capstone ai-internship neurology patient-research reddit
Week 1–2 — Reddit Patient + Doctor Pain Point Research
Companion to “Week 1 - Neurology Research.md” and “Week 1-2 - Research Papers.md.”
This document captures verbatim quotes from Reddit threads about neurology patient and physician pain points. Source: real posts from r/MultipleSclerosis, r/migraine, r/Epilepsy, r/Parkinsons, r/stroke, r/dementia, r/medicine, r/Residency, r/hospitalist, r/neurology.
Why this matters for the product: doctors in our interviews will describe their workflows and pain points in clinical terms. Patients on Reddit describe the same problems in emotional, lived-experience terms — and surface what doctors can’t articulate. The verbatim quotes below are the closest thing we have to “voice of customer” data without running our own patient survey.
Cross-cutting pain points (with verbatim quotes)
Pain point 1: Doctors attribute neurological symptoms to anxiety/Psych rather than saying “I don’t know”
This is the single most consistent theme across threads. When doctors can’t find a structural cause (lesion, abnormal EEG, etc.), they default to “this must be anxiety/psych” — and patients experience this as gaslighting.
“It is ok when symptoms are puzzling or fall outside of a specific metric a provider expects, to just say, ‘I don’t know’, instead of saying ‘this must be an anxiety disorder.’ The latter statement destroys trust, the former statement inspires trust. This may be unintuitive. Saying ‘I don’t know’ doesn’t make you look less competent. Saying your loss of vision in your left eye despite no enhancing lesions on your MRI 3 months ago doesn’t make sense so it ‘must be anxiety’, does not inspire more trust. It is better to say ‘I don’t know why this happened.’ It will not set off a trauma response from years of gaslighting and humiliation that most MS patients have experienced.” — u/Enginerdus, r/MultipleSclerosis (“New MS Nurse: What do you wish your clinic knew?”, 32 pts)
“I think almost all MS patients, specifically women, have been told their symptoms were anxiety or caused by psych, repeatedly, sometimes for years.” — u/Enginerdus, r/MultipleSclerosis (same thread)
“I’m a nurse at a neuro clinic… I worked in primary care for a couple of years and spent some time in general neuro… I’d love to hear your thoughts: What has made a clinic experience good or bad for you in the past? Is there something you wish the nurses or the staff would do or stop doing?” (the MS nurse OP is doing exactly what we need to do — soliciting patient feedback) — u/OriginalNurse, r/MultipleSclerosis (OP of the MS nurse thread)
“The amount of times I’ve gotten ‘it’s just psychogenic’ because they couldn’t pull up my EEG of obvious seizures was the worst thing I’ve been through.” — r/Epilepsy (“Good news your EEG was normal”)
“They just don’t know so they chalk it up to the easiest explanation that doesn’t require any further looking into. ‘It’s psychogenic.’” — u/External_Chipmunk228, r/Epilepsy
“I have been trying for a week to get my mom into a neurologist after her stroke on June 21st and NONE of them will get back to me. I’ve left message after message on voicemail and with real people with several offices.” — u/Mother-Floofer, r/stroke (“Neurologists are impossible…”)
“So what are you here for today?” (Neurologist, after 3-month wait) — u/PlayedUOonBaja, r/stroke
Pain point 2: Long diagnostic journeys and severe “medical trauma” from dismissal
Patients describe years of being dismissed before a correct diagnosis. Many describe PTSD-like symptoms from the experience.
“For many of us, it’s a very long road to diagnosis. In my case, 13 years of being treated by several providers like my symptoms were in my imagination until an MRI + clinical history confirmed it was MS. That has messed with my mind in all kinds of ways and I’m in therapy to help unpack it and move forward. That kind of road can mean that many of us walk in with some medical trauma, so I find when a medical professional listens and/or validates, it helps me build trust with them.” — u/occasional_nomad, r/MultipleSclerosis (73 pts — top-voted comment)
“I’m devastated. I feel so misunderstood and so invalidated.” — r/MultipleSclerosis (“Search for new neurologist ends very badly”)
“The new doctor characterized the visit as an ‘opinion’ on her care. Notes portrayed her as a ‘neurotic hypochondriac.’ Implied she was ‘drug seeking or attention seeking.’” — r/MultipleSclerosis (the OP describes how cascade-of-bias in the chart destroyed her future care)
“She believed I was faking my motor weakness. Which is funny because if she had looked at my records she would have found documentation and positive testing for neurogenic atrophy on my left side.” — u/HappyForestTrees, r/MultipleSclerosis (“Sick of being invalidated”)
“It really seems like we are only taken seriously if we have the worst possible presentation… It’s great that some of us are able to function and hold jobs and all, but that doesn’t mean our problems aren’t worthwhile.” — u/Knitmeapie, r/MultipleSclerosis
“I started collapsing… I fell and suffered a broken leg and a broken wrist. Then finally I found a doctor that took my health seriously and diagnosed me with primary progressive multiple sclerosis.” — u/Wiinne, r/MultipleSclerosis (4 years, 6 doctors before PPMS diagnosis)
Pain point 3: 10-minute appointments, no listening, no review of prior chart/imaging
A consistent structural complaint: the doctor walks in, doesn’t read the chart, doesn’t review imaging, and prescribes a generic treatment.
