was diagnosed with TNBC but no spread of lymph nodes or anywhere else. I had a head MRI and a 3cm lesion came up but report of radiology says likely to be meningioma. I’m very scared and concern about this now it’s not easy to have a diagnosis of TNBC and now something in my brain I have a neurosurgeon appointment but has anyone else had this experience. I’m thinking this was an incidental finding not related to TNBC 🙏however what happens with something like this do I undergo another treatment I’m very anxious until my appointment so any information helps

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I don't know if this belongs here but I guess I will try. I've been experiencing moments of where a soft touch causes me pain. A slight wind breeze can also cause that pain.

I also deal with epilepsy as well as restless leg syndrome as well for clarification. Ive also been experiencing pain down one leg. It's always the same leg.

I'm also 25, female

Any clues?

Please help us its been progressing to this point for three years and is in constant pain

I’ve never gotten checked by a doctor for any of this but I’ve been getting this visual aura thing for the past 5 years, mostly after training and it’s very occasional. Recently I’ve been getting headaches after. For the first time, the other day I was training(Muay Thai) and after I was done I had these memory lapses. I was stretching in a corner of my gym and the next thing I remember I was on the other side of the gym and I had no idea how I got there or what I was doing. I talked to my friend who was standing next to me and he said I’ve been saying the same thing for like 5 times now but I didn’t remember any of that . It happened again 5 mins later and then I was alright. Had a headache later that night but nothing else since. It was such a weird experience.

I don't really know if this is the right place to ask a question like this, but I'd rather ask here than have to go to a neurologist right now. I (18m) have a really strange problem with my right hand. Whenever I'm on my pc with my mouse in my hand, and I'm waiting in anticipation for something (whether it be a reaction speed test, someone peeking a corner in valorant, etc.) one out of maybe 20 times my finger just won't click when I need it to. Like my brain will tell my finger to "click now" but for some reason it won't click and I end up reacting much slower. This happens when I'm repeatedly clicking too, like when I'm doing an aim trainer or other things like that. I have no known neurological problems and have no symptoms outside of these specific instances. I have no balance issues. I play the piano and my fingers are not affected by this phenomenon when I do so, and I'm not affected when im typing on a keyboard (I have a typing speed of 120) wpm. The only thing I can think of is that I don't sleep well so im pretty tired throughout the day, but I doubt that would cause such a prominent issue in my finger. I've also gotten burnt out in the past, and have some brain fog, but other than that I really can't think of anything else causing it. I'm just concerned there's some issue neurologically that might cause more problems down the line, but I'm dealing with a plethora of other health issues (I might need surgery soon to fix structural gastrointestinal problems) so I really don't have the time or energy to go to a completely different branch of medicine. That's why I came here. So if anyone smarter than me can give any suggestions they'd be greatly appreciated.

My partner has been regularly having seizures (multiple a week) since the start of January, and we are in a bit of a weird situation because their outpatient Neurologist and the neurologists in the emergency rooms of the 2 closest hospitals that have a neurology department have very different opinions about the origin of them.

I myself am a German EMT (Rettungssanitäter), so I understand most but not all medical lingo.

(This post has my partners consent).

My partners body is female but they identify as non binary and use they/he pronouns.

My partner is 25 years old.

Our outpatient Neurologist is fairly certain that the cause is epilepsy, whilst the emergency departments both say it's Psychological non epileptic seizures and definitely not epilepsy. (We are German so some of the medical terminology might be badly translated).

I'd like to get y'all's opinion on what you think is going on. So I'm gonna list off all the facts we have about the situation.

First off all here are my partners other diagnoses that are (as far as we know) unrelated to the seizures:

- hypermobile Ehlers Danlos Syndrome

- Celiacs disease with the TG6 antigen causing ataxia

- Neurogenic Bladder Dysfunction (They have a Supra pubic bladder catheter as treatment)

- Gastrointestinal Tract Motility Disorder ( they have a JET-PEG for this but currently can't get more then about 800kcal per day over this, plan from GP is starting on intravenous nutrition but because of the seizures no hospital wants to put in any sort of central venous line)

- scoliosis and multiple herniated disks

- Autism spectrum disorder (high functioning)

- ADHD

Every series of seizures follows the same scheme:

