r/NeurologicalDisorders

I'm at a breaking point and hoping someone here has seen something similar or can point me in the right direction.

Timeline:

About 2 months ago: Started with extreme fatigue, brain fog, word-finding trouble, and memory issues.

Progressed to: Waking up almost every morning with a vibrating/buzzing sensation on the right side of my head/nerves, plus heavy pressure under my skull.

First ER visit: Nearly fainted, went to emergency. Bloodwork after an 8-hour wait — came back normal. Was told I have "MDD" (major depressive disorder), prescribed a sleep aid.

Symptoms worsened: Pressure and morning vibrations got more painful, sleep didn't help. Saw a clinic doctor, started an SSRI, was told it was anxiety (didn't feel like anxiety to me).

Took 2 weeks off work, visited family hoping to feel better. Symptoms continued; was told it was likely SSRI side effects and would pass.

Developed hypervigilance and one auditory hallucination, hearing my mom's voice telling me I was dying. Very frightening.

Second ER visit: X-ray done, came back normal.

Back to work, but fatigue worsened — needing an hour of rest just to get through the day. Started forgetting familiar routes/parking spots I'd used for 4 months.

Developed heart palpitations, especially trying to sleep. Nearly fainted again, this time with slurred speech afterward. Called 911, taken to ER, waited 8 hours overnight, was told to wait another 8 hours or go home and try a clinic instead.

Clinic visit: Switched SSRIs, added quetiapine for sleep.

Quetiapine helped with sleep, but mornings got worse — now my whole skull feels like it's shaking (not just one area), vision goes shaky too. Started at about 10 minutes, escalated to a full hour over a week.

Third ER visit: Diagnosed with "atypical migraine," given anti-inflammatory nerve injections, referred to a neurologist.

Vibrations and slurred speech returned within days, more pain.

Fourth ER visit: ECG, chest X-ray, and brain CT with contrast — all normal. Given another neurologist referral, told to expect a 2-3 week wait.

Days later: New symptom — burning pain at the back of my head radiating down my neck, plus ringing in my ear and a feeling of pressure/fullness.

Called 811, got a same-day clinic visit; doctor told me to go to urgent care. Pain is still ongoing tonight, started around 5am.

Current meds: Zoloft (sertraline), quetiapine for sleep.

Tests done (all normal): Bloodwork, chest X-ray, brain CT with contrast, ECG.

Still waiting on: Neurology referral (2-3 week estimate).

I have a job I like, a supportive family, both parents alive — nothing in my life circumstances explains this to me. I'm not doubting anxiety/depression can cause real physical symptoms, but the escalating pattern (fainting, slurred speech, whole-skull shaking, heart palpitations, burning pain) feels like more than that to me, and I don't know what to do next except keep showing up to the ER.

Hi,

I'm Male-26 Vegetarian , Indian & Gay!

Never exercised, never hit the gym & I was physically inactive throughout my childhood years.

Now, it all started 3 years back!

After a severe Tonsillitis & antibiotics episode, I started feeling tingling, pins & needles sensation in my right hand & leg. Did the nerve conduction tests & all was fine. Then I went to a neurologist & he gave me a sort of an antidepressant. Which did work! In 1-2 months I was almost normal & I started my work after completion of post graduate (Mid-2024). Then in July'25 the symptoms came back. This time I was even able to experience it in my face (all prominent on right side). Sometimes I felt a weird sensation in right side of my face, sometimes even walking was difficult (though I never faltered). Even a little physical activity left me with a great deal of strain & it took 2-3 days to resolve. But when it got to the face I got scared & went to a GP. He ordered a brain MRI to rule out auto-immune diseases like MS. MRI was clear & he diagnosed me with "Psychosomatic Pain".

The pain got better, I don't know how. I didn't take up any medicine. (I went on 2-3 treks too lateron). It was just going fine I even learned to live with my weird neurological symptoms. It was just going FINE!

But SUDDENLY there is an INCREMENTAL PAIN!

For the past 3 months, I've been feeling weird BACK PAIN. Now, it is like scattered occurences. Like sometimes my lower back is painful, sometimes middle of the spine hurts, sometimes whole back feels painful. But GUESS what, I'm able to move normally & even do some Yoga forms- Ustrasana, Bhujangasana (Snake Like) & Dhanurasana. So, my back is moving just fine but there is a constant pain. And it's like nerve like pain. Additionally, when I wake up I feel fresh for 2 seconds & then again the pain starts. It keeps revolving. There is no localized region. Additionally, I bottom too (take cat cow positions during receptive anal sex) which luckily I've heen able to sustain.Sleep is fine too!! Sometimes standing for long makes the pain worse. And yes, I feel it in my right leg. THERE IS OCCASIONAL BALANCING ISSUE SENSATION TOO! Wherein I feel that I'm about to loose balance & fall on right side.

