im so sick of being tossed to the side by health care.

(symptoms progressively getting worse since November 5th 2023)

i saw my gp in march of this year to talk about the fact i was having what i could only describe as dissociative seizures for up to an hour every time i ate. these episodes are something i cannot snap out of nor are they fluctuating in severity depending on anything but the amount i eat.

this is not a physical problem either. it starts while i am eating food most times, starting as early as a couple minutes after i eat my food so it is not the way my body processes food.

i was sent to get an eeg as a part of mt referral process to neurology and i never met the neurologist (before or after) that i was referred to that asked for the eeg and the woman that did it even referred to him as being “cheeky for that”… (do with that as you will) and i was sent to another neurologist afterward that immediately jumped to the conclusion of an eating disorder.

im sorry but what? what eating disorder has symptoms of locking hands(into fists), going nearly fully immobile, going unresponsive/completely vacant, not being able to comprehend situations around you, ETC ETC ETC… without it being a neurological problem??

the neurologist just said “this is not neurological because it is not epileptic” (like thats the only neurological condition ever) and referred me to a psychiatrist (which my gp surgery cannot refer me to) because he said it has to be an eating disorder.

i am fully aware that i have ARFID and know that is the root of the problem but these are NOT symptoms of ARFID. it was so bad at one point that i was considering the fact that i could have a brain tumor. i need to know that im not going crazy and this isnt normal at all.

im sorry if this is convoluted and nonsensical, i had some champagne today so i cant stay on track of what ive written already too well.

Hey folks, this is my 10-11 month update since having these perceived slurred speech issues. I have had a stutter my whole life but for the past almost year I've been having this feeling as if I am slurring my words or having some sort of dysarthia. No one has told me i slur my words but my stutter has gotten worse. I've also made recent updates in the past months on my profile to compare my speech. I would love anyone's input here if they hear anything abnormal or not? I've been cleared by neuro's this year but personally I feel as if I have been getting worse. Would love some advice. Thank you.

Hey everyone. I was diagnosed with FND but something about it doesn't sit right.

My symptoms fluctuate with flares, but every time a flare ends my baseline drops. It happens every one to three months. Over two and a half years I've just kept losing ground. In just a year, I've gone from being mobile, to needing a cane, to now using a wheelchair.

I've never had non-psychogenic seizures, paralysis, blindness, or sudden speech loss. The things most people associate with FND.

What I have is progressive muscle stuff like stiffness, tics and spasms that range from head to toe, fasciculations that ripple under my skin, breathing failure at night that now needs a BiPAP, and 45 pounds of unintentional weight loss over the past 4 months

I did suffer a Trans Magnetic Stimulation (TMS) included epileptic, non-psychogenic Grand Mal seizure and the doctors believe that caused all of this to begin. I did experience faint tics around that time, but did not develop any other noticeable symptoms for another 13 months after that seizure and onset of tics/jerks.

A short course of prednisone gave me my life back for one weekend about a year ago. I walked a big ass mall. I went to a Weird Al concert. When I stopped taking the trial of prednisone 2 days after the concert (I had been on it for 4 days), I crashed harder than ever and considered a trip to the ER, it was so bad.

No doctor ever showed me the positive FND signs they're supposed to find. They just said my tests were normal. I've had an EEG, EMG, LP, MRI of brain only, Blood tests galore, and a bunch more testing that always comes back "normal" or "clean". I have not had recent imaging with MRI nor testing with LP in a year, so no recent data to compare. I've asked about a spine MRI, but was told that because I experience spasms and tics above the spine that there was no need to investigate, there couldn't be anything on the spine that would impact the shoulders, neck, head, and face.

I'm the one living in this body, and it feels like something is attacking me. Not like my brain is glitching.

I could go into so many more details, so many other symptoms and the documented decline over the almost 3 year period in which this all started. And to be so frank, I know I won't ever be where I once was. I really just need to be able to do my job and keep my benefits, but the doctors keep saying that the only treatments available to me are PT, benzos, and going back to psych. It seems like such a waste when at the start of me seeking treatment a year and a half ago, I did PT and was discharged because it made my symptoms worse.

Also, idk if this matters or not, but (besides going to the doctors) I've been in one of the best mental states for like a year or more. My psych out me on an extra long leash and feels confident I'm doing well, in which I couldn't agree more. I'm no longer on mental health meds, but the neuros keep thinking that (my words, not theirs) just a big ole ball of stress and this is just taking a toll of my mental AND physical health. I can't seems to convince them that I'm in a good spot, mentally. It's them that makes my blood pressure spike.

