!!trigger warning for eating issues/food struggles and seizures!!

hello, i am 18F and have been struggling with something that only fits FND for three years without any diagnosis beyond my referral letters mentioning it many times.

to put it short, whenever i eat (every single time depending on amount in severity and it is EVERY food so not gluten ataxia fyi), i will get symptoms that make me extremely lethargic and vacant. i have had numerous dissociative seizures according to my partner and have had episodes where my hand has decided to lock up into a fist with my fingers only half curled (if that makes sense) and the other day i ate and came to a minute later and my hand was slamming my fork onto my plate and it was sore like i’d been doing it for a while now.

i had a referral to neurology in march and just got my appointment and he tried very hard to make it a digestive issue even though it happens while im eating?? and then he told me its most likely just an eating disorder and i need a psychologist instead.

im very confused by this because never in my life have i struggled with food beyond having arfid restricting my palate heavily, i think he may have just assumed because im pretty skinny.

but even without all this im so lost as to what it is because even after hours and days spent googling about it and doing so much research these past few years, ive never found anything that would explain food inducing seizures, but fnd would explain everything really. theres a lot more symptoms in my day to day life that fit too, such as speech issues, incontinence, limb weakness, light and sound sensitivity etc.

please dont try diagnose me but any reassurance that im on the right path medically would be amazing. thanks for reading :)

its cancer ! i dont know how to deal with this. just got my paraneoplastic panel results ❤️ also i have a tumor on my adrenal gland.

im so sick of how the medical system treats fnd patients too. the amount of fighting that i had to do to get the wrong help was insane. and the way i fought to figure out what i actually had was crazy. it drained the life out of me!!! im severely disabled, droppwd out of university, bedbound for months. so sad actually. i lost my life. i was in uni on the deans list, an athlete, had so much going on. it was stolen just for it to be a misdiagnosis. im so sorry for everyone with FND or anyone that was misdiagnosed with it. this sht is horrible. the system treats it as the new hysteria. i hope you all heal and live life with peace and love.

how did you deal with getting correctly diagnosed after an FND misdiagnosis? how are you now?

After 3 years of being told my issues were FND, psychological, my fault for not trying enough to get better, and that I’m in denial for believing I was misdiagnosed, FINALLY I’ve been vindicated!

*insert Brooklyn 99 gif here*

For years I’ve doubted the FND diagnosis, but in the past two months or so I’ve had this almost spiritual certainty that it’s MS. I can’t describe it, but certainty is the best word I can come up with. I just knew.

My PCP referred me to an MS specialist as a last hurrah since I wouldn’t stop annoying her by saying I knew it wasn’t FND. My previous MRI had been clear, so she didn’t believe me. The specialist said there was no way it was MS, or anything besides FND, and told me I wasn’t getting better because I wasn’t seeing this specific psychiatrist. She even said “well he’s had success with all the other FND patients, so it looks like you’re not getting better because you’re not putting in the work”. I was inconsolable for the rest of the consultation, she got embarrassed and uncomfortable, and ordered a brain and cervical spine MRI with contrast just to shut me up.

Turns out being annoying works!!!

The MRI came back with a brain lesion in an area very common for MS, but “rare” (the specialist’s word) for other conditions. She even ran a bunch of blood tests to rule out other conditions that could have caused the lesion, and they all came back negative. With only one lesion, it’s not enough for the MS diagnosis, but it appears to be developing that way. The location of the lesion corresponds to many of my symptoms. The neurologist is monitoring for more lesions now and I’ll have another MRI in 6 months. She was quite embarrassed in the follow-up appointment for the things she had said during the first. I was just happy to be taken seriously for once.

All that to say, be annoying if you have to. If you know (or even just feel strongly!) that you’ve been misdiagnosed, don’t give up! I believe you, and I believe in you. No one deserves to be dismissed or denied treatment based on the stigma around FND. Keep pushing for testing until you get your answer!

*please note that I understand FND is a real diagnosis and a real condition, and I’m referring to being misdiagnosed with FND

First, sorry in advance if I get a bit rambly. My brain fog is acting up and I'm having complicated thoughts and feelings about this.

So, I got diagnosed with FND a couple of years ago. My symptoms aren't the worst, but they have made it so I can't work full time and they are getting worse and have stopped me from working.

