Personal Account of Misdiagnosed Neurological Condition by a Medical Student
A bit about myself. I live in Kazakhstan, a country in Central Asia. I'm 21, a student, in my 4th year of medical school. As they say, when there are no problems, we create many imaginary ones, but when a real problem appears, the others magically disappear.
I lived like an ordinary person, nothing remarkable. Routine, studies, work, etc. But then came a moment when the storm hit. On September 3, 2025, while taking a shower, I was suddenly overcome by numbness in the entire left side of my body. Everything went numb, from the top of my head to the toes on my foot. The numbness felt like I could still sense something, but as if through a layer of something else. Since I'm in my 4th year of med school, I started checking my tongue, smile, and muscle strength for symmetry, suspecting a stroke. Those were all normal except for the numbness. I somehow immediately understood it wasn't a stroke. But I still called an ambulance. Believe me, if you've never experienced neurological numbness, it's truly terrifying and frightening. The ambulance took me to the hospital. Fortunately, the doctor on duty and the neurologists were competent. Along with the numbness, I also developed increased muscle tone (hypertonia) on the left side, in the same area as the numbness. The main suspicion was encephalitis or meningitis. They did a spinal tap (lumbar puncture); as expected, they found nothing. Since there were no paralyses or pathological pyramidal signs, they didn't do a CT or MRI. They discharged me the same day after the puncture and told me to get an MRI of the brain with contrast. They probably suspected multiple sclerosis then but didn't tell me. A few days later, I went to see a neurologist as an outpatient. All those days, the symptoms hadn't gone anywhere. The neurologist immediately suspected a demyelinating disease. Also sent me for an MRI with contrast and, in addition, of the cervical spine. On September 9, I was already in that machine. The result: nothing, not even any suspicious areas. Went to the neurologist, he said it's not MS, go home, sleep peacefully. I asked him, what is it then? He shrugged, said psychosomatic. Well, and prescribed me muscle relaxants, as the hypertonia hadn't gone away. And here's the most important thing: the tone really did decrease on the muscle relaxants. Why am I mentioning this? It's a sign of the medication acting on an organic lesion, just as you described with your wife. This should have immediately ruled out a psychogenic cause, because psychiatric pathology doesn't behave like that. Well, I took the course, everything went away, everything stabilized as before. But not for long.
Already on October 5, I noticed it became difficult to swallow and my speech was slightly slurred. As it turned out, my tongue deviated to the right. This is a symptom of damage to the pyramidal tract responsible for muscle movement. And on top of that, hypotonia (reduced tone) and weakness appeared in the muscles on the left side. I only managed to see a neurologist on October 14. This time, the neurologist was very rude. He got annoyed, asking why someone so young is going to doctors. In short, an unpleasant character. Well, somehow he examined me and sent me again for an MRI of the head and neck, but this time with angiography and venography. On October 21, I went into that machine with all my symptoms. And again, the result was clear. On November 5, I saw a third neurologist. He didn't even really look at the papers. Almost from the doorway, he started asking if there was stress, family problems, if I had experienced violence. I was quite surprised, what does that have to do with anything? I sat down. I showed him the MRIs, he barely looked at them, sat down opposite me, and gave a very superficial examination. He didn't check reflexes, didn't check for pathological pyramidal signs, even though he should have, he was obligated to. I, even as a student with no experience working with neurological patients, understand that perfectly well. And he told me: you have FND. I asked what that is, he said it's all due to stress, and go home as quickly as possible. I immediately understood, even on an intuitive level, that something was wrong here. I said you didn't check the tone, didn't do anything, listed all the arguments for an organic lesion. He said there isn't one, where's the proof?
Well, in short, I left there completely disappointed. In the following months, the weakness in my limbs didn't go away. And the tone increased again. Now I understand it's spasticity, as my gait has changed, and it's become difficult to make sharp movements with my limbs. Today is January 21, and things are very bad. Even people around me notice changes in my speech, my gait, my tremor.
