Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

I was recently diagnosed with anti-NMDA receptor encephalitis

burntsushi.net

Post reply on HN
Print view View original

181–190 of 271 posts

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#181

Post by rendaw »

tsoukase wrote: post #94

Very rare disease, expected to be misdiagnosed as psychiatric. I admit I would (neurologist here) But you were luckily treated by an excellent neurologic center. The lesson learned is that there are rare diseases (<1/10.000-100.000) but as they are so many, they form an important minority next to common ones (1/100-1000). Just don't forget them when data don't fit well. Such estimations is a hard dexterity of doctors…

I don't mean direct this specifically at you, but aren't there databases that can look up diseases by symptoms? Are doctors not trained to consult those, maybe after ruling out common causes? Why is forgetting relevant in this context?

I'm asking because I've had frequent encounters with doctors whose process seems to be, literally, "remember if there's anything like the described symptoms that I learned in medical school" which, if they were somewhat older, was probably 30+ years ago.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#182

Post by BobbyTables2 »

anotherevan wrote: post #136
cgh wrote: post #15

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.

> 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 amou…

As a Yank with practically every single demographic, physical, and financial advantage in his favor, I’ve been gaslit by about 8 of 10 specialists. Only car dealerships are worse.

Even obvious things like “I can’t move my left hand after 1 hr of light typing” were excruciating difficult to get diagnosed by “board certified” specialists with 20 years experience. It’s not that they were wrong —- they flat out weren’t even interested in making diagnosis nor conducting a simple test that could lead anywhere. Financial costs and insurance requirements weren’t the issue either.

“My chest hurts after walking slowly to the mailbox. ‘Well, you waited 1 month for this appointment, we’ll do an ultrasound in 2 months, discuss it 1 month later, and then maybe figure out next steps “

I cannot imagine a more dysfunctional aspect of modern society. The Department of Motor Vehicles is a paragon of efficiency by comparison.

Imagine if I told my boss the critical issue escalated by a major customer would be handled that same way…

There are a lot of bad software engineers but they tend to get weeded out since most are employees. Imagine paying them 2x-3x the amount with no direct managerial supervision and even more poorly informed customers. The name for this is “doctors”. The game is played by not trying to be great in medical practice - instead the strategy is only to be financially successful.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#183

Post by babhishek21 »

insaider wrote: post #180

I wonder how close this disease, and the similar ones in the comments, are to a general 'chronic fatigue sydnrome' diagnosis is. Which I've been dealing with for a decade. Definitely a strong autoimmune component to it... In case this might resonate with someone but from the 100s of tests i've done, the most significant result for me was a 5x normal renin, which led me to eventually try fludrocortisone, the first tim…

A decade of dealing with CFS sounds like absolute hell.

I saw a close friend decline from a 90%-ile athlete to having trouble getting out of bed within a span of 2 months, and it was heartbreaking. This is someone I looked up to in the gym, went climbing with, went on hikes with. Living in Spain, he did have a hard time getting a proper diagnosis, with doctors eventually settling on ME/CFS. It's been 2 years now and he is slowly on his way back to being functional; went back to his job and he can even do light exercise once a week now.

I am going to ask him if he was prescribed corticosteroids as part of his regime. I do remember during his early tests (I know because I accompanied him) that he did test positive for Mononucleosis antibodies, but he doesn't remember showing any symptoms at that time.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#184

Post by randerson »

Aurornis wrote: post #38
sheepolog wrote: post #20

Earlier quoted context omitted.

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.

> 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 h…

As someone who is currently going through the diagnostic process for MCAS with a specialist:

A negative Tryptase blood test doesn't mean you don't have it, it could just be that you're not having an active flare-up at the time. So they also prescribe high doses of H1 and H2 blockers and then you report whether symptoms have improved across 2 or more organ systems after a few weeks.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#186

Post by DANmode »

forrestpitz wrote: post #123
netsharc wrote: post #103

Earlier quoted context omitted.

At the risk of sounding like a cryptobro ("What about using a blockchain?"), did you ever try testing LLMs to see if they'd be able to diagnose it correctly? (I'm guessing you did the research before LLMs)

Not OP but anecdotally: ChatGPT diagnosed my wife's MCAS, POTS/Dysautonomia and Ehlers Danlos Syndrome before any doctor did (not for lack of trying on the doctor front). Once we had that direction we found the right providers and it's made a world of difference

It’s interesting the (consistent) list of conditions that one struggles to get an AMA doctor diagnosis for.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#187

Post by Obscurity4340 »

klipt wrote: post #154
Sharlin wrote: post #68

Earlier quoted context omitted.

On the other hand, my guess is that male HN readers are not a very representative sample in this respect. That is, they (we) are significantly less likely than average to engage in the type of risky behaviors that mostly explain the gender disparity.

The difference is mostly heart disease not "risky behavior". If anything the average software engineer is more likely to die of heart disease due to our sedentary lifestyles. Sitting on chairs is the real "risky behavior" in terms of health, although few people think of it that way.

Are you aware of any distinction between extensive sitting vs extensive reclining like on a divan?

My intution is there is a distinction besides the fact both are sedate behaviors

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#188

Post by insaider »

babhishek21 wrote: post #183
insaider wrote: post #180

I wonder how close this disease, and the similar ones in the comments, are to a general 'chronic fatigue sydnrome' diagnosis is. Which I've been dealing with for a decade. Definitely a strong autoimmune component to it... In case this might resonate with someone but from the 100s of tests i've done, the most significant result for me was a 5x normal renin, which led me to eventually try fludrocortisone, the first tim…

A decade of dealing with CFS sounds like absolute hell. I saw a close friend decline from a 90%-ile athlete to having trouble getting out of bed within a span of 2 months, and it was heartbreaking. This is someone I looked up to in the gym, went climbing with, went on hikes with. Living in Spain, he did have a hard time getting a proper diagnosis, with doctors eventually settling on ME/CFS. It's been 2 years now and…

Thanks man, yea I also have mononucleosis antibodies which I think caused it (EBV IgG and IgM) which I think was the trigger for me (Glandular fever). Seems like that virus in particular lingers and reactivates in many people.

My current line of research is into treatment for that, I've tried all the usual antivirals but they don't do much, but there's several new actual vaccines being developed which I'm trying to get into the trials for (in Australia).

Would be keen to know more about his story, thank you

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#189

Post by lukan »

Aurornis wrote: post #38
sheepolog wrote: post #20

Earlier quoted context omitted.

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.

> 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 h…

"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."

In your example of MCAS, the solutions seems simple, do a blood test first, before really involving the specialist?

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#190

Post by appplication »

DANmode wrote: post #186
forrestpitz wrote: post #123

Earlier quoted context omitted.

Not OP but anecdotally: ChatGPT diagnosed my wife's MCAS, POTS/Dysautonomia and Ehlers Danlos Syndrome before any doctor did (not for lack of trying on the doctor front). Once we had that direction we found the right providers and it's made a world of difference

It’s interesting the (consistent) list of conditions that one struggles to get an AMA doctor diagnosis for.

It’s because for whatever reason a large number of doctors do not fundamentally believe some of these conditions exist (especially with syndromes with no clearly understood underlying cause).

I could not tell you the number of doctors who have rolled eyes at the mention of ehlers danlos and hypermobility disorders.

Post reply on HN