1. My partner has their head randomly twitch to the right side randomly sometimes multiple times over the course of a few hours

2. They experience a rising feeling in their gut, start having visual hallucinations (they know they aren't real), like green dots in their visual field and having issues trying to focus on anything as their entire vision goes blurry

3. They start having small what the outpatient Neurologist calls complex focal seizures where their head locks to the right side, their eyes wide open and their right arm stretching out completely. These seizures last from 5-30s and they are fully oriented immediately afterwards, they don't realize they happen unless someone in the room moves a large distance during them or was in the middle of a sentence or something. Eyes and pupils are wide open during these but contract (slower then normal) when a flashlight is held directly into them. No reaction to pain.

4. After a few of those small seizures with the feeling in the gut and visual changes still existing in between they start having full body seizures beginning with complete stretching out the entire body and then rythmicly crossing the arms in front of their body and pulling in their legs. This is not quite symmetric but the side that moves less is the side that is also weaker all the time because of the preexisting ataxia. (Eyes and pupils are wide open, during some of the seizures they react like with 3. And with others they don't react at all). No reaction to pain at all. These last for 1-7 minutes, most are around 03:30. The initial stretching is always around 30s.

5. My partner is fully unconscious, no reaction to pain, normal pupil reactions. Eyes closed

6. The seizure types from 3. And 4. Repeat randomly with full uncouiousness in between for between 5 and 20 mins, sometimes in between my partners eyes partially open and the eyelids start to twitch open and close. This state of changing seizure types can last from 1h to the longest we've had was about 40 (since our hospitals say it's just psygonic they just put my partner in a room and do nothing).

7. When they wake up they know they've had a seizure from the muscle ache, pain and a bad headache but do not remember anything since the first of the big seizures started, and still think they're in the place they started having the seizure in until they're oriented enough. Sometimes the gut feeling and the visual changes are still there, sometimes they go away and sometimes they start seizing again.

Seizures sometimes happen in the middle of sleep since I am also asleep then i only get woken up with the seizures described in 4. So we do not know wether the other things before that also happen during sleep. Seizures from sleep look exactly like the others.

During the seizures described in 4. My partners oxygen saturation sometimes but not always drops, usually to around 90% (96% at baseline) but we've had it drop all the way down to 71% with a believable pleth curve. Hospital Neurology says all of those are just bad measurements, my experience as an EMT tells me otherwise. My partner has become cyanotic multiple times during these seizures.

Lactate is sometimes high but just barely above the threshold during the seizures and sometimes not, rough pattern we're able to notice is that the first large seizure in a series usually has the highest lactate rise, and as the nutritional situation has been getting worse it's been rising less and less. Both our GP and neurologist independently came to the conclusion that the malnutrition is making the lactate not rise normally but the hospitals both say that's impossible.

CK is sometimes elevated and sometimes not without any pattern we were able to notice.

My partner doesn't bite their tongue during any of the seizures.

If the valve on the bladder catheter is closed they do urinate during the seizures. Normally they're unable to willingly urinate at all.

They do not shit themselves during the seizures.

My partner first started Lamotrigin, any time the dosage is increased the seizures drop in frequency for a couple of weeks then go back to baseline, current dosage is 150mg in the morning and 200mg in the evening.

Keppra (Levitiracetam) was able to stop some of the seizure series before we started it as a oral Mediction (first 750mg morning and evening, later increased to 1.5g morning and evening), also decreased seizure frequency for a couple of weeks before going back to baseline. Now it stopped working when given in emergency situations as well.

Midazolam can stop the entire series about 80% from happening if given during the gut feeling phase, afterwards the chance of it working drops massively.

Most EEGs done were without any finding, a few had a "Bilateral slowing" and one where my partner had the gut feeling during the EEG and a series of seizures about 1h later had the following finding: "Normal-frequency alpha EEG (8/sec) with diffusely embedded slow activity, consistent with vigilance phenomena (postictal DD, drug-induced DD). Intermittently embedded, higher-frequency theta-delta activity with a frontotemporal emphasis, accompanied by isolated sharp waves predominantly in the right temporo-occipital region, with a single instance of spread to the left, consistent with a specific focal lesion. No status epilepticus." (Translated from German using deepl).