What should I do? I feel like going to GP but I don't wanna start the loop of mysterious diagnosis again!

BUT the underlying situation is that it shouldn't be happening to a 26 year old! All this is scary! I'm delaying gym owing to this as I don't know what's happening? Any clue what can it be?

My age is just 19 and something strange is happening to me. From last 3 months, I am unable to write. Yes, I don't know but it seems like I have forgot how to write. Whenever I try to write my hands and fingers start shivering badly. Whenever I try to write I feel that I have no energy in my fingers. I can't even draw a straight line. Please someone tell what happened to me.

Hi everyone, thank you in advance for reading.

**TLDR:**
24-year-old former professional level athlete dealing with severe, worsening neurological symptoms that have heavily disrupted my life for the past two years. I fractured my skull several years ago while doing a double axel and never got treatment, or a scan/MRI. Currently dealing with uncontrollable vomiting flares, extreme exhaustion & weakness, vision problems, headaches and migraines, stabbing and deep pain all over my body. I’ve been to several specialists the past two years trying to figure this out, to no avail.

We’ve ruled a lot of things out, but I haven’t had my head checked yet. I met with a neuro ophthalmologist back in Nov 2025 and it was an absolutely terrible experience lol. I still can’t see even though they updated my prescription.

I understand I can’t get my answers from Reddit, but I want to know what my next steps should be. Should I bypass my doctors and just go straight to the ER for an MRI? Should I be doing something else instead? Let me know your thoughts!

Details:

5’7” , 110–115 lbs (Unintentional 30 lbs weight loss over the past two years)
Primary Complaint: Chronic, worsening neurological vomiting, severe hiccups, deep bone-like limb pain, frequent oral/throat ulcers, and profound fatigue.
Duration: Gradually developing since late 2017, severely escalating over the past 2 years.
Current Medications: Lamotrigine 150mg, Prozac 40mg
Smoking/Drinking/Drugs: Vapes cannabis daily; no tobacco or alcohol

Medical History Timeline:

Infancy: Hospitalized for meningitis.
Age 5/6: Acute pneumonia.

Late 2017 (Age 17): Professional-level figure skater. Fell heavily on head attempting a double axel on ice. Sustained a skull fracture and severe concussion; documented positive Romberg’s test. Received no proper immediate medical care/rest; experienced extreme emotional mania and immediate memory loss for several days post-injury.

Early 2018: Suffered severe, necrotic Lipschütz ulcers (extreme pain, urinary retention, bedridden for weeks). Intractable pain unmanaged by OxyContin.

Post-Lipschütz 2018: Hospitalized for a second case of severe, acute pneumonia.

2018 – Present: Gradual development and progressive worsening of chronic neurological, visual, gastric, and systemic symptoms. Developed urinary incontinence (improved but still present) and escalating vision problems.

Past 2 Years (2024-2026): Significant escalation. Unintentional 30 lb weight loss. Normal results on chest X-ray, chest/abdominal CT, upper endoscopy, ultrasound, and blood tests. A neuro-ophthalmologist noted abnormal eye movements and a "suspicious optic nerve" but dismissed it as congenital. He also called me hysterical for becoming emotional describing the impacts of this so I don’t exactly trust his professional judgment.

Recent Months (Mid-2026): Had a 2-3 month window of no vomiting. In April 2026, experienced a fainting spell followed by immediate memory loss. Continuous vision problems.

Past Few Weeks: Sudden, aggressive return and worsening frequency of cyclical vomiting, headaches, migraines, exhaustion, and severe vision issues.

Current Symptom List:

Head/Neuro: Frequent migraines with aura (vastly increased frequency), severe physical pressure behind forehead radiating to neck/eyes, ear ringing (short and long bursts), fainting episode (most recent April 2026), trouble concentrating, and mid-sentence short-term memory lapses.

Ulcers: Severe, long-lasting, and highly frequent ulcers in the mouth, throat, and tongue.

Vision: Double/blurry vision, constant visual static (visual snow), flashes, floaters, light sensitivity, and severe, prolonged palinopsia (after-images) that make me feel temporarily blind. Inability to drive at night and a general feeling like I cannot see even though I physically can. Mostly can’t see in the dark anymore

Balance & Motor: Severe balance issues, general chronic wobbliness, situational falling episodes, and profound systemic physical weakness/fatigue. Inability to make fists in the mornings.