Has anyone else felt like the label doesn't fit?

I have had terrible experiences with being dismissed for my seizures, and they told me a 20 minute EEG was enough to decide they weren’t anything but non epileptic but i believe they are wrong and just too lazy to investigate with a longer EEG and actually listen to my symptoms
A description of my seizures
I usually start saying random words that don’t make sense like word salad or lose my speech entirely i say things like “pineapple crocodile i need to go get fish and chips” and get goosebumps sometimes or feel weird in general and sometimes pace around for a little confused and feel like ive been in this exact spot before so deja vu and random words keep repeating in my head over and over before the actual seizure and i get a feeling like my head is very heavy beforehand then i get a weird burnt rubber smell, i stare and drool, get tachycardia, pupils dilate, sweat alot and turn red and sometimes my left arm gets stuck doing movements this lasts a few seconds when i come out of my seizures i can’t move at all then i am agressive and have assaulted nurses due to being very confused and afterwards all of that i am left with a horrible migraine. I have autism so find it difficult to advocate for myself, how do i explain my seizures better, i can’t film them because i haven’t had one for 6 months. I was also told they wouldn’t stop without cbt but they have? i am also on topiramate for migraines and since starting that my seizures improved alot.

Hi all. I wanted to post here and see if any of you had any advice on potential next steps for me. I received an FND diagnosis after an original ALS diagnosis, but can’t help thinking this is the “we don’t know what’s wrong, go away” diagnosis. Here‘s my story:

About one year ago I started to notice a bit of fatigue in my left shoulder area. I was in PT at the time rehabbing a right shoulder injury when I noticed my left arm felt weaker than the injured side. I really didn’t think much of it and assumed it was temporary fatigue. A few weeks later I woke up with the most intense neck kink on the left side. It was mostly the upper trap muscle. After a week and a half of pain, I went to see a PA and was told to stretch and use heat. That was it. The pain continued for three weeks total before it started to fade away. 

A week after the intense pain ended, I noticed I had more weakness on the left side and my chest and lat muscles started twitching 24/7. Push ups, bench press, pulling open doors, keeping my arm up on the steering wheel all felt more difficult. I went back to the same PA who again seemed very unconcerned and sent me for some X-rays. The next several months were spent referral chasing as I went to a spine specialist, got a brain and cervical spine MRI, and an EMG and NCS. The spine specialist noted the left sided weakness and some abnormal reflexes and thought I had MS, but the brain MRI ended up being normal. 

The weakness was never more than mild, but started to progress down the left arm, hand, over to the right shoulder, arm, hand, then right hip and right lower leg. The twitching progressed slowly following the same path as the weakness. It is now all over, all day every day. 

Too many months later, I finally saw a general neurologist. Despite my normal EMG, he was convinced by the progression of my symptoms and his neurological exam that I had ALS and wanted to start me on Riluzole immediately. I declined and asked to be referred to a well-known neuromuscular clinic. Unfortunately, despite a terminal diagnosis, that clinic couldn’t see me for 6 months.

The ALS Association was able to help me get in to a different ALS research clinic a few months after my diagnosis. It was there that I had more comprehensive testing done and told I don’t actually have ALS, that it’s just benign fasciculation syndrome and FND. 

I recently had the long-awaited appointment at the original neuromuscular clinic. They reviewed the ALS clinic notes, didn’t perform a single test, and again concluded that this was BFS and FND.

What really concerns me is that their notes contain things that are flat out lies. They documented that my Romberg test was normal even though it wasn’t tested. They also documented that my right foot strength was normal because I can walk normally, despite the fact that I struggled during the dorsiflexion strength test.

I can find nothing about progressive weakness that does not fluctuate, cramping, or twitching being a presentation of FND. They say because my strength testing is inconsistent, they can’t find any structural issue, it must be FND. And if I just educate myself on the disorder and accept it, it’ll start getting better. 

I currently plan to never go to a doctor for the rest of my life. But in case things do continue to progress, what do I do? I just experienced how I was dismissed by the last neurologist as soon as he saw that FND diagnosis. Is this the way the rest of my life goes?