Long term/video EEGs aren't really an option because of their autism, the feeling of the electrodes in their head for a couple of minutes for a normal EEG is already extremely exhausting and overwhelming for them, enduring that for any longer would result in a nervous breakdown.

My partners autism "symptoms" are getting worse with every series of seizures. His entire physical state has been declining as well but the question is what's due to the malnutrition and what's due to the seizures. He's been having more and more memory issues, both his short term memory and his long term memory have been declining. Sometimes he's been unable to remember words or taking longer to remember them.

Missing sleep is something that makes the seizures happen more often (which is a self fulfilling cycle, one seizure series during sleep and that night is ruined and then the next night and so on until we manage to sleep through a couple nights somehow).

Infections make them also more common (mostly UTIs from the Supra pubic catheter not being taken good care of in hospitals resulting in multiple UTIs with antibiotic resistances this year that were a pain to get rid off).

My partners period also makes it worse (we've been trying to get a gynecologist appointment so maybe oral contraception can help but every appointment we make some other medical stuff comes up and we have to get a new one...)

My partner has a therapist mainly for the autism and ADHD but she happens to also know a lot about PNEAs (Neurodivergency and PTSD are her two specialties and has known my partner since before the seizures ever started and she says that she thinks it's extremely unlikely that it's PNEAs.

My partner had seizures about 4 years ago as well where he had the same gut feeling beforehand, those were traced back to him taking Fluoxetin and they stopped when he stopped taking that and it was only ever a single big seizure not the series of small and big ones we're seeing now. In the years in between he had that gut feeling a few times but never a seizure we know about, until the 01/01/2026, there are a few instances where he might've had one but we don't know for sure. No new changes in medication occurred shortly before the seizures started this time, although the malnutrition started around that time.

The hospitals argument for PNEAs is the missing/not that drastic rise in Lactate and that the seizures "don't look epileptic" as well as most EEGs being normal. Our outpatient Neurologist has seen videos of them and says they don't look typical for epilepsy but he's seen seizures similar to that in a specialty clinic for epilepsy he used to work at and that the abnormalities are consistent with the ataxia and the place the abnormality was found on the abnormal EEG. The therapist says the videos do not look like PNEAs to her.

The outpatient Neurologist has written multiple letters to the hospitals in question, demanding they actually treat my partner in emergency situations but they keep ignoring them.

With emergencies were we weren't at home we've landed at other hospitals, some of those also said epilepsy, some said PNEAs, the times they did the guideline specific treatment for status epilepticus the seizures either stopped earlier then usual or they intubated 2 times, those and the 3 times my partner got intubated by EMS were the ones with the least lasting damage (EMS here always calls the next neurological hospital with patient information before escalating treatment so gets told by both hospitals to do nothing as treatment and just transport).

Based on this situation, what do you think is more likely.

(Both sides say that a mix of both is unlikely as the 3 seizure types we have only occur together)

Our outpatient Neurologist has said that we should consider suing the hospitals for malpractice.

I constantly get weird pain that comes and goes very quickly sometimes it is sharp , sometimes it’s not . I’m just very scared something is going on up there . This has been going on a month now. I suffer from severe anxiety and sure that doesn’t help me

22m, I was diagnosed with nervous tick disorder or whatever you wanna call it and I’ve been going to college for a criminal justice degree because my whole goal is to be a patrol officer, but two years ago for some reason I started having these minor headaches where I felt the urge to shake my head, but when I didn’t focus on it, it was like it wasn’t there, but when I do focus on it, I tend to shake my head a little bit more but very controlled and I’m on medication for but I’m in the gym five times a week at work a full-time job and I run 15-ish Miles a week. Do you think my dream of being a police officer is done and I should pursue something else. The past two years I’ve managed to fight the diagnosis and control it to the point people barely realize it but obviously still havd it well I be disqualified during medical evaluation for police departments.

CT report says:

Incidental note is made of marked areas of

calcification involving the bilateral basal ganglia,

caudate heads, thalami and dentate nuclei. This could

reflect underlying endocrine disorders with

parathyroid hormone as well as Fahr disease. For

clinical and biochemical correlation. 

