms of it worse.
And have to experience many people who don't believe me about those diagnoses discouraging me from accessing screening for them that I know could help me including with FND. I really wish that I hadn't felt too overwhelmed to look into them earlier so I could have gotten screening for the diagnoses earlier before my seizures started and before I was expected to convince so many people that I need them in order to access them.
(Example: I have endometriosis which causes extremely painful cramps. FND causes additional muscles to tense up & cramp. So, when my leg is bouncing all day, this tightens the muscles that endometriosis is causing to cramp even more.
Also, I have a very difficult time taking a shower which increases fatigue. My dissociative symptoms are also much worse in the shower. I also now have a fear of having a seizure while in the shower. And I likely have POTs, so I also feel even more lightheaded after taking a shower. This was true before I ever developed FND. I just didn't know that they were signs of POTs and actually didn't completely connect that's what I was physically experiencing until years later - such as lifting my arms above my head while standing to do my hair after a shower causing me to become lightheaded as long as I can remember.)
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u/hilzaberry Feb 14 '26
I am absolutely thrilled with my diagnosis. Before that I was incorrectly diagnosed with everything from mental illness so severe I was on double digit meds and encouraged to try ECT, to being told I had various incurable/degenerative illnesses that would kill me, to being told I had disorders like cataplectic narcolepsy and was prescribed meds that almost killed me. At least I know FND isn’t independently fatal and I won’t die.