I have several overlapping symptoms with your wife. For several months before this nightmare started, my right eye began closing poorly during sleep, it's just open when I sleep. So it's been drying out for about a year now, but I still see fine. Also, like your wife, I have problems with the intestines and stomach, and quite severe ones. And my current symptoms are distantly, but still, similar. Forgot to add, there's a droop of the left corner of my mouth, moderately pronounced, but present; otherwise, facial expressions are preserved.
Honestly, I have objective signs of an organic lesion, like the tongue deviation and spasticity. And honestly, I don't know what it is. Possibly Amyotrophic Lateral Sclerosis (ALS), possibly MS. Possibly an unknown disease. Maybe your wife and I have the same illness.
Regarding your wife, I read everything carefully, analyzed it. Regarding my "FND," I don't believe in it. Psychiatric problems like depression and anxiety appeared in me against the backdrop of months of uncertainty and suffering from the symptoms. Even though I'm a student without much experience with hospital patients, I understand physiology, pathophysiology, and the mechanism of symptom development perfectly well. Looking at your wife's history, it's clear this is definitely not FND. The presence of facial asymmetry is a lesion of the pyramidal tracts, which, believe me, cannot be fabricated psychogenically. Also, blaming vision, gait, and speech problems on psychiatry is simply a crime. You clearly need further investigation. I looked at your wife's brain MRI. I have some small experience in this; I would definitely see something suspicious. Based on the MRI data, I can say there is no focal lesion or tumor in the brain. I noticed something strange. In the right frontal area, more precisely closer to the cerebral cortex, I noticed a certain oddity. The architecture of the cortex in one area is clearly different from others. It's more convoluted, and the differentiation there is frankly irregular. Maybe you noticed it yourself. However, I'd like to clarify something. What did the radiologist write about this? Did they even notice it? It's a shame I can't attach a screenshot with my notes here. It's important to clarify whether this is a congenital defect or an acquired one. If acquired, one could think either of some localized and specific neurodegeneration, or the consequences of some trauma or inflammatory process.
Regarding your thoughts about FND, I share your opinion. This condition is not a diagnosis. What some fantasists say about neurons restructuring in the cortex is untrue. They do reorganize networks, but locally, only in the frontal lobes, and even then in small areas, with low activity, and this process finishes after the age of 25. But the motor cortex responsible for movement and muscle strength never restructures. These connections formed in the womb, they are very strong, and they can only reorganize if an organic lesion occurs and they (the connections) bypass that organic damage via a different, detour pathway.
In Western countries, they often diagnose FND in such conditions. In our post-Soviet space, both in Russia and in my country, there's an analogue of FND. Here, it's called vegetative-vascular dystonia (VSD), which has 150 symptoms, from headaches to complete paralysis. And as you understand, here too doctors mistakenly take organic diagnoses for hysterical ones. The description of FND by psychiatrists themselves—through sexual incontinence, "hysteria of the uterus," male lust, some long-unspoken resentment, theatricality, and all that—sounds like the ravings of a madman. The connection between objective loss of strength and memory loss with not having taken revenge on someone or not having had intercourse with someone in time is completely incomprehensible. It's something on the level of mystical thinking.
I wish you luck. I wish your wife a full recovery.
Yo WHAT is the deal with these drs’ attitudes towards patients who even dare to QUESTION the legitimacy of an FND diagnosis?? Is the mafia behind this? 😂 I half expect you to get angry anonymous phone calls that are clearly coming through a voice-changer saying something like “you better stop asking questions… or else.” and then just hang up. This is truly wild. What do these drs stand to gain by arguing with you anonymously?? What is their goal? Surely they don’t think you’re going to actually be swayed by them being so rude, and they can’t possibly think that speaking to you and the writers here so rudely will make any of us trust what they’re saying and stop discussing our skepticism, so what’s the point of them doing all this? It’s just very childish and reveals an emotional dysregulation that’s honestly quite concerning coming from a doctor who holds so much power over others’ lives.
To the OP med student in Khazakstan- being in your 4th year of med school by age 21 is incredibly impressive! I have a feeling that intelligence will benefit you when it comes to finding an answer to your medical problems. I hope you find that answer soon.
Thanks, @S. F. I think there is actually quite a bit of irony in this exchange.