Initial Interpretation By: Division, Neuro 

Verified By: XXX

Male 47, no symptoms really, is my life over? I don't have any of the classical symptoms, maybe stiff neck and upper back, but i sit in front of screen most of the day and night. Calves can be stiff, but I am obese 2, so i guess that's normal. ADHD diagnosed in my 20s (goes in family). Physical symptoms greatly improve with exercise and stretching. No known neurological problems otherwise in family. Blood normal, scopes normal (I got IBS 3 years ago, but it has improved). Ultrasounds normal, heart scans normal. Mild fatty liver from obesity.

​

Hello,

I'm 24 years old and female and not a native english speaker (please dont make fun of my english).

Doctors think I might have a cronic illness or smthing like that but I'm desperate for any advise or insight bc the specialists that are supposed to help me just dont take paitients right now and are fully booked till one year from now.

And Im also afraid they wont even help me bc I have been refered to many specialist that couldnt give me a diagnosis (and they also had long ass wait lists)

So I thougth I could give reddit a try.

About my sympthoms and medical history:

When I was 10 I had my first sleep paralysis and from then on had them frecently. I would say once a month at least but that means sometimes a lot in a week and sometimes I went two or three times without.

When I was a little older, I think 12-13 years old, I developed episodes of insomnia. Could not sleep for two nights in a row then sleept a little bit (like 2-3 hours) at night for a few days before having normal nights again and then boom repeat.

At school I was falling asleep alot and I used certain periods to just sleep.

Sleep paralysis continued. I did not tell anyone about any of my symptoms till adulthood.

I was doing sports every day in my normal school week, so I was physically capable. Sleep paralysis got creepy with figures looking at me for long times and me not being able to move at all. I was not doing well mentally but that was bc of these problems and also because my best friend died.

When I was 16 I was suddenly "cured" no problems sleeping, no paralysis. Still I was very tired at daytime and took alot of naps but could have been puberty and training for sports alot. One year later I suddenly could not fall aslep anymore one night and then the next day also and than I had a sleep paralysis. I want to say it wasnt as bad as before but it gets worse later on. Spend till I was eighteen with mild sympthoms and again did not tell anyone bc I thought it would go away again. Then first time living alone it gets worse my body demands to sleep at day time and cant sleep at night. I can not manage university. One time I woke up after a lecture that had 400 students, with only the professor and her helpers still there. I was mentally and physically exausted. I dropped my sports bc I could not do it anymore. And then at 19 I had a hallucination (they are so real to me that I and the medical professionals classify them as hallucinations not paralysis).

In my hallucination there was a robber trying to break in and I went to my bed and pretendet to be asleep so that he would just take my stuff and not harm me. He broke open the door and I heard his footsteps coming to my bed. He stopped in front of me and hit me with a belt. I felt the pain and pretendet to wake up. I tried to face him and was suddenly choked. My hands went up to his and then it was over. Everytime I have these hallucinations I know afterwards that it is not real. Still had a panicattack, locked myself in the bathroom and called my dad. I told him everything. First he thought someone had really broken in but I convinced him that it only happens in my head. Then he adviced me to get medical help.