Gastrointestinal & Systemic: Intractable, cyclic vomiting (repeatedly throughout the day, rarely exceeding two consecutive days), awful hiccups, urinary incontinence, and severe chronic fatigue.

Pain: Deep, unreachable, bone-like aching pain in legs, wrists, arms, and fingers. Accompanied by superficial, quick, migrating electrical stabbing pains all over the body. Rubbing the skin provides emotional comfort but does not decrease the physical pain.

Normal mri with contrast for my brain, normal ct and eeg for my brain How common is this? My mom is being told by my doctor that I am hypochondriac despite having eye tracking problems and memory problems mixed with false memories and weird numbness in my legs that last for hours until it disappeared and waking up with headaches and feeling headaches in my dreams. I never had those symptoms before and slowly develop them in over 2 years. 5,5 feet tall and male

I never heard of Freezing of gait until i went on here a few days ago & heard other peoples stories

I'm 43 yr old Male I have mild CP and up to about a year ago i could walk fine anywhere i went

but now when I'm walking especially outside on concrete or on a road or open spaces or around curbs i will get nervous & freeze and i wasn't sure what was wrong. me & my parents were just thinking it's anxiety so the doctor put me on lexapro 2 months ago which doesn't seem to be helping & seems like it's making walking worse at times so I'm going to go off of it. I'm going to go see a neurologist and see what they say & probably to physical therapy.

seems like on grass & carpet and if i have walls or objects beside me then I'm fine. also on my basement steps sometimes i will get nervous at the very top and not be able to step on the last step.

i guess i have a fear of falling but the thing is i never fell yet but sometimes i feel the need to get on the ground. I'm guessing it's something in my mind & I'm not sure how to make it go away.

I was recently diagnosed with Functional Neurological Disorder (FND) after almost two years of investigations, and I’m still trying to make sense of it all.

Over the past two years I’ve experienced a range of symptoms, including: Episodes of paralysis or weakness in my limbs, stroke-like symptoms, seizures and jerking movements, limb weakness and numbness and other neurological symptoms that come and go. During those two years I often felt like I wasn’t being believed. Despite experiencing very real physical symptoms, I was repeatedly told that nothing was wrong, and I left many appointments feeling like people thought I was exaggerating or making it up.

To eventually receive an FND diagnosis was almost a relief because it finally acknowledged that something is happening. At the same time, I can’t shake the feeling that it’s a diagnosis that’s been given because no one has found another explanation. I don’t know if that’s a common feeling among people with FND, but it’s something I’m struggling with.

One part that particularly upset me was being asked to record videos of my symptoms for diagnosis. I completely understand that symptoms can fluctuate and may not be present during appointments, but emotionally it reinforced the feeling that I had to “prove” I was ill.

Since receiving the diagnosis, I also haven’t had much explanation about what FND actually is, why it happens, or what treatment looks like. I’ve been told I have FND, but not really what to do with that information. I’ve done some reading and I keep coming across the analogy that “the hardware (the brain and nervous system) is intact, but the software isn’t functioning correctly.” It seems like a helpful way of explaining it, but I’m curious how accurate neurologists and other healthcare professionals actually think that analogy is.

I’d really appreciate hearing from:
People living with FND - did you have similar symptoms or experiences? How did you come to terms with the diagnosis?
Neurologists or healthcare professionals - how do you approach FND? How confident are you when making the diagnosis, and what do you wish patients understood about it?

Anyone who’s found effective ways of managing symptoms or improving quality of life.
I’m still very early in this journey and, if I’m honest, I’m feeling quite confused. I don’t know what my next steps should be, what recovery looks like, or whether these symptoms are something I’ll be living with long-term.

I’d really appreciate any experiences or perspectives.

I'd like to share my story and experience with Miller Fisher syndrome. I'll preface this by saying that I'm one of the lucky ones, and I was never immobile, nor did I have any respiratory issues that required intubation. There are a lot of people that experience far worse symptoms than I did, but I hope that this post can still be of benefit to someone, or maybe even help steer towards a diagnosis. Due to the rarity of Miller Fisher, it seems like it gets overlooked by physicians, and treatment can end up being delayed as a result.

On September 18th, 2023, I awoke with double vision following a somewhat bizarre cold/flu episode. The double vision I was experiencing was due to an inward deviation of my eyes (esotropia), and was persistent in all planes of gaze and focal distances. I also had bilateral eyelid droop (ptosis), as well as fixed, dilated pupils that were largely unresponsive to light. I got around by keeping one eye closed at a time.

