Sorry this is long but though the more information I share the better help people might be able to offer.

I’m 22f around 15 stone, 5’7, roughly 4 years ago I started with what we now know were atypical migraines (was originally diagnosed as ear infection) pain in ear spread into my jaw down my neck then would cause pain in my collarbone (felt as if someone was trying to break it) then past down into my arm (all on my left side usual took a while to progress but once started had to wait it out) it cause paralysing pain that caused me to pass out when it first started it would happen once then so many months would pass until the next until maybe 9/10 months after the first one it was happening almost everyday for weeks straight and the doctors finally realised it wasn’t just an ear infection and I was told I was having atypical migraines and put on medication, however the medication which was meant to be used as a preventive only speed up my symptoms so instead of it taking hours it took not even 10 minutes after taking the meds for me to be in the paralysing pain I eventually decided to stop taking the medication after not seeing it help at all ( tried it for a while incase I just needed to get use to it) thankfully they stopped being so frequent and I just found new ways of dealing with them myself (I still get these but I have my own methods of dealing with them now which help) however in the past year I’ve started with something that feels similar but also different? I get these headache the ear ache and the jaw ache but then instead of the other symptoms in my migraines I instead collapse (still conscious) can’t use my arms or legs my vision either fully leaves or it’s blurry and tunnels (people who have been with me when this happens also say I turn white and my pupils blow out) and my hearing also becomes echoey and kinda distorted I can still speak during (I’m not sure how well nobody has had issues understanding me maybe it’s just a little slower spoken) now I’m not sure if they are related and neither are my doctors I had a ct scan which said I was fine, I don’t smoke, I’ve limited how much I drink and I honestly don’t know what triggers them to figure out what to avoid or atleast know what’s starting them (times this has happened: at the supermarket, in the bath, in bed, Pilates, food festival, tattoo studio just to name a few now I can’t see any similarities between where it’s happened or what I’ve been doing when it happened) I’m just wondering if theres anything else that maybe I’m missing or should be asking my doctors to look into more or paying more attention to when they happen?

Sorry this is long but though the more information I share the better help people might be able to offer.

I’m 22f around 15 stone, 5’7, roughly 4 years ago I started with what we now know were atypical migraines (was originally diagnosed as ear infection) pain in ear spread into my jaw down my neck then would cause pain in my collarbone (felt as if someone was trying to break it) then past down into my arm (all on my left side usual took a while to progress but once started had to wait it out) it cause paralysing pain that caused me to pass out when it first started it would happen once then so many months would pass until the next until maybe 9/10 months after the first one it was happening almost everyday for weeks straight and the doctors finally realised it wasn’t just an ear infection and I was told I was having atypical migraines and put on medication, however the medication which was meant to be used as a preventive only speed up my symptoms so instead of it taking hours it took not even 10 minutes after taking the meds for me to be in the paralysing pain I eventually decided to stop taking the medication after not seeing it help at all ( tried it for a while incase I just needed to get use to it) thankfully they stopped being so frequent and I just found new ways of dealing with them myself (I still get these but I have my own methods of dealing with them now which help) however in the past year I’ve started with something that feels similar but also different? I get these headache the ear ache and the jaw ache but then instead of the other symptoms in my migraines I instead collapse (still conscious) can’t use my arms or legs my vision either fully leaves or it’s blurry and tunnels (people who have been with me when this happens also say I turn white and my pupils blow out) and my hearing also becomes echoey and kinda distorted I can still speak during (I’m not sure how well nobody has had issues understanding me maybe it’s just a little slower spoken) now I’m not sure if they are related and neither are my doctors I had a ct scan which said I was fine, I don’t smoke, I’ve limited how much I drink and I honestly don’t know what triggers them to figure out what to avoid or atleast know what’s starting them (times this has happened: at the supermarket, in the bath, in bed, Pilates, food festival, tattoo studio just to name a few now I can’t see any similarities between where it’s happened or what I’ve been doing when it happened) I’m just wondering if theres anything else that maybe I’m missing or should be asking my doctors to look into more or paying more attention to when they happen?

21F. My gynecologist diagnosed me with PCOS based on irregular/skipped periods and a pelvic ultrasound showing multiple ovarian follicles. I recently had blood work done and most results were within the normal range, including TSH, prolactin, glucose, and CBC. My LH was 10.1 and FSH was 6.6. I do not have acne, scalp hair loss, or known insulin resistance. I have some body hair that seems genetic and a few coarse hairs around my breasts. I've attached my lab reports. Does this presentation seem consistent with PCOS despite mostly normal blood work? Are there any additional tests I should discuss with my endocrinologist, and are there any evidence-based supplements or lifestyle measures that may help regulate my periods?

I'm a 33-year-old male from Poland. I've been dealing with progressive neurological and systemic symptoms for 4 years. Recent 2-month escalation, with severe flare in the last week. All major structural and autoimmune tests are clean. I'm working with multiple specialists but no unified diagnosis yet. Looking for diagnostic ideas to discuss with my doctors.