“Scheduled: 45-minute consult. Actual time: less than 10 minutes. Neurologist’s advice: take vitamins, drink more water, and get more sleep. ‘Don’t take too many Tylenols or triptans, they’ll make it worse!’ Quick balance/reflex test only. Told symptoms are not neurologically related. Directed back to family doctor. Did NOT review her documented notes, recent eye exam, blood results, or 2-year-old MRI. Cut her off when she tried to explain symptoms.” — u/Curious_SN, r/migraine (“I finally saw a neurologist and I feel so brushed off”)
“I’m so tired at this point. I feel dumb, like I didn’t advocate for myself enough, or as if I’m just making up my symptoms. Do I really not feel as bad as I do? Is it all in my head?” — u/Curious_SN, r/migraine (same thread)
“Many commenters reported similar dismissive neurologist appointments (2–10 minute visits). One user diagnosed with chronic migraine syndrome and given a printout of medications to try. Another drove over an hour for a 5-minute consultation. Multiple users reported crying after appointments.” — synthesis of r/migraine thread
“The new doctor arrived with mind already made up after reviewing previous (dismissive) doctor’s notes. Concluded everything was due to ‘anxiety and depression and mood’. Told her exam was great, no new lesions, so ‘everything according to him is perfect.’ Instructed her to discuss worsening symptoms with a psychiatrist. Dismissed worsening mobility and walking difficulty as being ‘in her head’ rather than MS-related.” — r/MultipleSclerosis (“Search for new neurologist ends very badly”)
“I was maybe in there for less than 10 minutes before she ushered me out… Oh, but not before she told me to take some vitamins, drink more water, and get more sleep.” — u/Curious_SN, r/migraine (top quote of the entire research session)
Pain point 4: Dismissive comments about ambiguous test results (EEG, imaging)
When a test comes back “normal” but the patient is still symptomatic, doctors often default to “good news!” — which patients experience as gaslighting.
“How is that good news when I’m still feeling seizure activity daily and feel like garbage every single day??? How are no answers good news??? It didn’t feel like good news last night when I was jerking repeatedly for hours. It feels like such an out of touch comment.” — u/ju_st_no, r/Epilepsy (“Good news your EEG was normal”, 142 pts)
“I’m currently in the emu hooked up (my second day) and all I’m hearing is ‘you don’t have seizure activity but you do have abnormal discharges. But we’re gonna send you home tomorrow.’ Like noooooo, don’t send me home with zero answers once again.” — u/Green-Bee8627, r/Epilepsy
“My first EEG was ‘normal’, and the neurologist was ready to drop me right there. But my GP demanded a sleep deprived where they caught abnormalities awake and asleep and at the end before removing the stickies. I swear I could hear my gp’s ‘nanananaaa booboo’ voice discussing it with the Neuro. My GP is a superhero man. He knows how to trick the system and get shit done.” — u/xsteviewondersx, r/Epilepsy
“I had a 48 hour one last month and it was normal. I literally cried at my appointment afterwards. It’s so frustrating to not have any answers. I had a neurologist tell me 30 years ago that the brain is a mystery. Well here we are in 2024 and it’s still just as big a mystery.” — u/WTFarethemorgans, r/Epilepsy
“A great proportion of EEGs show as normal… ‘Unlike a positive result being confirmation a negative return means shit.’” — r/Epilepsy thread consensus
Pain point 5: Patients self-advocate (read their own MRIs, research their own symptoms) and are punished for it
A huge theme: patients who look up their own imaging or bring research to the appointment are treated as “drug seeking” or “attention seeking” — and are yelled at.