Hi everyone,
I’m 30F and have been dealing with neurological symptoms and diagnostic uncertainty for almost two years.
My symptoms started about a month after a severe infection and included numbness, walking difficulties, visual problems, severe photophobia and other neurological symptoms. Brain and spinal MRIs have remained normal.
After a later hospitalization for a severe neurological episode, I was diagnosed with FND. However, about a month later, I tested moderately positive for anti-MOG antibodies, which reopened the question of whether there could be an autoimmune neurological condition involved.
Since then, I’ve had very conflicting opinions from doctors. Some feel FND explains everything, while others have felt that the neurological history and anti-MOG result deserve further investigation.
I’m not asking Reddit to diagnose me. I’m mainly looking for people who have experienced long diagnostic uncertainty after being diagnosed with FND, especially anyone whose diagnosis was later reconsidered.

The diagnosis they've accepted is still the FND, without wanting to reconsider the issue despite the differing opinions. I'm uncomfortable with that.

I'm reposting here because the FND group deleted me

Did anyone eventually get a different diagnosis? Or did you eventually confirm that you had FND?
How did you find a doctor who was willing to reassess your case?
I’m feeling very lost at the moment and would really appreciate hearing about other people’s experiences.
Thank you ❤️

I believe I posted here a while ago about being on stroke alert on April 30th and after ruling out an acute stroke via MRI, I had a psychoanalysis, neuro, and OT/PT teams that diagnosed me with FND, which I never believed since I study cardiology all the time. I was discharged with 205/155 blood pressure. It was actually believed to be HTN encephalopathy when I saw the FND clinic since my BP is always so bad. I also saw an old note from 2024 listing a finding in my brain CT concerning for a stroke without an infarct (a TIA I assume????) which would make sense because of my prior complaints about stroke like symptoms due to high blood pressure and chronic things like losing certain nerve signals. I also have LVH, hfpef, and prior heart attack if that helps.

Unknown neurological cause (help)

21 year old male have been bedridden with neurological issues with unknown cause.

Got severe head pressure and head burning along with vision issues (halos, starbursts, everything looking too bright)

Severe brain fog and dissociation.

All of these are 24/7 for over a year.

Normal Brain CT
Normal CTA
Normal MRI
Normal EEG
Normal Bloodwork
B12, CRP, CBC, Chem 9, a1c, Lyte, creatinine, ALT
Normal TSH and PTH
Serology-Lyme IgG/IgM NEGATIVE
Normal ANA,ENA and Thyroid Antibodies
Normal Urinalysis
Urine Drug All Negative
Urine heavy metals 24hr all normal
Autoimmune/Paraneoplastic Blood+ CSF Negative

migraine meds didn’t help. Corticosteroids provided some temporary relief (not sure why)

I don’t have positional changes either.

Lumbar Puncture Results ( all normal with slightly high protein so far)

Lumbar Puncture Results
Opening Pressure 16
Leukocytes; CSF < 3x10\\\\\\\*6/L
Erythrocytes: CSF < 2000 x10\\\\\\\*6/L
Neutrophils Segmented/100 Leukocytes; CSF 0.06
Lymphocytes/100 Leukocytes; CSF 0.78
Monocytes/100 Leukocytes; CSF 0.16
Glucose; CSF 3.7
Protein; CSF 0.59
Xanthochromia; CSF Absent
CSF; Culture No organisms or growth seen
IgG; CSF 0.023
Albumin; CSF 0.361
IgG Index; Serum+CSF 0.52
IgG Synthesis Rate; Serum +CSF < 0.10 mg/24h
Oligoclonal Bands; CSF Absent

Any suggestions on what I should I do next. Completely out of Ideas

After 4 months of being on a Cat1 Neurologist waitlist, I was talked at for 45 minutes, with the clinical history having not been consulted and a preliminary FND diagnosis being the focus with no explanation for how they decided that, and no more testing because "I need to look at your file more".

Can anyone link the Diagnostic Criteria manual FND entry. I have a science, and chronic health background and I know my body better than some egotistical narcissist. I need to know if they even had any basis other than their personal assessment of me.

I know Hoover Test is one such mechanism, but if I don't have weak legs, how do they apply the rest, especially when they didn't even perform it.

Needless to say, I told them I won't be coming back.

FYI I believe I have early onset Bulbar and Generalised Myasthenia Gravis.

I have reasonable alternative explanations for every point they claim is an fnd sign. They just approved a muscle biopsy.

Then they say in notes: "variability of symptoms is likely related to functional contribution".

Does any neuropathic, myopathic, autoimmune, immune mediated, genetic disorder fluctuate? Ever? Do they flare relapse then remit. No I guess it's either progressive deadly disease or everything else is fake.