After visiting an urgent care/walk-in clinic later that afternoon, I was instructed to call a neuro ophthalmologist the next morning for a same-day appointment. The neuro-optho conducted a detailed examination, but ultimately no diagnosis was made, nor was Miller Fisher ever mentioned. He did say that the double vision was likely a result of the cold/flu episode I had just gotten over. I left with an urgent requisition for a CT scan and a blood test. Later that day, my family helped fabricate an eye patch as I could only use one eye at a time.

At this point, I was starting to get quite worried. I had no other symptoms besides the double vision, but it was all so strange. Google searches for non-traumatic causes of double vision returned conditions like myasthenia gravis and acute emergencies like brainstem strokes or even tumours. The next day, my legs began to feel slightly jello-y. They weren't weak per se, but I could feel something 'off'. I could still get around fine. I decided to go to the emergency at a nearby hospital - I hadn't had my CT scan yet. At the hospital, I was seen by the ER physician and a resident. Looking back, I think the resident suspected Miller Fisher (I hadn't even heard of it at this point), but he never brought it up. I ended up having my CT scan that night, and it came back negative with no findings. I was then scheduled for an MRI in two days time. The ER physician mentioned MS, but was ultimately quite perplexed.

The next day, my legs began to feel slightly more weak and jello-y, but I still had strength and could get around just fine. At one point, my Googling returned a condition known as Miller Fisher syndrome. I read dozens of case reports, and most of them matched my experiences to a 'T'. I was skeptical due to the rareness, but still, it gave me hope due to the potential for recovery.

After my MRI, I was visited by a neurologist who interpreted my results. He noted that the MRI indicated enhancement/inflammation of cranial nerves 4 and 6 - and explained to me that this was very likely Miller Fisher syndrome. I was incredibly relieved - while Miller Fisher is no walk in the park, the other potential diagnoses were worse. During this assessment after the MRI, the neurologist checked my reflexes, and confirmed that I was largely areflexic, providing further evidence for a Miller Fisher diagnosis. That night, I was admitted to another hospital nearby, to be treated with IVIG. Once at the hospital, a resident had me do a tandem gait which revealed some truncal ataxia.

I ended up spending 6 nights in the hospital, and received the typical 5-day course of IVIG. During my stay, the symptoms peaked. While I was still quite mobile, my core felt completely numb by day 7. The 'weirdness' in my legs persisted, and I began to have odd taste disturbances. At this point, my double vision was severe, and my eyes were about as crossed as they could be. I was never formally assessed orthoptically, but I estimate I had a combined 35-40 prism diopter esotropia, if not more. I also developed slight bulbar symptoms where food would sort of feel like it got stuck in my esophagus after swallowing. A lumbar puncture was performed which revealed elevated CSF protein levels with a normal white blood cell count, indicative of AIDP/GBS/Miller Fisher.

I was released from the hospital with no real improvement. I knew enough about the condition that recovery would be measured in weeks, and it was going to take a while. I went back to work - this was challenging for a bit as my double vision was still at its worst, and I found I often became strained and got headaches easily after only being at work for 6 hours or so. Gradually, over a couple of weeks, the leg issue, taste, and bulbar symptoms began to disappear.

My double vision was not improving at all, and I started to become quite depressed, and was convinced my vision was ruined for the rest of my life. These were my darkest days throughout the course of the condition. Nearly two months to the day after symptom onset, I noticed things were slightly closer together when looking right up close in a mirror. I took photos all the way from symptom onset, and sure enough, my eyes were starting to turn back out ever so slightly. Over the course of the next month, my vision began to normalize, but I was still seeing double. Progress was not linear - there were weeks when I noticed a big improvement, while some weeks not much changed. There were even periods where I regressed. My eyes were also better in the morning (objects were closer together), but began to fatigue later in the day. I had angular diplopia as well (due to a trochlear/4th nerve palsy), but this was also improving. I had two pairs of safety glasses, each with the opposite lens occluded that I used in place of a patch. I took B12, magnesium, and fish oil regularly. I also tried to elevate my heart rate by jogging in place and doing pushups - the idea was to help increase blood pressure modestly to help clear debris and transport nutrients. This probably had no real effect, but I felt that every little thing I could do to help recovery was worth it, no matter how futile it may have been.

I ended up regaining singular vision 87 days after symptom onset. I still had double vision looking to my left, and in some other planes of gaze, but I could see with both eyes. Recovery continued, and at 5-6 months after symptom onset, my vision was 95%+ back to normal. By one year (give or take), I was fully recovered. Today, two years to the day after symptom onset, the only persistent effect of the condition is that my left pupil is slightly larger than my right in diffuse lighting. The difference in size is small, and I may have honestly had this all my life - I can't be certain it's because of Miller Fisher.