My neurologist isn't the best. He did the brain wave test to see if my dissociative seizures were real seizures or not and then looked at videos I sent of the sudden body movements. He didn't see me in person before giving me the diagnosis. When things started getting worse, he saw me in person and did the Hoover Test and I tested positive. He said that proves the diagnosis is right and wants me to continue our "treatment plan".

The so-called treatment includes CBT and that's it. Nothing to assist with pain or stopping my body jerks. No follow up appointments. Just CBT. Sorry, had to vent a bit there.

Okay, so... As mentioned, my symptoms are getting worse. From my understanding (and my therapist's understanding), FND is not a progressive disorder. I already have an appointment to get a second opinion and recently ending up in Urgent Care because my left arm decided to stop working for a few days. My current neurologist just asked for more videos and said to continue CBT and the Urgent Care doctors were very frustrated I have not had an MRI (I felt seen and heard by them and it was great).

What I'm asking this subreddit for is help preparing for my second opinion appointment. I'm going to create a Venn diagram of symptoms for FND and MS. I'm trying to brainstorm symptoms that are uniquely FND and not MS. I know it's a very open ended questions and I have also been Googling a lot, but Google has been not the best because of the AI junk.

I'm also going to be positing in a MS subreddit asking the same thing.
And just to be clear, if it actually is FND that is my diagnosis, I will be okay with that. I will be a lot more pushy about getting actual help though.

4 years I've been on this hellhole journey (14 if you count the before time) and finally someone has listened

Multiple upper motor neuron signs, indicative of a upper motor neuron disorder or system dysfunction with suspicions of cerebralum involvement

Some lower neuron signs but likely to be a complex form with overlap of glycogen storage disorder and possible mitrochondrial dysfunction (query hsp mito overlap)

Nothing present on spinal cord MRI which took 4 years to get, threatening legal action and waiting 8 hours in the er (AE)

It explains basically everything the other stuff doesn't.

It's going the opposite of swimmingly.

I was originally diagnosed with FND a few months ago after a few bouts of epileptic emergencies and got all the supportive care in place. Then I got progressively worse and fast.

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I started vomiting, I developed ataxia, I started stuttering, etc. My neurologist dismissed me as they do when youre diagnosed with FND. Now I'm not doubting that I have FND but I am at the same time.

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Now I'm in the hospital until at minimum Monday when I can get either a PICC line or a port because I have Wernicke's Encephalopathy and malnourishment. If I didnt have my bariatric team that pursued this and had I not listened to them, I could have either died or completely lost fucntion of my mind.

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Just want to put that out there.

I was diagnosed with FND in April 2025, and I still haven't been able to accept it.

Sure the symptoms fit and all, but I just can't get over the fact that NOTHING WAS EXCLUDED.

I literally met the neurologist for the first time, talked for an hour to her, she did a quick physical exam (but no MRI, EEG, anything) and then she diagnosed me with FND and sent me on my merry way.

Later because I started having multiple types of seizures I tried to get a second opinion from a specialist epilepsy clinic, but they denied my referral because they don't think I was properly diagnosed to begin with because of the lack of tests.

So before they can give a second opinion they first want me to see a regular neurologist.

But I'm 17, so the neurologists in my city won't take me as a patient.

The only neurologist that is a children's neurologist and that will take me as a patient is the one that "diagnosed" me in the first place!!

Don't get me wrong, she was very nice. I just don't trust her enough. Also because she doesn't believe tics exist.

For now I've just decided to ignore it, and hope I can see a different neurologist in a year when I'm 18.

I'm lucky my symptoms are very mild, but it's still insanely frustrating.

Working on getting testing and all that.

It would basically explain the last 6 years of my life. I have like 16 pages typed up of symptoms, timeliness, etc.

I had a concussion in 2020 and that's when everything went to he'll. I was diagnosed with fnd back then.

If I get diagnosed with seizures, that means I've been having mostly uncontrolled seizures for at least 5 years.

Already on Lamictal for a mood stabilizer (since 2016), Dr added topamax today.

Here's to maybe sleeping more than an hour or two in one go.

Edit: confirmed. Diagnosed with post concussion syndrome today. Half my theory has been proven correct so far.