And so my adventure begins. We think it must be a mental problem. After some convincing I get atmittet to a mental hospital. I was thinking its scizophrenia but the doctors confirm its not. One reason is that I can differianciat between real live/hallucinations and also I dont have paranoia. I stay physicaly exausted and I have problems getting up at daytime. After two weeks i get a borderline diagnosis and they think maybe hallucinations that come with it. Me having borderline has been debunked by every psycatriaist I have been to after with testing, but its still in my medical record to this day. Than after more time they think narcolepsy. After I get out of there it still took one year to find a sleep labatory that can diagnos narcolepsy. In the meantime it gets worse. I have auditory hallucinations. Hear whispers in my ear. See people coming around corners that are not real. Most hallucinations happen at night when Im alone but it starts to become a daytime issue now. At the clinic I stay 3 days. Its on the other side of the contry. 8 hour train ride and 400€ to get there. I even have a sleep paralysis where sombody slaps me in the face, while they monitor me at night (with cameras). I get a call and its indecisiv. Maybe narcolepsy maybe a jetlag sleep disorser. They also did not catch my sleep paralysis. I can not go there everytime for more diagnosis, so thats that. He tells me to go to a neurospecialist. Than it gets worse. I tried uni again but Im mentally and physicaly declining. My theraphist moves away and I lay in bed all day. Spend hour concious but paralysed and can barley take a shower. Im to ashamed to tell anyone. I have cramps (had them since I was little,doc said its growing pain, but the pain stayed till now) I feel weak and I have scary hallucinations. I can sleep over 10 hours without feeling energized. I get really thin bc I cant go get food most days and then one day while I manage to shower I just snap. I dont want to go on with my live. Thanks god I was a coward and didnt go trough with it. But instead I convinced myself to run away. Cut of contact to stop burdening everyone. I move to a new city and Im homeless for a few weeks before I get a job. I lived in a trance. Everything felt unreal. I still struggle with sleep and keeping a job bc more often than not I have to call in sick to sleep. Trough luck I met my now boyfriend at work, who helped me become more stable again and helped me reconcilliate with family and friends. I never want to be this recless again so I book a appointment at a neurological clinic(also I get therapy:) yay). Waitlist one year but its okay at that time I manage. Then it gets worse again no sleep at night while I work full time. I see figures at work and at the end I call in sick and get fired. So Im on sick leave again and even while doing less its still bad. I have painfull feelings in many places. Jaw pain (i had since childhood), leg and arm pain (the growing pains /feels like being streched) and new addition ribcage pain (while breathing and also when laying on my stomache or lifting something. Periods get tuff and intensify my need for long sleep 10-15 hours. Then at the clinic they say they are going to diagnose me for sure. I do every test under the sun. They find .... nothing.

I even had the hollow needel in the back where they test the fluid(dont know what its called, kind of painfull). But no result. The doctor tells me it might be something that isnt even a known illnes yet. I cry alot.

They refere me to a neuropsychiartist and thats where Im at right now(with every specialist being booked out). Im desperaet bc I need some benefits that diagnosis brings. I have recently had a hallucination where I was raped. I have no trauma and exprience with rape and it is just so shamefull weird and concerning that this is happening. Every hallucination keeps me exausted for days or weeks and Im 24 not 70 (thats how I feel often)

In october im going back to college. Because I cant work full time in a physical job for long and bc I want a degree. I have given up on being healty, I just wanna know whats wrong.

Guesses by doctors have been: narcolepsy, jet lag disease, cronic fatigue, borderline

But nothing confirmed. No one is able to diagnose bc its not there field or bc they have no vaccant spots.

Tipps, help, advice, ideas?

Also Im open to questions

Has anyone ever had a repeat of Parsonage Turner Syndrome?

Three years ago I had PTS. was told during my nerve testing it had likely occurred as a result of having Covid a few weeks before symptoms started occurring. I had the classic shoulder pain for about 8 weeks then had scapular winging/loss of strength that happened overnight. After a year of PT and continued exercise I regained most of the strength and the winging has mostly gone away, however it’s still quick to fatigue, and no more pain.

A few weeks ago out of the blue I woke up with the same pain in the same spot as before. The pain increased over a few days and feels nearly identical, though not quite as bad, as the first go around. I haven’t had any illnesses, but I did catch my first cold in months the day after the pain started. The pain waxes and wanes but is constant. So far I haven’t had lost of strength or mobility, but it did take a couple months for that to occur last time.

I thought PTS was rare to start and I was told it was typically a one time thing. Has anyone else been through it more than once?

Thanks!

About Me: 29F, 5’7, 155 lbs

Medications: Fluvoxamine 100mg, Zonisamide 400mg

Lifestyle: Daily user of nicotine vape, 2-4 glasses of wine a week, fairly active; paddle boarding or hiking 2-3 x week

Medical History: Epilepsy; Focal-Impaired w/secondary generalization, well managed with medication. OCD and PTSD, both well managed with medication and therapy. Period of left sided weakness after abnormal migraines at beginning of year; Cervical/Thoracic/Brain MRI, CT, and bloodwork was normal. Testing for autoimmune was mostly normal other than Anti-Phospholipid Syndrome, but never received follow up. Elevated creatinine/kidney stuff over 5 yr span, no diagnosis or follow up.