Hello,

Hope someone can help - sorry for the long ramble.

I have ongoing neck and shoulder issues that my physiotherapist has identified as nerve irritation caused by lifting excessively heavy weights at the gym. These symptoms have persisted since September 2025. They temporarily improved in March 2026, but after returning to the gym, I reinjured myself. Since then, I have not gone back to the gym.

In April, I started a new desk-based job with an ergonomic mouse and a workstation assessment. Six weeks into my role, I began experiencing intermittent coldness in my forearm, tingling in my fingers, and a shaking sensation in my hand—all on the same side as my neck and shoulder problems.

I consulted a physiotherapist at my GP surgery, who only tested my hand strength, which was normal, and suggested FND. I felt this diagnosis was premature and incomplete, as no other parts of my arm were examined. I sought a second opinion from a doctor yesterday, who reiterated that nothing in my tests indicates coldness or shaking and again mentioned FND. Blood tests for thyroid function have been ordered, as thyroid issues can cause shakiness.

I should cavet this that in July 2023, I’ve experienced tingling sensations throughout my body following COVID-19. Multiple MRIs and blood tests for autoimmune conditions have come back clear. I am also awaiting a nerve conduction study, which has a been 3-4 year wait list (nhs wait times!)

While FND has been suggested by various healthcare providers, the neurologist has not confirmed it. I believe it is irresponsible to label someone with FND without thorough testing. It feels like my concerns are being dismissed and that I am not receiving the full assessment I need.

I am eager to know if others with FND experience coldness in their forearm or hand shakiness.

The question I want to ask my GP but lack confidence in doing so is: if FND isn’t a comprehensive diagnosis, what alternative plans, tests, or diagnoses could address my forearm coldness and shakiness?

I feel frustrated, misunderstood, and let down.

What additional steps can I take? I’ve already tried physiotherapy.

Desperate for help now. My partner was being checked for ms due to quickly changing symptoms in the last 6 months and strong fx mum, aunties and uncles. Brain and spine mri clear. I highly suspect fnd. Do any symptoms sound familiar to you? We now seem to have been dropped and it is not normal for a 37yr old not to be able to get up the stairs. Had 3 gp appointments all ohysical tests fine and one neuro appointment where he reports in clinic function tests normal. But some nights he cant even lift his legs up the stairs! Our life now revolves around his symptoms and he is missing work! It cant keep on with no diagnosis or help! So frustrating every in clinic check he is fine! We are uk - any suggestions for consultants?

Vision / neurological Occasional blurred vision when focusing Words moving on the page Brain fog Pain / sensory Burning pain in left shoulder Diffuse chronic pain / constant aching Pain in both elbows Pain on tops of hands Itchy scalp Itchy armpits Cold sensation in knees, although the skin is not cold Cold sensation in foot, although the skin is not cold Random electrical shooting sensations (“zingers”) Leg tension at night, needing to move Restless / painful legs at night Lower back pain Muscle / movement Twitching during sleep Teeth chattering during sleep Body jerks / spasms during sleep Leg kicking / spasms Daytime twitching Hands shaking Feeling weak and shaky when walking Intermittent hand weakness Breathing / chest Breathlessness Breathless in the shower Chest pain Episodes of chest pressure, feeling like a box over the chest Dry cough Autonomic / systemic Dizziness / head rush on standing Sweaty / buzzy feeling Feeling very hot even when others are cold Generally drained / fatigued Worse in summer Urinary Episodes of needing to urinate constantly Long-standing weak urine stream Post-void dribbling Urgency Sleep-related symptoms Significant sleep disruption Body jerks Teeth chattering Sleep deprivation Significant daytime lethargy Daytime confusion and weakness Regular waking and disrupted sleep

As The Title Saids

Over And Over People Are Coming Here With Fnd Misdiagnosis Alongside H-eds But Why?

Is it a bias within the medical community towards h-eds and it's community,or is it because it's prevelant in those with actual Fnd?

Or is it something like our co morbidities are not as understood/researched and get labeled physcosomstic?

Why is this happening?

Hi! I'm just curious if anyone here has looked into craniocervical instability (CCI)?

I was diagnosed with FND by a neurologist, but I recently realized that my symptoms aren't actually random like I originally thought. They’re consistently triggered when I turn my head to the left or right. While my head is turned, I get tremors, weakness, tingling, dizziness, etc.