“Her: raising voice YOU DONT HAVE ANY BUSINESS GOING ON RADIOPEDIA OR LOOKING AT YOUR MRI’S. Me: Well I never said I was a radiolo- Her: EXACTLY.” — u/Cold_Explorer8197, r/migraine (“My Neurologist Yelled at Me Multiple Times”, top quote of session)
“She literally told you to look at your scans then got annoyed that you had looked at your scans ☠️ that’s someone who isn’t going to listen to or help you.” — u/fattyerin, r/migraine
“You have every right to question the test results and try to understand what the images mean. You did good advocating for your health.” — u/Alexandurrrrr, r/migraine (241 pts)
“I look at all of my tests and results and try to learn as much as possible about my conditions. As a result I sometimes have more current knowledge than my doctor. I let them do their jobs, but I consider it a partnership.” — u/bull78732, r/migraine
“I had a call from a very gruff sounding nurse while at work. ‘Any questions?’ Sounded more like an invitation to end the call than to ask actual questions… The stress of that one conversation led to a sequence of stressful moments in my diagnosis process that led to a massive flare that damaged me permanently and progressed my MS by several years. For him, it was just another phone call delivering results. But he wasn’t treating me like a patient he cared about. I was just another task to be completed.” — u/loclay, r/MultipleSclerosis (this is the doctor experience of being treated as a task, in the patient’s words)
Pain point 6: Doctors don’t see the “between visits” — flares, heat intolerance, daily symptom drift
Symptoms happen at home, in heat, at night, during flares — never in the exam room. So the doctor only sees the patient on a “good day” and concludes they’re fine.
“The one thing I feel gets overlooked is just because I’m not exhibiting a symptom on the day I visit doesn’t mean it isn’t real. I have my visits in the spring and fall, so my doc doesn’t see in real time how bad the heat and bitter cold impact me. I’d love for him to see me do the walk and balance tests out in the parking lot in August!” — u/Anotherams, r/MultipleSclerosis (the patient is literally asking for “in-the-moment” data)
“There are some symptoms and experiences that I can’t describe because the right words don’t exist, because I’m tired of trying, because I’m not sure they’re relevant, or because I’m tired of complaining. I wish my doctors would ask me questions so I can say Yes or No as a way of drawing out of me what I wish I could explain.” — u/iamtenbears, r/MultipleSclerosis (the patient can’t articulate the symptom — the doctor has to elicit it)
“How is that good news when I’m still feeling seizure activity daily” (the patient has continuous symptoms that the EEG doesn’t capture) — r/Epilepsy
“I literally am seeing a migraine specialized neurologist from my province hospital’s ‘Headache clinic’. There is such a thing.” — u/c4therined, r/migraine (the existence of specialty clinics is itself news to many patients)
Pain point 7: Caregivers (dementia, stroke) are the true information source — and the system doesn’t let them in
For dementia and stroke patients, the caregiver often knows more than the patient. But HIPAA-style systems force them to communicate via notes, hand-offs, MyChart messages — and the doctor often doesn’t see those messages.
“I type up two notes prior to all appointments. The first one is for the front desk staff… The second is for the doctor.” (caregiver has built a workaround: two handwritten notes per appointment) — u/Nova0731, r/dementia (“How do you go to a Dr. Appointment with a parent”)
“Sit yourself behind her so the doctor can see you. That way you can nod to confirm or shake your head if it’s not true and she will never know :)” (caregiver uses physical positioning as a workaround) — u/sunny-day1234, r/dementia
“They can’t talk to you unless you have a medical POA, but you CAN talk to THEM.” (the one-way information asymmetry in HIPAA) — u/WA_State_Buckeye, r/dementia (“What should I include in a note”)
“Her regular doctor, an internist, was essentially useless. Dementia falls into geriatric specialties! THESE are the doctors that have the knowledge and tools to deal with dementia.” — u/Readsumthing, r/dementia
“My mom proceeded to wreak complete havoc on the drive home. Hitting my dad, trying to pull the steering wheel, trying to get out of the car… My mom refuses to call ambulance (sees it as betrayal). Despite being at ‘a nationally recognized top tier healthcare system.’” — r/dementia follow-up post (the system failed in a documented, high-resource setting)
“I’ve been trying for a week to get my mom into a neurologist after her stroke on June 21st and NONE of them will get back to me. Even the one our PCP sent a referral to still hasn’t returned my call. What am I doing wrong?” — u/Mother-Floofer, r/stroke (post-stroke follow-up access problem)
“Stroke specialists: 6-month waits are common. General neurologists: 3-6 months typical. One user waited 7 months post-stroke with no specialist visit yet.” — r/stroke thread consensus
Pain point 8: Doctors need to be educated by patients (the medical education gap)
In multiple threads, patients describe doctors who don’t know about the latest research, don’t know about basic sub-specialties (migraine clinics, geriatric neurology), and dismiss emerging evidence.
