111–120 of 271 posts
Earlier quoted context omitted.
Why did you breakup after everything?
The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)
This sounds horrifying. It’s one of those stories that makes me think in just how many ways our bodies or minds can break or malfunction in terrifying ways. Any one of us could, right now, carry a lethal tumor that hasn’t been discovered. Best of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.
CDC mortality tables [1] are kind of eye opening for those who don't realize how brief life is. Average age range on HN is probably in the 25-44 year old bracket. That bracket has an approximate mortality rate of 140/100k per year. HN has what, 5 million or so monthly users? So that means of all of 'us', it's expected that around 7,000 HN readers age 25-44, die each year. That's fairly close to 1 death per hour. [1]…
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.
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 t…
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
One thing that may be intriguing is that this is a relatively new diagnosis (first described in 2007). There's so much medicine to discover and we need to keep supporting a biomedical research enterprise that can find reversible treatments to disorders that would otherwise be difficult to treat (his symptoms, for example, would be thought of as a schizophrenia manifestation in another era) https://pmc.ncbi.nlm.nih.go…
Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years. The problem is accessibility. Tech grew largely because of how accessible the technology is. Biomedical research is still very difficult to get into, and as a result seriously curtails the potential progress we as a society could make. I don't know what the solution is but there's got to be an easier way to tinker…
We don’t have good ways to even start thinking about such simulations.
Earlier quoted context omitted.
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 t…
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.
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.
What have your experiences been with using AI for medical advice? Especially for such rare diseases I suspect that very little shows up in the training data. Personally I'm using AI only for work and only recently started using it for non-work non-coding stuff too.
My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…
I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking? I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm…
I have a blog post compiling all my research here: