5 ms·

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 und

• code_duck 4mo ago
  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.
  • OkayPhysicist 4mo ago
    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.
    • forlorn_mammoth 4mo ago
      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 4mo ago
        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?
        • zdragnar 4mo ago
          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 4mo ago
            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.
        • anakaine 4mo ago
          It is such a standard panel its not funny. That said, a psychologist is not an MD and cannot order labs, typically.
          • code_duck 4mo ago
            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 4mo ago
              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
        • code_duck 4mo ago
          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.
    • code_duck 4mo ago
      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.
  • gedy 4mo ago
    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 4mo ago
      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.
      • wpollock 4mo ago
        This. Today, well-meaning doctors cannot spend more than 5-10 minutes between seeing patients. Medical shows on TV show teams of physicians working on one or two patients per week. The reality in my part of the world is that each doctor sees 10 or so patients each day, and are not available for phone calls. (Even in 2026 my parents can reach their doctors by phone, and they spend the time to chat. But they are in New York and I live in Florida. ) I have seen my current PC doctor for 25 years now and he knows me well enough to spot significant changes. But he's retiring in a few months and I have no idea how to find a new doctor. My current doctor has no recommendations for me. (I'm not asking here for any if that's what this sounds like.)
  • bozhark 4mo ago
    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
  • kvgr 4mo ago
    Once you have psych. diagnosis its over, doctors see you throught that lens. Ah yes, he has anxiety, of course his symptoms are psychosomatic and there is no need for more testing. My uncle was schizophrenic, medicated and living OK life after years and years of delusions. He also had untreated diabetes for years, but was on the right track. He went to doctor with pain in belly, they sent him home and told him nothing is wrong, couple days after he died from ruptured gallbladder...
    • code_duck 4mo ago
      What I learned is also that often doctors will shrug at an unclear illness, and wait for it to become severe enough that it's obvious. Once I had 650 glucose and a A1C of 12, they couldn't say it was just a psych problem.
• sheepolog 4mo ago
  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.
  • WarmWash 4mo ago
    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 4mo ago
      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 4mo ago
      [dead]
    • sheepolog 4mo ago
      All the more reason to have better diagnostic tools (not to mention faster imaging)! All humans are fallible; I hope one day diagnosis is the easiest part of a doctor's job.
      • haldujai 4mo ago
        You’re assuming a diagnostic test can be designed for 100% accuracy and this is not possible as disease states are spectrums not discrete categories. “Normal ranges” in lab values are just confidence intervals of population means which by definition that some normal people will have abnormal values and some patients with a disease will have normal values. The same is true for imaging. For example we use size criteria a lot. There is nothing different about 4.1 cm adrenal nodules and 3.9 cm nodules to explain why the former gets surgery and the latter gets called benign other than pre-test probability and acceptable false positive and false negative rates, whether this is measured by a human or AI.
• switchbak 4mo ago
  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.
• deleted 4mo ago
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• burntsushi 4mo ago
  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.
  • epcoa 4mo ago
    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.
• anotherevan 4mo ago
  > including an appalling “it’s all in your head” from her family MD at the time Oof. That one resonates so much for me - even living in a country with far better healthcare. There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system."[1] Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth. One of my kids has complicated health issues, pretty much from the time they hit puberty. If they hadn't had me (someone born with a penis) advocating for them and attending most medical appointments throughout their teenage years I'm pretty sure they would be dead now. My most appalling memory is a gastroenterologist who patronisingly told my kid with a diagnosed anxiety disorder which exacerbated awful gut pain from irritable bowel syndrome that, "If you weren't anxious all the time you wouldn't be in so much pain." We both had a good cry in the car park after that appointment. It certainly set treatment of their IBS back a couple of years at least. (Fortunately after a string of bad ones, we found a GE that treated them with compassion, and not as a gastrointestinal tract with an annoying human around it.) Whew, yeah, touched a nerve there. So, medical misogyny. It's a thing. [1] https://australiainstitute.org.au/report/medical-misogyny-in-australian-healthcare/ https://australiainstitute.org.au/report/medical-misogyny-in...
  • haldujai 4mo ago
    > There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system." This is a loaded UK-centric policy/humanities term and I would suggest using sex/gender disparities instead which does not imply animus and is therefore much more useful for productive discussion. Implicit and systemic biases in medicine are very real and supported by ample data. > Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth. At least for the US this hasn’t been the case in clinical research for the past 15 years or so which in aggregate leans a bit more female than male if anything. Some specific fields still have sex disparity in clinical research for a variety of reasons but that’s the minority these days.
• cubefox 4mo ago
  > I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. Reminder that he is the one who is ill, not his wife.
• pygy_ 4mo ago
  Pseudo-exhaustive knowledge disorder (PEKnoD) is a meta-psychosis that afflicts most medical professionals. It's a plague.