| ▲ | cgh 4 hours ago |
| My wife has a cardiac autoimmune disease that was similarly misdiagnosed (including an appalling “it’s all in your head” from her family MD at the time). We underwent a year of immense stress. Just days before her probable death, she had a pacemaker and defibrillator installed, which saved her life. I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal. |
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| ▲ | code_duck 4 hours ago | parent | next [-] |
| I had a much more common autoimmune disease, adult-onset Type 1 Diabetes (LADA), determined to be health anxiety by a very large, major renowned hospital who should have known better. It led to over a year of continued illness before finally I was diagnosed at an ER. I'm sure some people have psychosomatic or anxiety based illnesses, but it's rather grating to be told by a psychologist that you're worrying yourself to death when you are very, very sure that's not the issue. |
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| ▲ | OkayPhysicist 4 hours ago | parent | next [-] | | How did it take a year to diagnose diabetes? Are there symptoms of Type 1 that aren't downstream of blood sugar? I, some chucklefuck with some first aid experience, can figure out if someone is hypo/hyperglycemic by smell. | | |
| ▲ | code_duck 3 hours ago | parent | next [-] | | LADA comes on slowly compared to regular juvenile onset type 1. With regular T1, you'll be in diabetic ketoacidosis and hospitalized within 3 months. LADA can take a year or two, sometimes even longer. I had Celiac diagnosed a year prior, and many of the symptoms seemed the same - fatigue after meals, heartburn, other digestive issues - and that confused things. Plus I had terrible medical care for the first 6 months while I was losing weight and wondering what was happening. | |
| ▲ | forlorn_mammoth 4 hours ago | parent | prev [-] | | Adult onset. It can come on slowly (as in over the course of a year). And many downstream symptoms include mood changes. Hard to know it is blood sugar related if you don't test blood sugar levels. Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on. | | |
| ▲ | Scoundreller 3 hours ago | parent [-] | | That’s the bit I don’t get: isn’t glucose testing by the health care system fairly common with any sort of “I don’t know what’s going on, let’s order some labs and see what comes back” screening/testing panel? | | |
| ▲ | code_duck 3 hours ago | parent | next [-] | | I was told I had 'prediabetes' and actually got my own glucose testing kit. It didn't seem far off at that time, though, possibly because I was having such a difficult time eating anything. I didn't really know what to look for, though. Glucose being above 100 when I woke up? Over 180 a couple hours after eating? I tested a lot but didn't have any doctor support or interpretation. At the hospital, I saw a gastroenterologist who specialized in Celiac, because I had just been diagnosed with Celiac a year earlier and many of my symptoms seemed related to digestion. He absolutely should have done diabetes tests. On the last day of the 2 weeks I was there, he said "It could be type 1 diabetes... some people get that too" but didn't order any tests. When I was diagnosed at the ER another year later, my glucose was 650 (very high) and had been averaging 300 (it should be ~85). So yeah, the doctors were negligent, in my assessment. | |
| ▲ | zdragnar 3 hours ago | parent | prev | next [-] | | OP mentioned being told he was just worrying by a psychiatrist. They're used to seeing all sorts of psychosomatic issues caused by stress and anxiety. The old 'think horses not zebras' puts blinders on, especially when there's also claims that the US health system over-tests for things. | | |
| ▲ | code_duck 3 hours ago | parent [-] | | I told my gastro that I was on a very restricted diet. I had lost a ton of weight from not being able to swallow food and though it was related to Celiac or food allergies, and they really didn't listen to what I was saying. The psychologist told me that I was "so worried about gluten that I was starving myself", which was quite offensive, actually. I had been in phsyical pain every day for months and went from 180 lbs to 120 (at 5'10") until I found a liquid diet that worked for me and regained weight. I had no idea carbohydrates were an issue. |
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| ▲ | anakaine 3 hours ago | parent | prev [-] | | It is such a standard panel its not funny. That said, a psychologist is not an MD and cannot order labs, typically. | | |
| ▲ | code_duck 2 hours ago | parent [-] | | It's common to get a spot/random glucose test as part of a metabolic panel, but not that common to get an A1C or certainly auto-antibody tests, in my experience. | | |
| ▲ | Scoundreller an hour ago | parent [-] | | A1c has become a lot more common over the last 20 years… adoption of new standards can take a while in healthcare, even stuff that has existed for a while |
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| ▲ | bozhark 42 minutes ago | parent | prev | next [-] | | Had a piece of my spine severed (tail bone and some above it) and was told it was all in my head. Even the uncontrolled, daily falling. It’s wild how much of a practice medicine is but people take the first diagnostic opinion because their profession | |
| ▲ | gedy 3 hours ago | parent | prev [-] | | I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac. | | |
| ▲ | kashunstva 32 minutes ago | parent [-] | | I practiced medicine in the U.S. and am now retired. This is such a complicated problem, not insoluble; and I would not want to explain away failures of the system. I spent the majority of my career at a major tertiary referral center. One patient sent to me had all the signs and symptoms of Beçhet’s disease. To me it was obvious; but putting myself in the shoes of the rural primary care physician, who has never seen a case, I can imagine the constellation of presenting signs and symptoms would have been just a muddle. I can think of perhaps hundreds of similar cases. I’m sure I missed important findings in my career. I know it. Much of what is missing nowadays is the time to listen deeply to what the patient is telling you and to think about it. If you have even rudimentary medical knowledge + time + humility and a willingness to constantly revisit the diagnosis, any doctor will do OK. But it’s a tall order in 2026. I’m grateful to have practiced at an institution that afforded me the time to listen and think. I gather that many physicians now are suffering from exhaustion of curiosity and maybe empathy. |