If you've made it this far, I hope that this post has helped you, or has at least given you some information! Miller Fisher changed me, even two years on. When I was in the middle of it, I ended up contacting about 12 or so people on Reddit that had Miller Fisher in the past, and they all got back to me and shared their story. It really helped me through some of the bad days, and I'd like to 'pay it forward'. Please feel free to reach out or reply to this post if you'd like to chat about it!

Edited to add details about ataxia and CSF protein.

I'm hoping to hear from people who went through a long diagnostic process before getting answers.

For several years I've had progressive, almost entirely right-sided symptoms: started in my right leg (calf felt like it was "falling asleep," trouble running), then in my right arm and hand (clumsiness, dropping things, trouble with fine tasks). At one point I went from jogging to needing a cane for support within about a year. With my muscles, more than weakness, it feels more like rapid muscle fatigue — my muscles get tired, sore, tingly, with a pressure feeling — but a quick strength test at the doctor's office usually comes back "normal," which has made me feel dismissed.

Back in 2022 I was hospitalized for this after a flare-up that caused me to not be able to lift a fork when I was eating. Brain and cervical/thoracic MRI were read as unremarkable, EMG was normal, and I was ultimately labeled with functional neurological disorder — partly based on a waxing/waning exam and a psychiatric history (PTSD, Anxiety, OCD, Depression). But my workup was never fully completed (some labs were still pending at discharge), I was never tested with a contrast MRI of the full spine or a lumbar puncture, and I have a genetic condition that affects fat-soluble vitamin absorption that was never factored in either, and obviously complicates a diagnosis.

My questions for this community:

• For those eventually diagnosed, how long did it take and what finally got you a complete workup (MRI with contrast, spinal fluid testing, etc.)?
• Did anyone here get labeled "functional" first before getting a real diagnosis? How did you get clinicians to reopen it?
• What kind of specialist finally made the difference?

Not looking for anyone to diagnose me — just trying to learn how others advocated for themselves and what testing gave them clarity. Thank you.

Tengo 15 años llevo alrededor de ya casi 2 años con fuertes problemas neurologicos, empezo con fatiga incapacitante horrible, llegue a tener dias dónde por alguan razón mi cuerpo no queria responder me costaba moverme mientras mas lo intentaba menos podia, termine con hipoglicemias severas por alguna razón que aun no entiendo valores de como 40 por alguna razón luego de eso estuve con multiples episodios donde toda mi cabeza se ponia extremadamente sensible haciendome incapaz de soportar cualquier tipo de tacto y todo el resto de mi cuerpo se sentía desagradable, por lo menos solo duraba un tiempo, pero cada vez duraba mas y mas hasta que un dia simplemente se me oprimio toda la cabeza se me puso extremadamente sensible y sentia como descargas en la cabeza y por alguna razón empeoraba si me quedaba quieto, no podia hablar las molestias se disparaban no podia hacer casi nada todo era insoportable, me la pase dias haci y mi madre no hizo nada por que desde que salieron algunos exámenes normales no tengo "nada" y simplemente fueron exámenes sangre ni siquiera examenes neurologicos ni nada, se niega a considerar que tenga problemas reales ella misma ha negado lo que he pasado y simplemente no puedo contarlo, lo ha reducido a ansiedad o que yo me creo mis problemas, algunas cosas me lograron ayudar a reducir bastante las molestias solo funciono masajes fuertes y ejercicios bastante específicos y relajacion, por suerte pude ver una neurologa en este caso tuve que hacerlo yo mismo, obtuve un diagnóstico que explicaba algo de mis molestias, me receto pregabalina la cual por suerte mi madre accedio a comprar claro luego de tener como probar lo que estaba pasando a pesar de decirlo luego no le dio mas importancia, tome 150 mg de pregabalina por 1 mes y nisiquiera tuve ni la mas minima reacción, anteriormente he tomado, benzodiacepinas, analgésicos y relajantes musculares, que tenia en casa no han hecho absolutamente nada, también mantengo una disociacion horrenda me siento fuera de si y una fotofobia que rodea toda mi cabeza me toma demasiado poder soportar la luz toda mi cabeza se sobrecarga, ire a un nuevo neurologo mi madre quiere que me evalúen denuevo por suerte, lamentablemente en la zona no hay nadie que atienda a mi edad, por lo que ire a uno por telemedicina que es super bueno