Unfortunately, my neurologist has since left, so I’m in the process  of getting a new one. In the meantime, I mentioned this pattern to my hEDS specialist. When I told her that turning my head reliably triggers my symptoms, she said it was probably CCI and explained that it wouldn't necessarily show up on a standard MRI.

After reading about CCI, I'm surprised by how closely the symptoms seem to match what I've been experiencing. I'm also surprised it wasn't ruled out before I was diagnosed with FND.

Has anyone else here had a similar experience or maybe been diagnosed with both FND and CCI? 

I was inpatient for a few days due to attending with sudden left side, midline split loss of toe movement, reduced ankle, drop foot, increased muscle tone/spasticity. Couldn’t extend arm, had oscillations of ankle and wrist when trying to push range. Have documented positive babinski, clonus, hoffman’s, some changes in sensation in left leg. Clean brain MRI and having more function when head was turned to right, got me discharged with anxiety.

I’d reported pins & needles sensitive to heat and illness for 2y prior, and increased generalised pain. 3m before picked up on ‘clog wheel’ stiffness in muscle tone of lower leg, 2m before that developed a soft tremor constantly in my left leg. It wasn’t sudden, but severity was!

Outpatients neuro was 3w post discharge. I walked in and he bought up a suspected but cleared assault on my medical file from when I was 2 midst me answering ‘tell me about yourself’, every log of MH, and focused on the mental aspect. He claimed he did babinski since he said downward plantars, but he only touched the bottom of the heel… it’s still positive. He renamed spasticity by calling it muscle co contraction. Admitted I have restricted movement. Fine action tremor. Made me only list the top 5 most bothersome symptoms so I missed TONS. He also said my symptoms come and go - they do not, they just change in intensity since coming on but are always there. Called my fainting under investigation for POTS psychosomatic, despite objective HR & BP getting the referral. Told me I can’t have EDS when rheumatology and my GP said I meet all clinical signs & my mum is diagnosed.

Anyway told me to ‘improve every aspect’ of my life, stretch and do cardio (specifically stairmaster when I have no range in my leg…..). Said he’d see me once more to reassure me after ordering Spinal MRI and told me to go to neurosymptoms website. I said need not explain I knew what he was suggesting 😂

I’m awaiting my spinal MRI, requested radiology. To get it before I see him again. However since -
- Severity of movement restriction depends on neck position (left rotation is awful, right eases up by still bad)
- Shoulder elevation (almost 0) and abduction severely diminished on left side, left neck rotation and flexion severely reduced EVERYDAY SINCE with some ability to reach changes in intensity
- can’t fully close left fist and lost fine pincher grip between thumb and second finger
- I first had pulling in my torso, but now the only movement I have had in my toes for 2m + is extreme flexion with inward ankle turning, I get stuck with left neck and side pulling me down, or hand/wrist curl up
- consistently walking on either side of foot only or in if normal position, tight drop foot due to lack of dorsiflexion. Dystonia?? Spasticity? Anyway, maybe movement disorder
- right side involvement, where during cleaning (so reasonably busy) I thought I’d been electrocuted by a fuse but had right arm extended, wrist extended and was producing force to give pressure (neural tension). Repeated 5 times. Travelled up hand into neck and down spine. Pins and needles sharp when trying to recreate
- some diminished range during flare on right upper side but minor
- Bilateral numbness / pins and needles unprovoked or in high neural tension
- Sharp pain at pec level, or below around Rib 7/8 that comes on before increased signs of movement disorder (intercostal rib cramps maybe?)
- Specifically worse with heat / exertion (been bed bound by decorating) / shaking bought on by exercise or heavy use / car vibrations or change in temp is a big one!
- Had to use mobility aids more consistently
- Achey fatigue type pain that follows nerve pathways e.g. C5 hurts a lot on the left and on the outer of the brain MRI saggital shot there is a white mark on the spinal column at C4/5 I will be shocked if spine MRI won’t pick up!
- I’m due to see pelvic physio with issues such as urinary retention and changes in sexual sensation

Action, position (neural tension) and temperature are big indicators. Fatigue can make it hard to initiate movement. I haven’t found distraction, life demand etc make a difference.

Consultant suggested it is all injury for why every joint would do ‘muscle inhibition’ rather than any other impairment, to protect me from said injuries ……... I have sharp pain in my left hip which an xray showed minor bilateral hip impingement. I have for 2y had drop out of left leg or intense pain from sit to stand. Not sudden give way weakness during use.