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| ▲ | sheepolog 4 hours ago | parent | prev | next [-] |
| It's been super eye-opening to me as an adult how frequent misdiagnoses are. I understand it's good for a doctor to sound confident, but "confidently wrong" is imo much worse than "cautiously wrong". We really need better imaging/diagnostic tools that cut down on human bias; hoping for a star trek tricorder someday. |
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| ▲ | Aurornis 4 hours ago | parent | next [-] | | > It's been super eye-opening to me as an adult how frequent misdiagnoses are. I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim. That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations. An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too. This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem. | | |
| ▲ | fragmede 3 hours ago | parent | next [-] | | Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also charge the doctors to use this screening process. | | |
| ▲ | Aurornis 2 hours ago | parent | next [-] | | > and also charge the doctors to use this screening process. Why would a doctor pay another service to order labs for them? Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but likes the money. If someone opens a specialty clinic for an internet-popular disorder, they have a perpetual line of patients who will gladly pay for a doctor to tell them what they want to hear. | |
| ▲ | dzhiurgis 6 minutes ago | parent | prev [-] | | > Not to be a capitalist about it, but given the US health care system Whats that supposed to mean? Most countries have private healthcare too. Sometimes it is as popular as public i.e. Australia 45% is private vs 55% in US. |
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| ▲ | s5300 an hour ago | parent | prev [-] | | [dead] |
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| ▲ | amatecha 4 hours ago | parent | prev | next [-] | | Yeah, I've had to fight to get medication that the doc insisted "doesn't work" - had to cite actual studies that showed blatant results showing effectiveness. The way society has this widespread "appeal to authority" built in around doctors drives me crazy, because they are treated as if they are the ultimate authority on health/medical, but are often woefully under-educated about specific subtle details that can end up being critical to the management/prognosis of a health issue. I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us... | |
| ▲ | WarmWash 4 hours ago | parent | prev | next [-] | | The part that doctors see that individuals don't is the flood of people who are chronically freaking out over nothing. There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI. | | |
| ▲ | TaupeRanger an hour ago | parent | next [-] | | Right. For every example of a doctor missing a diagnosis, there 100 examples of that doctor correctly telling people that they are likely suffering from a temporary condition that will work itself out or not be resolved by any further testing or medicine. | |
| ▲ | s5300 an hour ago | parent | prev [-] | | [dead] |
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| ▲ | 4 hours ago | parent | prev [-] | | [deleted] |
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| ▲ | switchbak 4 hours ago | parent | prev | next [-] |
| I've heard so many stories, and have had so much recent close experience of those stories not ending on a high note. It's nice to hear that Burnt Sushi's and your wife's experience do sometimes end in a very positive way. |
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| ▲ | burntsushi 4 hours ago | parent | prev | next [-] |
| Ooof, really sorry to hear that. I'm glad she ultimately got the treatment she needed. In my case, the misdiagnosis up front was entirely reasonable. (EDIT: Well, maybe not. See below.) The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline. My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological. Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did. I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights. I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer. My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility. I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place. I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times. |
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| ▲ | epcoa 3 hours ago | parent [-] | | Absolutely not to defend what happened but that GAD diagnosis sets in motion the anchoring, because now you have an “established” (and recent) psychiatric diagnosis and it’s all too common that an ED is going to heavily prioritize this as a progression. EDs are just very bad in general about reconsidering a differential for a (new) chronic condition unless it’s flashing like a neon sign, especially when there is an easy enough dispo to reach for, transfer to psych in this case. But even worse, you already had an extensive outpatient workup to hang their hat on. From the history provided the history of a fall is the only thing mentioned that sounded like a slam dunk brewing neurological deficit, and it is not very specific, half the ED are people that fell. I’m sure you’ve read the MDM portion of the ED note, it may or may not give some idea of why neurological conditions were dismissed.
Very unfortunate. | | |
| ▲ | burntsushi 2 hours ago | parent [-] | | That is an interesting take that I hadn't thought of. Thank you for that perspective. I actually haven't been able to get the ED notes from that first ER visit yet. They are in a different system than Brigham and Women's, which made it super easy to read notes in their app. |
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