One of the central reasons this site exists is because I am concerned about diagnostic closure around FND, the dismissal of legitimate scepticism, and the tendency for professional authority to sometimes substitute for actually demonstrating a claim.
Then an anonymous neurologist arrives here and, rather unintentionally, seems to demonstrate exactly the behaviour the site is critical of.
I am repeatedly reminded that I am not a clinician and therefore supposedly lack the knowledge required to challenge their conclusions. Yet the same person, without examining this student, without access to his complete medical history, tests or imaging, felt comfortable making remarkably confident statements about what his symptoms could and could not represent.
My position was never that I knew what was wrong with him. It was almost the opposite: we don't know, so don't close the diagnostic door prematurely.
The insults, Dunning–Kruger accusations and ‘cosplay as a clinician’ comments only make the irony harder to miss. If the intention was to convince sceptical patients that their concerns about FND and diagnostic closure are misplaced, I don't think this exchange achieved that. If anything, it played directly into the concerns this site was created to discuss.
And to the original poster, if you're still reading this: how are you doing?
The last time we spoke, I believe a new neurologist had become involved and there had been some additional findings or discoveries. I would really like to hear what happened after that and whether you are any closer to understanding what is causing your symptoms.
Please update us when you have a chance. I genuinely hope things have moved in the right direction for you.
Talking about threats, checkout this hate mail that I received:
https://fndnope.org/posts?postId=87#comment-439
To his credit, Dr Grin was sufficiently courageous to put his name to his opinions, unlike “anonymous”. Weird thing is, I'd have no idea what he looked like until he drew attention to himself. The irony! Now all I can see is someone sadly prone to toddler style foot stamping hissy fits, practising as a clinician. Not a great advert for business! Arrogant to suggest medicine knows all there is to know about chronic conditions and neurology….. “
Opinions touted as facts ARE misinformation.
Cowardly “Anonymous” hate email, is a grim reminder of the weird post truth era we live in, where emotions trump objective reasoning. Any focus on facts gets lost in the intensity of it all, as limbic override kicks in.
I think “anonymous” may benefit from some deep breathing exercises?
Trivialising medicine is clearly not the aim here. Quite the opposite in fact. Exposing the dangers of misdiagnosed FND, and missed treatable biomedical conditions is crucial for patient safety. The effects of
this are FAR FROM TRIVIAL, and linger like a festering wound for those of us who had to experience this. Anonymous doesn’t understand how “fucking dangerous that can be”.
Humour is purely a way of coping with this distress, as AI puts it; humour acts as an adaptive way to process trauma, pain, or everyday struggles without becoming completely overwhelmed. Maybe some of us are retraining our own brains to cope with the adversity this causes.
Humour being subjective, means we can choose not to look/listen when it doesn’t suit our sensibilities. So how does this justify threats by the “anonymous” humour police?
Patients shouldn’t need to subjugate to authoritarianism in medicine. Its profoundly wrong. Authoritarian paternalistic attitudes aren’t reassuring, unless patients yield in good faith. In order to do this, one must believe doctors never make mistakes, which do actually happen according to “anonymous”, in a brief moment of humility.
On the subject of authoritarianism, what’s with the reference to 1930’s Germany (Röhm-Putsch)? Sinister! If “anonymous” really is a clinician, ironically, they have by their own hand portrayed themselves as arrogant and
blinkered, not to mention deeply disturbed. The iteration of the word ‘cosplay’ (I knew I’d seen it before as I had to look it up) is “on brand” for aggressively angry @Anonymous neurologist.
FNDNope is READDRESSING THE BALANCE. The distortions are already out there, on neurosymptoms.org, in the academic literature, uncorrected for bias. Front of house on neurosymptoms.org, the hardware/software analogy still describes purely a “software” issue, in spite of recent fMRI findings pointing to brain “hardware”
changes. There’s a 2009 PDF recommending graded exercise therapy for people with ME/CFS, since NICE guidelines changed in 2021, is no longer relevant and actually harmful for these patients. The FND sales pitch is still entrenched in hard sell psychosomatic.
Thank you FNDNope, for advocating. Authoritarians do eventually get overthrown.