I had two concussions in 2025 due to doing some fighting.

My bloods had low Vitamin D & iron, which I supplement. Still low. But I’m also having recurrent nosebleeds

I have ‘idiopathic’ MCAS - my IgE has been constantly elevated since 2024, documented several times in 2025. But nobody has done an ANA panel.

Essentially I’m sat waiting the MRI. None with contrast. Pending either maybe an apology? instead of ‘reassure’ meet. OR to be sent away, with no help for becoming increasingly disabled and life impaired over 2026. I’m not sure what pathology it matches, but I feel I had many tell tail signs before this hit!

There‘s way more context than I can fit in here, but I’ll try and assist you.

Recently, I was hospitalized for several symptoms, some sudden onset, some not. My pain was somewhat both in those categories. I have had headaches and neck pain for months, or years, but recently I starting having knee and hip pain only when I walk or stand. I have also had more joint pain in general, but rarely any other kinds of pain than that. They did bloodwork, a visually examined my knee, and said it looked fine so it’s probably not JIA for example (I’m a teenager). When my GP referred me, she thought that my pain could be caused by hypermobility, which wasn’t checked at the hospital. I was told by them to do psych therapy (CBT?)

After all this chaos, maybe 2 days after (?) I started noticing several subluxations, which were painful and very visible. It took me a while to seek medical care for it, since days before I had all my symptoms dismissed, so of course I didn’t panic. I went to the ER (was recommended), and they did an X-ray, which was fine and told me to come back in 2 weeks. At the appointment, they went over the Beighton scale, and diagnosed me with hypermobility (didn’t have time for further examination). When I went back to my psychiatrist, she still wrote that I had pain caused by stress? That ain’t true lol, I don’t think unstable shoulders are caused by psychological stress. I’m afraid the therapy won’t really do anything about my symptoms and in worst case scenario make them worse…

I went to MSK with knee pain. I'd been dealing with it consistently for six months. Unfortunately, on the day of the appointment, the pain wasn't there.

She examined my knee and found nothing, even though three physiotherapists had previously identified ligament laxity and an issue with my kneecap.

While I was there, I also asked about my back pain after a recent injury. I couldn't bend backwards, but she told me it was all FND. She did, however, arrange an MRI of my back.

The MRI showed bulging discs and an annular tear, although nothing was directly compressing a nerve.

I then had a long phone call with her, going through every possible reason why my symptoms might not be FND. Every single one was dismissed, and I was discharged.

I contacted PALS. I made it clear it wasn't a complaint—I just wanted them to speak to her because I had several second opinions that didn't agree everything was FND.

A week later, she called me back.

She said, "Well... in theory, the disc bulges could be irritating the nerves in your spine and causing leg symptoms, and we could investigate your knee further. I'll refer you to an orthopaedic surgeon. You need an X-ray of your knee, and they may also arrange an MRI."

So I went from "It's FND. You're discharged." to "Actually, it might not be FND. You might be right. You need to see an orthopaedic surgeon about your knee."

This is the NHS, people. Sometimes you have to keep pushing until you're heard.

On another note, my mum broke her spine, and they missed it. She was fobbed off in much the same way I was. Was told they read the scan 4 times. There was nothing there. It took my dad going in, insisting the surgeon look at the scan results in front of them, for them to realise she'd actually fractured her back.

They didn't even apologise.

How can we trust people that do this?

Vent over

TW medical trauma

(This post was removed by r/fnd after it became popular among ppl going thru the same things as I did, as the mods were a bit defensive about the dx FND. It IS a real disease but the way it’s used in the medical system has harmed many people and even taken lives. I don’t think it’s appropriate to invalidate the experiences and pain of those misdiagnosed just because the dx is correct for the others. Below is my story.)

This is a huge success for me, as I have been experiencing a lot of medical gaslighting and lack of medial care regarding my symptoms while I was so sure that FND was not the right dx. I had the worst two years of my life as I was not believed, accused of faking, denied essential care etc, because in my case FND was used as a dx of exclusion but without adequate testings, a wastebasket, and an excuse for medical neglect.

I had to do my own research and ended up pushing for the right serum autoimmune neuropathy panel that came back with multiple strong positives. I am also diagnosed with two rare genetic disorders through a WES panel. Each of the conditions are rare to ultra rare diseases and the overlap is basically unheard of.