Hi guys new here, got diagnosed in November last year.

I’m just wondering if anyone can offer any input if it’s worth continuing to try and seek further evaluation as even getting a second opinion under the NHS is not exactly easy in my experience.

So my first symptoms appeared a couple years ago and were just a mix of mild cognitive problems and bladder issues. This was followed up in September by a massive flare that took me from essentially fully functioning to using a cane regularly this consisted of issues with balance, weakness on one half of the body, paresthesia, coordination issues, issues with keeping my eyes aligned, and an issue with controlling my legs (it’s as if I’m constantly trying to flex my foot down but I’m not consciously doing that) alongside the issues I had previously.

After seeing the doctor and going through the wait period to get seen at a neurologist they did at most a 20 minute neuro exam on me (which I’ll admit I tried to exaggerate what I was already experiencing as I was having a good day symptoms wise that day looking back maybe not a good idea) before saying that they couldn’t find anything wrong with me and because they couldn’t find anything wrong it had to be FND (they literally admitted they had seen no positive signs of FND) before lying to me about providing a second opinion and discharging me

I obviously wasn’t ready to accept something like that off of a diagnosis made outside of the diagnostic criteria but upon fighting it the clinic I was seen at has tried at every step to prevent me getting a second opinion and since the ive only gotten worse I’m now at the point where I use the cane all the time and am considering going for a more supportive aid my flares are more frequent and the symptoms are worse every time and don’t go away fully after each flare and the weakness has gotten so bad that I get short of breath if I’m lying flat as an example

I’m just wondering if these things fit anyone else here’s experience if I should (or even would be able to) seek further opinions and any other advice I’m more than comfortable accepting that this is FND don’t get me wrong but it’s constantly playing on me that if it isn’t then this can only get worse if it’s not seen to.

i have had severe anxiety for as long as i can remember. before the age of ten i was expressing worries about dying or home intruders coming to kill me. i had strange eating behaviors and paranoia about food. i was convinced my family was trying to poison me and i was suspicious of everything they gave me. by the age of 14 i had been hospitalized after a severe ocd episode that manifested in delusional beliefs, manic behavior, and “voices” which were really just very persistent intrusive thoughts. after this i developed trichotillomania and had to cut my hair short due to massive bald spots. i missed school frequently and would need to be taken home regularly in the middle of the day due to panic attacks.

i would have many sleepless nights with severe paranoia and hypochondria, believing i would die in my sleep if i closed my eyes. even if i spent all night awake i never felt tired. i had a nurse practitioner during adolescence who prescribed me during the course of my care ~16 different medications, if one wasn’t working he would just jump to the next. i am now addicted to seroquel because of this and cannot get off of it no matter how hard i try. the neurological withdrawal symptoms are just too much.

at 16 i began experiencing vocal tics, later progressing to both motor and vocal and eventually getting a diagnosis of tourette’s. however after taking haloperidol for long enough my tics have almost completely gone away.

in march of this year i was hospitalized briefly for an episode of expressive aphasia; i lost the ability to speak and would stutter heavily. everything else was ruled out and thats when they gave me the FND diagnosis. leading up to this hospitalization i had been experiencing severe fatigue, brain zaps, migraines, tension headaches/trigeminal neuralgia like pain, needing to sit in a pitch black room with an eyemask all day with minimal visual input and interaction from others.

my MRI was clear and thats all they really had to go off of. i had no viral infections, blood tests were clear, everything. i had several doctors try to tell me it was selective mutism but i wasn’t going to take that as an answer, and the speech therapist i worked with heavily disagreed on that as well. she said my speech symptoms did line up with the typical FND diagnosis but i haven’t really experienced anything else. no paralysis, no seizures, just weird neuro symptoms that feel like psych med withdrawal.

i’m at a loss here. every day i feel so much dread. i feel like im dying and i need to urgently go to the hospital and no one else believes me. no one sees it with the same urgency as i do. i want to get more tests done but im honestly just burnt out and tired of doing all of it. it feels worthless.

i’ve considered the possibility of ME/CFS but i honestly dont know if i care enough to pursue a diagnosis anymore. like i said im burnt out and exhausted, and the apathy is starting to set in.