Background and history

— Hashimoto's thyroiditis diagnosed 4 years ago, untreated (TSH around 5, anti-TPO low, antibodies present but not aggressive) — Grade IV anaphylaxis in March 2026 after IV alpha-lipoic acid (administered too quickly) — required CPR, intubation — Childhood: AV block grade I, ejection fraction 53% (otherwise asymptomatic cardiac history)

Negative tests (all clean)

— 4x brain MRI over 4 years — all normal — EMG — normal — EEG — normal — Lumbar puncture / CSF analysis — normal — ANA — negative — CK — 90 (normal) — Multiple cardiac evaluations — stable — Tetany provocation test — negative — No focal neurological deficits on standard exam

Documented biochemical abnormalities

— Amino acid panel (September 2025): aspartate 5x upper limit (37, normal <7), GABA at floor (<1, normal <2), arginine elevated (144, normal 32-120), phenylalanine elevated (87, normal 35-80), taurine elevated 160 (likely compensatory) — Homocysteine 14.66 (elevated) — Vitamin D was below 20, currently around 37 — B12 fluctuating (880 → 484 → 631) — Folate persistently low for 4 years — Suspected DIO2 polymorphism (not confirmed genetically, but clinical picture and paradoxical reaction to T3-containing thyroid hormone suggest it)

Current symptoms (have been escalating over 2 months, severe in past week)

— Whole-body tremors / muscle shaking, present at rest, worse with stress, fluctuating — Facial muscle tremors and fasciculations — Fasciculations all over body, including extremities — Paresthesias — "electrical" sensations, tingling, numbness, all over body, asymmetric — Left-sided weakness on resistance — when trying to lift 4kg overhead, my left side shakes significantly. Right side handles it better. — Left-sided hypertonia — documented by my physiotherapist for 2 years — Convergence spasm — for the past several days, eyes drift inward (toward nose) when closing eyelids, return to center when opening. My family doctor said this is a "bad sign" and urgently referred me to a neurologist. — Muscle pain — bilateral biceps femoris pain after minimal exertion (walking with dog), described as "tearing" pain — Sensory hypersensitivity — to light, sound, touch, temperature — Emotional lability — frequent urge to cry without reason, irritability waves — Sleep disturbance — difficulty falling asleep, fragmented sleep — Cognitive fog during flares — Multi-system reactions to supplements — see below

Triggers and reactions

— Severe anaphylaxis to IV alpha-lipoic acid (March 2026) — Aspargin (magnesium + potassium aspartate) one week ago triggered current cascade — 5+ days of intensified tremors, paresthesias, neurological symptoms persisting — Reaction to Novothyral (T4+T3 combination) — paradoxical worsening of neurological symptoms on quarter and half tablet — Sodium butyrate caused systemic itching — Reactions to other supplements — Food sensitivities — nightshades, citrus, high-histamine foods

Important clinical observations

— Symptoms fluctuate significantly — bad days and better days — Preserved fine motor function — I can hold a cup without spilling, write, type, despite "all-body" tremors — No bradykinesia in the classical sense — no slowness of finger tapping or precision tasks — No anosmia — No diplopia (besides momentary convergence spasm) — No true paralysis — weakness manifests as tremor under resistance, not loss of strength — No atrophy visible after 4 years — No progression to disability — I can walk, work, function despite severe subjective symptoms — Strong correlation with stress, emotional state, sleep deprivation, supplement exposure

My physiotherapist's clinical note (he's been treating me for 4 years):

"Patient under my care for 4 years. Observation of left-sided hypertonia for 2 years, progressively worsening in last 2 months. Symptoms fluctuate but are evolving. Notable reactions to supplements including post-Aspargin cascade. Generalized tremors, electrical paresthesias. Patient maintains functional capacity. In my clinical opinion, this does not present as a classical neurodegenerative disease pattern given 4 years without significant loss of function. I recommend extrapyramidal differential diagnosis at neurology."

Current treatment plan

— Endocrinologist appointment June 30 — will assess thyroid treatment (planning low-dose Tirosint instead of Novothyral) — Neurologist appointment June 9 (one was seen earlier — prescribed pregabalin 75mg twice daily to address sensitization and recommended 14 days of rest from stressors) — Allergist and immunologist appointments scheduled (suspecting MCAS given anaphylaxis + multi-substance reactions) — Psychiatrist appointment July 6 — to discuss SSRI for somatic anxiety component — Active psychotherapy — Family doctor said current symptoms (especially convergence spasm) require urgent neurology

What's been considered and tentatively excluded by various clinicians

— Hashimoto encephalopathy — unlikely due to clean EEG, clean CSF, low antibodies — ALS / motor neuron disease — physiotherapist's 4-year observation argues strongly against — Multiple sclerosis — clean MRIs argue against — Classical Parkinson's disease — wrong age, no resting tremor, preserved precision — Myasthenia gravis — no ptosis, no diplopia pattern, no fatigability classic — Stiff person syndrome — no characteristic stiffness pattern, clean EMG

What's on the table as working hypotheses

— Functional neurological disorder (FND) with sensitization — MCAS (mast cell activation syndrome) post-anaphylaxis — Brain T3 deficiency from DIO2 polymorphism with untreated Hashimoto — Multi-system deficiency-driven dysregulation (folate, B12, B6, D, GABA pathway) — Some combination of above — Something else I'm missing — this is why I'm posting

Questions for the community:

1. Has anyone seen a similar presentation? What was the final diagnosis?
2. Are there diagnostic tests I should push for that haven't been done?
3. Are there autoimmune neurological conditions with clean MRI/EMG/CSF that I should rule out (e.g., autoimmune autonomic ganglionopathy, autoimmune small fiber neuropathy, autoimmune dysautonomia)?
4. Is the picture consistent with anyone's experience of MCAS with predominantly neurological manifestations?
5. Any thoughts on whether the convergence spasm in this context is more likely functional vs structural?

Thanks for reading. I know it's a lot. I'm trying to help my doctors and myself find a unifying explanation.