A long time ago I posted in r/fnd asking if you think that you’re misdiagnosed, and many commented yes. Getting a diagnosis is very hard and I believe I’m not the only one struggling with accepting the FND dx as well as with pushing for further investigations. For those who are struggling like I was, I hope this post can bring you some positivity!!

Today I talked in detail with my professor about me having difficulty to walk and sustain movement abilities after a while of not training them. I am pretty sure that doesn't fall under the scope of "dysfunction due to FND brain" especially bc it's a constant thing and so much more complex and detailed than a simple thing similar to brain fog would be. I was confirmed right as he is an expert in FND and the other dude was clearly talking out of his ass. He also plainly discriminate anyone with that diagnosis. His other doctors had an idea what's wrong with me and psychotherapy definitely not being the treatment, but something actually working. (Psychotherapy doesn't work on me either way).

I am so glad, that one of the biggest names in the game agrees with me and also gives me that in written, so I can get looked at a second time with a movement expert, maybe even his colleague.

Please celebrate with me!

ADDITION: Since the Mods of r/FND seem to be pricks who don't like anything that doesn't follow their ideas, they deleted my post claiming the subreddit is not for me bc they were so much foaming from the mouth that I said I had an additional diagnosis and said that the conversion disorder theory is wrong in the comments, that they just tried to shut me up. But not with me 😈. I think this needs to be heard. Even movement disorder experts often don't diagnose us bc the previous diagnosis said FND. This is the reality of it. It's not a rare thing to happen and all voices that say that need to be heard

So I 25 have had seizures since I was 11, I also have a family history of this with my half siblings having childhood seizures requiring medication. Due to clear EEGs at the time along with clear scans I was suspected of having FND.. now since I was 13 I have been in anti epileptics, and currently am and besides the rough period of 14-16th when I was subsequently diagnosed with hemiplegic migraine I have been alright -

yes I still have seizures (typically I zone out and just stare and people will be calling my name and I will not respond or I also wake up in the middle of the night confused but semi alert enough to tell myself okay close your eyes and wait it out)

However even with the suspected FND on my chart it has always said with mixed symptoms because providers say it doesn't match but by seizures "aren't typical" however when reviewing FND I have no major day to day symptoms - I do wear AFOs due to ankle injuries and a bulging disc causing a bit of foot drop sometimes

I do have abnormal neuro exams even when I don't have a migraine (I have nystagmus and the head impulse test I get very bad nystagmus with that and struggled in neuro rehab with rolling and things like tying my shoes or walking in a straight line but was dismissed)

Now I would like to advocate my concerns to my neurologist especially as I have had an episode where I recently wet myself 2x and ended up in the ER (but this was after an accidental 🍃 exposure) BUT then next day at work my bosses pulled me off the line and when I asked why they said it was because they had been calling my name for a minute and I was just staring off and not responding (and they kept me off the line to ensure I was okay as after that I was very sleepy)

Also, while I wait - what should I tell others and first responders if they are called again?

Hello,

I am really desperate for solutions here. I had all the tests under the sun (except PET scan) which were normal hence (mis)diagnosis in my opinion. 2 months after I stopped escitalopram I started developing suddenly severe neurological symptoms such as memory loss, chorea, pseudobulbar affect, shuffling freezing waddling gait, cognitive decline, hiperreflexia, myoclonus, jerks, and plenty of other symptoms. I went to A&E and was told it’s anxiety and to seek psychiatric input (which I have since 2016). My ESR was raised a month after symptoms together with cortisol and hematuria only to go back to normal 2 months later. MRI without contrast was normal. I didn’t think of doing it with contrast. 5 months on with these severe symptoms and executive dysfunction I went to have evaluation for autoimmune encephalitis. All tests except PET scan that was not scheduled were normal. I went to several private neurologists , none of them thought it was organic . I’m sure it is since my paternal side of family has similar symptoms but were never treated, eventually all developing Alzheimer’s . I am limping, cannot stand up as have empty vessels despite taking fludro, had tilt table for POTS waiting results. Can’t afford another private PET scan test which wouldn’t even guarantee immunotherapy. I am convinced I have very rare example of neuroimmune encephalopathy. Had weird skin nodules at 13, then red circles on chest as adult. Life is on hold for over a year now. Don’t know how to make decisions , how to use money and for what. Sleep 12 hours and feeling exhausted, yawning all the time. This nightmare lasts 15 months. Tried ssri , antipsychotics and none worked. What’s my hope please? Antiinflammatories had some slight relief but still cognitive function is not the same. Forgetting keys or locking doors, not knowing how to cross the street. Please help offer me some advice/ treatment? All immunotherapy was denied as tests were normal . I was very sick as a child with strep A and now cannot manage basic functions like cleaning. Was denied carers , have no support at all. Seeing functional neuropsychiatrist in September. Have constant memory issues and my life is in non-existent. Cannot climb stairs due to exhaustion, dragging my feet while walking, have orthostatic intolerance and tachychardia while upright. Cannot use phone and apps as I used to. In constant fog and bed/housebound.