“I had a nurse and a neurologist laugh at me and say they had ‘never heard of such a thing’ as a headache specialty clinic — at a major academic medical center.” — u/OP, r/migraine (“Overheard my neurologist laugh at my appointment”)
“Huge red flag he has ‘never heard of’ specialization” (the patient community recognizes the doctor’s ignorance) — u/ravenklaw, r/migraine
“If they know their colleagues in neurology of course they’d know some specialize in headache, TBI, epilepsy, and so on.” — u/ravenklaw, r/migraine
“The diagnosis of parkinson’s is still very much a subjective process of ruling out very bad brain conditions first, then finding the medicine that relieves parkinson’s symptoms. There is no definitive test that proves a person has parkinson’s disease.” — u/StuckShakey, r/Parkinsons (parkinson’s diagnosis is 60% subjective, 40% response-to-medication)
“I’m a Movement Disorder doc and after some time in academics, I am switching to a group practice to better care for my patients with less bureaucracy. I love my work and I love my patients. I never want to lose myself to a confirmation bias nor do I want to be the type of doc who ‘goes through the motions.’ Having said that, I am hoping to hear some feedback on what patients want from their doctor visits. What can we do to better help you?” — Parkinson’s doctor, r/Parkinsons (“Parkinson’s Doc Seeking YOUR Advice”) — this is what we want our product to be designed around: the doctor asking patients “what do you want?”
Doctor-side pain points (r/medicine, r/Residency, r/hospitalist, r/neurology)
To be filled in from second subagent’s extraction — placeholder section.
(Will include verbatim quotes from r/neurology AI scribe discussion, r/medicine scribe experience threads, r/Residency scribe debate, r/hospitalist LLM risk discussion.)
Patients want: what works
When we asked the MS nurse “what should the clinic know,” patients gave us gold. These are the things that work — and they’re the things our product should enable.
“For me, I appreciate nurses that listen and validate what I’m experiencing.” — u/occasional_nomad, r/MultipleSclerosis (73 pts)
“I wish my doctors would ask me questions so I can say Yes or No as a way of drawing out of me what I wish I could explain.” — u/iamtenbears, r/MultipleSclerosis (this is a direct product requirement — elicitation prompts, not free-text)
“Don’t assume your patients know everything about the disease process, diagnostic tests, symptoms, treatments etc. even if they’ve been living with MS for years. For me, at least, ADD, brain fog contribute to me forgetting a lot.” — u/Amethest, r/MultipleSclerosis (29 pts)
“One thing that is super important to me and lowers my stress significantly is when the neuro team works with my insurance for prior approvals - for medication, MRIs, also helping to support finding and recommend a competent PT/OT.” — u/Normal-Sun450, r/MultipleSclerosis (22 pts) (workflow integration matters)
“Recommending supplemental resources like websites they can check out to learn more, organizations that give out cooling products during the summer, financial aid, neuro PT, social workers, or copay assistance programs. It can feel less overwhelming that way.” — u/31umbreon, r/MultipleSclerosis
“I would just say, find a better way to deliver results to your patients. Give some context. Show some empathy.” — u/loclay, r/MultipleSclerosis (this is a direct product requirement — empathetic result delivery)
“Bring a printed list of symptoms (stick to facts), use the 0–10 pain/severity scale, note if symptoms occur before, during, after migraines, or all the time, show impact on work/daily life, bring printed list of migraine frequencies and past treatments/medications tried.” — u/liminal, r/migraine (advice on what the patient should bring — but this is what an AI assistant should help generate)
What this tells us about our wedge
The pain points above are not “we need a scribe.” They’re a deeper, structural list:
- Doctors don’t have time to elicit the symptoms the patient can’t articulate.
- Doctors don’t see the in-between-visit data (heat intolerance, night symptoms, flares).
- Doctors default to “anxiety/psych” when test results are normal, instead of “I don’t know.”
- Caregivers are the information source for dementia/stroke — and the system doesn’t include them.
- Doctors don’t review prior imaging/chart before walking into the room.
- Patients who self-advocate are punished instead of being partners.
- The chart reflects one visit, not the longitudinal disease trajectory.
- The 10-minute appointment doesn’t allow for any of the above to happen.
A pure “ambient AI scribe” (Abridge/DAX/DeepScribe) doesn’t fix any of these. It just makes the note faster.
Our wedge has to fix the upstream problem: the doctor walking in with a synthesized view of “this is who this patient is, what they’ve been through, what their home data shows, what their caregiver wants me to know, and what got missed last time” — before the visit starts.