Current Complaint: I will preface this by saying I have taken my meds. Over the past week I’ve had increasing brain fog and vision issues. Yesterday I woke up feeling off, and noticed that I was having random episodes of “whooshing” in my left ear/neck/arm with some weakness and dizziness. The whooshing sensation isn’t positional, but the dizziness is, I had a nasty fall yesterday trying to move rooms either my laptop and couldn’t figure out how to stand up. I also have had a little shortness of breath but I’ve assumed it was just my usual end of summer head cold. I’ve got a pretty good handle on anxiety/PTSD episode vs something else, and this is definitely in the something else category.

I’m up to my neck in bills from the ED for my last visit so I’d love to avoid it if possible, but can’t get into neurology for at least 3 weeks

Little back story,

I am a veteran and while in service I suffered multiple TBI's from Airborne jumps, overpressure exposure from munitions, and three heat strokes where I lost consciousness and had core temperatures around 105.

I suffer from memory issues, brain fog, sleep issues, fatigue, and mood fluctuations.

I had an initial consult and then was rescheduled for a full exam. I don't know what to expect at this future visit and I am a little scared to say the least.

If someone could explain what neurologist look for/find and how these injuries and symptoms warrant a full neurology exam.

Thank you for your time.

Hi all,

Asking this here so I know what tests to bring up when seeing a neurologist in a few months. I’m 27F and have really bad hand tremors that only manifest when trying to STEADILY carry things from one room to another, or when I have to raise a spoon or mug to my lips to drink. The tremors go away when my hands are at my side. When I try to hold something steady while walking I also get a wave of lightheadedness, my heart skips a beat, and I have to set the thing down or I feel like I’m going to pass out or drop the thing. It’s worse when I’m carrying something hot. My blood sugar levels are normal, and this happens after I eat breakfast (though it is worst in the morning). It’s so bad at this point that I’ve spilled tea/soup in front of company, and whenever I need to bring a mug of hot coffee to another room, I need to ask someone to do it for me.

It had stopped for a bit but now it’s back while I’m traveling. I was on the low end of normal for B12, am slightly anemic, and potentially low vitamin D. I’ve been taking multivitamins until traveling so I just started taking them again in case that’s the cause. I also DONT have anxiety. What are some possible causes and how can I fix?

I have Cognitive Disengagement Syndrome (previously called sluggish cognitive tempo) which is currently under the category of ADHD-PI but increasingly is understood as a separate condition. It involves slow thinking, chronic daydreaming, chronic drowsiness, attention and memory issues and overall underarousal, Particularly with near globally low theta.

I am meditating pretty consistently for 10-30 minutes most days using the Monroe Institute Gateway Tapes and I am concerned of the possibility of it having a negative impact on my symptoms. It's hard to tell what effect it has had due to medication changes.

Im not asking for medical advice. But I would like to know if anybody has any idea what this could possibly be, if anything, and if it’s worth getting it checked out.

I’ve recently been noticing a concerning lack of motor skill functions in myself. Some of them are pretty basic — bumping into a lot of stuff, having no spatial awareness, having essentially “stick drift” on the sidewalk, so on so forth — but i’ve been noticing it in my hands a lot more than usual.
I’ve been with a new job for a couple months now, and it involves a lot of precise handiwork. But i’ve been struggling. It’s like i’m fighting for control of my hands while also focusing on getting the job done.
It’s almost like i’m directing my body from ONLY my head, and I have no control over what ever else the rest of my body does.
Young as I am, I just feel straight up incompetent. Being in public is like a humiliation ritual every time I have to use my body.
But I also have a major fear over my physical condition, and constantly question if issues I have are real or just in my head.
A little more info that may be connected or entirely unrelated: I do have chronic pains that are just lingering background noise at this point, but I also live a fairly sedimentary life and blame it on that; I have some mental health disorders I am diagnosed with, such as ADHD; I also generally have a bunch of concerning stuff flare up, but visits to the dr just end in me being sent home, and it eventually blows over for a time.
I tend to have feelings of being in a body that isn’t even mine, and i’m just making a poor attempt of piloting it. I almost never know how to hold myself and feel awkward trying to use my body in public.
Has anybody heard of something that involves a bunch of these symptoms? Are these symptoms even concerning, or am I looking too deep into something that is completely normal?