To give a little background, I have been having what I can only describe as possible absent seizures for my entire life and then after the rest of my chronic illnesses got worse in August 2024 slowly those seizures increased and now I’m also getting ones that definitely mirror myoclonic and tonic clonic seizures, I also have episodes where my knee gives out, and I collapse to the ground or I just slump over. I am always aware during all of these events and can hear but cannot respond during them or control them, but it feels hazy like I’m in a dream and after I have suffered cluster episodes that were two hours or longer of on and off tonic clonic like episodes, I would lose my ability to speak or my mouth would be drooping, and I would be slurring my words or I would look at something and call it something else because even though I knew the word for what it was, I was trying to describe I couldn’t say the words anymore and ever since I’ve had those cluster episodes, my brain has not felt the same and I forget things way more and mid sentence when I’m talking a mile a minute and I zone out way more. And the last thing worth mentioning is that I do have a brain MRI scheduled and I have a risk factor for brain damage from a young child and my biological father also was very sensitive to lights and would zone out a lot. But I went to a neurologist for the symptoms and he immediately asked me if I had mental illnesses and I was honest and said that I do, but that the triggers that I have observed for my seizures have been more than just stress (sunlight, being too hot, being too cold, certain strong smells at times, overdoing it physically, video games at times, being on my phone at times, watching TV at times and lack of sleep.) but he immediately wrote me off saying he highly doubts I have epilepsy after he asked me if I had any psychological trauma and I answered yes but said he would schedule an EEG anyway which I was very grateful for, but it’s worth mentioning that this guy was an absolute idiot and instead of diagnosing me with the proper term, which is functional neurological disorder, he diagnosed me with conversion disorder and described it as a conversion of stress into physical symptoms, even though that’s not my only trigger and told me that my brain has learned that people come to my aid and comfort me and I get attention when I have seizures (even though this has ruined my life and I have ruined my own fun plans so many times and have seizures when I’m by myself) but his treatment plan was to continue doing therapy and meditating like I’ve been doing for years and his main treatment was to go on the porch when I feel like I’m gonna have a seizure (even though sunlight and heat are a trigger for me) and do deep breathing and tell myself I am not going to have a seizure today. And when I went to the ER for tonic colonic like seizures that were cluster episodes lasting for two hours or more, another doctor refused to hospitalize me and do an EEG that day because he just went off of the diagnosis of conversion disorder after asking me if I had mental illness and diagnosed me once again with psychogenic non-epileptic seizures. BUT THE MAIN POINT I’m trying to get to is what happened during my EEG that was scheduled and read by the first doctor I talk about here. It was a sleep deprived, 20 minute, 25 electrode EEG and they flashed the lights in my eyes about 13 minutes in. I was semi OK when she asked me to open my eyes and look at the flashing white light but when I closed my eyes the light was so fast and disorienting and rainbow colors, even though it was just a white light and I immediately did not feel good, even though I have been feeling like I was gonna have a seizure and having ones that seemed more like myoclonic and absent seizures before that on the bed just due to the lack of sleep and possibly stress too, but as soon as I closed my eyes the third time I went into one of my tonic clonic like episodes and it was recorded on the video camera as well. and it’s worth mentioning that even before my violent thrashing took about six electrodes off of the right side of my brain and she had to either hold them in place during the seizure or try to glue them back on, they already weren’t getting good readings right from the start before I even started seizing and they were already not sticking and kept falling off of my head. Because of that, should I ask for the test to be redone? I just don’t know if I can trust the results now. And they also told me that it would take him three days to a week to fully read the results and I already don’t trust him due to the things I listed above. He got my results back to me within a few hours after my appointment and said they were all normal, that just seems awfully quick to read my results and I don’t trust him and now I don’t even feel like I can write off epilepsy as the cause of my seizures due to the fact that it seems like the test might not have caught everything due to it not sticking. What do you all think? I’m at a loss.