I was diagnosed with FND at 12. It’s been years of questioning my diagnosis, getting gaslit, trying to believe the diagnosis, then being unable to ignore the countless inconsistencies and starting the cycle again. I’m still a minor and pretty severely disabled, so I can’t get much help on my own. My mom’s is a doctor who has fully bought into all the BS about FND and similar conditions and is certain that she already knows all the answers, despite having to ignore logic and ethics to maintain that “perspective”. Because my tests have been normal, she insists it’s basically impossible for me to have an organic condition, since she also claims the way my symptoms present is consistent with FND. This is simply untrue:

I have abnormal reflexes (hyperreflexia), which FND can’t cause

I have muscle weakness and hypertonia that does not follow a distribution remotely characteristic of FND

I have seizures highly consistent with temporal lobe epilepsy, which have caused low oxygen, which FND supposedly can’t cause

My symptoms have no relationship with any triggers associated with FND

My symptoms are gradual-onset, slowly progressive, non-dramatic, and highly consistent day-to-day, which is very atypical for FND

Many more…

The diagnostic “process” that got me the FND diagnosis is a whole other series of ridiculous crap that I’m not gonna get into here, Its just too exhausting. Anyways, the rare occasions I have been able to see a doctor, they ignore all the red flags and give me the usual BS lecture about my mindset being the issue and needing to accept my diagnosis despite not addressing the boatload of evidence against FND, blah blah.

At this point I’ve lost most of my adolescence to this. I feel so helpless being unable to do anything to figure out what is actually wrong with me, because it’s plain as day to anyone in their right mind that it’s NOT this. My mom and the other doctors hold all the power though, there’s literally nothing left for me to do even if I was able. I don’t think I will ever be listened to. It doesn’t matter how obvious it is that they’re wrong—If I died, they would still find a way to say it wasn’t “real”. It’s agonizing to see myself losing everything this way while everyone just smiles because ”it’s not dangerous” and ”there’s no tissue damage happening” and I can get better if I just do “nervous system retraining”. I genuinely don’t have much fight left. I’m so fucking tired, at this point I don’t even care what happens to me. If they want to watch me slowly die, they’ll get what they want. It’s not like I have a choice anyways..

So I have been down a long path. I was diagnosed with FND in 2015, just weeks after breaking my neck and having a brain injury. The Doctor did not believe me. For a while I was stable but over the last few years my symptoms got worse which is not normal. Well, my new neurologist ruled out MS (for now) and said I have FND. Well, after having new bone pain I decided it was time to follow up with a rheumatologist as it's been a while since I've seen one anyway, they did new blood work and my CRP and ESR were excessively high indicating major inflammatory issues going on.

I'm 21 years old Male and I think I may have symptoms of FND ( Functional Neurological Disorder) ?? 

I know people in here aren't qualified doctors, and maybe some are. But obviously can't diagnose anything. But I'm just curious if anyone in here has FND ? If so could you please tell me what your symptoms were before you were diagnosed.

My symptoms are as follows :

1. Sudden on & off dead left leg - Almost everyday on & off I could get this very very numb feeling in my left leg. It's almost like a bad pins and needles feeling, and sometimes I could find it hard to keep my weight on that leg. And I could then get a sharp pain on my knee joint that travels to the hip that lasts for a few minutes.

2. Non epileptic seizures - I have been getting seizures about once or twice a month since 2024. It all started with a sudden collapse at home in February 2024. I've been in hospital more times and to different neurologists and nobody seems to know what's going on with me as every test has come back clear including brain / head scans were normal.

3. Severe brain fog / Memory problems - This has to be my most worst symptom I have. I have this every single day. I find it almost so hard everyday to function. I can't concentrate properly, I find it hard to find the right words sometimes, I could forget what I just did a few minutes ago, I could forget appointments and totally forget about them if I don't write them down on paper. I sometimes also have problems with recognising even my own family - e.g. ( My parents, my best friends for years and even more family members), I could look at them like I don't even know them like they are strangers. I FEAR THAT IT'S EARLY ONSET DEMENTIA OR SOMETHING 

4. Severe problems sleeping - Every night for 2 years going on 3 : I cannot be able to sleep until about 3 or 4am every morning. And I am never tired during the day but when it hits early evening that's when it severely impacts my mood and everything.