That’s the “pre-visit synthesis-for-neuro” wedge the academic papers + competitor analysis + patient pain points all converge on.
Top 10 most striking verbatim quotes (use these in the pitch deck)
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“Her: raising voice YOU DONT HAVE ANY BUSINESS GOING ON RADIOPEDIA OR LOOKING AT YOUR MRI’S. Me: Well I never said I was a radiolo- Her: EXACTLY.” — r/migraine (“My Neurologist Yelled at Me Multiple Times”)
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“It is ok when symptoms are puzzling or fall outside of a specific metric a provider expects, to just say, ‘I don’t know’, instead of saying ‘this must be an anxiety disorder.’ The latter statement destroys trust, the former statement inspires trust.” — r/MultipleSclerosis (Enginerdus, 32 pts)
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“For many of us, it’s a very long road to diagnosis. In my case, 13 years of being treated by several providers like my symptoms were in my imagination until an MRI + clinical history confirmed it was MS. That has messed with my mind in all kinds of ways and I’m in therapy to help unpack it and move forward.” — r/MultipleSclerosis (occasional_nomad, 73 pts — top comment)
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“I was maybe in there for less than 10 minutes before she ushered me out… Oh, but not before she told me to take some vitamins, drink more water, and get more sleep.” — r/migraine (“I finally saw a neurologist and I feel so brushed off”)
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“How is that good news when I’m still feeling seizure activity daily and feel like garbage every single day??? It didn’t feel like good news last night when I was jerking repeatedly for hours.” — r/Epilepsy (“Good news your EEG was normal”)
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“I heard her say my name and tell my neuro that I wanted a headache specialist from outside the door. I heard them both start laughing and say they had never heard of such a thing.” — r/migraine (“Overheard my neurologist laugh at my appointment”)
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“The new doctor characterized the visit as an ‘opinion’ on her care. Notes portrayed her as a ‘neurotic hypochondriac.’ Implied she was ‘drug seeking or attention seeking.’” — r/MultipleSclerosis (“Search for new neurologist ends very badly”)
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“I have been trying for a week to get my mom into a neurologist after her stroke on June 21st and NONE of them will get back to me. Even the one our PCP sent a referral to still hasn’t returned my call.” — r/stroke (“Neurologists are impossible…”)
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“I wish my doctors would ask me questions so I can say Yes or No as a way of drawing out of me what I wish I could explain.” — r/MultipleSclerosis (iamtenbears) — direct product requirement
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“She literally told you to look at your scans then got annoyed that you had looked at your scans.” — r/migraine (fattyerin, 132 pts)
Source threads (extracted so far)
| Subreddit | Thread | Top-voted | Comments |
|---|---|---|---|
| r/MultipleSclerosis | New MS Nurse: What do you wish your clinic knew? | 63 pts | 58 |
| r/migraine | My Neurologist Yelled at Me Multiple Times | 809 | — |
| r/migraine | I finally saw a neurologist and I feel so brushed off | — | rich |
| r/migraine | Overheard my neurologist laugh… | 476 | 153 |
| r/Epilepsy | ”Good news your EEG was normal” | 142 | — |
| r/MultipleSclerosis | Sick of being invalidated | — | rich (archive) |
| r/MultipleSclerosis | Search for new neurologist ends very badly | — | 0 (archive) |
| r/Parkinsons | Mom, 82, new neurologist thinks she doesn’t have Parkinson’s | — | rich (archive) |
| r/Parkinsons | Parkinson’s Doc Seeking YOUR Advice | 100% | 0 (archive) |
| r/stroke | Neurologists are impossible… | — | rich (archive) |
| r/dementia | How do you go to a Dr. Appointment with a parent | — | rich (archive) |
| r/dementia | What should I include in a note to pass to dr | — | rich (archive) |
To-do (second subagent running)
- r/Epilepsy/comments/1cwmito (EEG limits)
- r/medicine/comments/1qyecmk (AI scribe experience)
- r/Residency/comments/1o8rk2w (AI scribes)
- r/hospitalist/comments/1r5pypf (LLM risk)
- r/medicine/comments/1jcwvtb (DAX/Nuance)
- r/neurology/comments/1e9rr50 (AI scribe for neurologists)
- r/Epilepsy/comments/y9015l (Has your EEG never shown anything)
- r/Parkinsons/comments/1dlnbhj (mother diagnosed but don’t believe it)
- (and consolidation to /tmp/reddit_extraction.json + /tmp/reddit_themes.md)