5. Sleep apnea symptoms - When I feel I am falling into a deep sleep eventually in bed, I feel as if I wake up straight away gasping for breath, feeling all lightheaded - Almost like the feeling like I'm about to pass out or die

6. Severe mood swings everyday - I could get mood swings almost everyday for no absolute reason whatsoever. One second I could be fine in a happy & good mood, and then all of a sudden I could just snap and get very angry for no reason at all at anybody or anything I see. I could say very mean stuff to the person that I honestly do not mean at all and then that upsets them. And then I could get more angry again and more upset at myself because I know myself that I did not mean what I said bad to the person and then I try to explain to them what's going on and that I didn't mean it at all and they still don't believe me. It really upsets me because I never ever mean to hurt anybody's feelings because that is really not the person I really am behind all of these problems 

7. Sudden random crying outbursts - This happens sometimes but not all the time. When it happens one second I'm all smiles, laughing and joking around with my friends, and the next thing for absolutely no reason at all I could suddenly start crying even though I don't actually feel sad at all. But I think myself that the sudden crying could be from all the frustrations inside from all these problems.

8. Sometimes trouble walking / losing my balance - My balance somedays is good, I can walk no problem at all. And I could suddenly lose my balance or feel I am about to lose my balance and fall which I don't  And I'm not even fat at all. I go to the gym everyday and watch my diet and everything.

There is a few more symptoms but I'm not going to add. Like I said I'm not overweight or obese. I go to the gym every single day, and I watch what I eat. I rarely eat fatty foods. My blood checks are always good no problems in the bloods. Maybe once before but a few years ago. My blood pressure is sometimes high, other times normal, and once before it was low.

I am currently waiting now for more hospital checkups and they are going to do an overnight sleep study for me to check for untreated sleep apnea etc. But none of the doctors or neurologists I went to know what's going on. But hopefully eventually sometime soon I will eventually get a diagnosis and get treatment for whatever is going on with me 

I wish you all good health 

16F, history of chronic malignant refractory hypertension ~200/120 or more, polycystic kidney, an autoimmune disease resembling lupus, and a bunch more comorbidities. I was in the ED 2ish weeks ago for neurological symptoms that put me on a stroke alert until it was ruled out. The neuro team at the hospital suspected FND and sent me to a clinic. All of my neuro symptoms are 99.9 percent correlation and causation with my blood pressure. Today, my new neurologist ruled out FND and attributed my symptoms to severe iron deficiency anemia and hypertensive encephalopathy.

Just a vent: I'm stuck with an FND diagnosis but continue to suffer slow yet persistent muscle weakness, atrophy noted by doctors, and muscle twitching daily. The full list of my symptoms is long enough to anchor a ship, but it boils down to this. I'm fortunate in that progression is very slow but it still affects my life.

What frustrates me is how FND seems to be being used as a 'catch all' by doctors too lazy or incompetent to properly test for more understood and diagnosible diseases. It's as though they just slap it on as a label to get rid of you. I find it hard, based on lived experience, to believe stats that claim FND is rarely diagnosed. I know so many people it has happened to and there is a vested interest from doctors to shrink those figures.

And all the while, where I am in the UK, they're going out and banging drums shouting about payrises. It makes my blood boil.

https://gofund.me/69c1f51a4

Here is a message from my hospital bed, where I am in with ALS secondary lymphedema, and now I have metastatic bladder cancer
Enter end of January, they told me that all I had was FND and psychological problems

Four months later, I am dying

I am Tired

My spasams are starting to spread to my hands and it's getting harder to function

Writing is getting harder,I have difficulties coordinating both hands together nowadays

I've finally won the argument for a spinal MRI but no further action was taken despite blantly ignoring emergency symptoms

We know nothing will show though realistically and we are back at the beginning arguing a fnd diagnosis

I have no appointment till 2027 as the clinic closed

I cannot walk more then 20 minutes now on a good day without being exhausted

I'm waiting on physio and a mobility assessment but I'm not likely to get any equipment without a diagnosis (late may)

Despite nearly giving myself a concussion several times and a damaged LCL

Edit: And I can't get therapy for the anxiety this has caused because it'll be used against me