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I was recently diagnosed with anti-NMDA receptor encephalitis

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

#151

Post by haldujai »

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…

> 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.

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

#152

Post by elliotbnvl »

forrestpitz wrote: post #119
elliotbnvl wrote: post #99

Earlier quoted context omitted.

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…

Not op but my wife has MCAS. The things that have helped the most are: Oral Cromolyn (helped sooo much with gi issues), and more recently she's started Ketotifen which is a systemic mast cell stabilizer that's seemed promising but is fairly new. She also tried Montelukast which was well tolerated but didn't make a ton of difference for her personally (but I know it helps a lot of people). Supplement wise DAO was the…

Thank you. This is good info.

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

#153

Post by tacticus »

russelg wrote: post #138
dzhiurgis wrote: post #121

Earlier quoted context omitted.

> 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.

In Australia, this is mostly because there are tax implications for not being a private health care member past the age of 31 when you earn over a certain amount. Our public system is great (and actually exists).

> In Australia, this is mostly because

it's an attempt to starve funding from the public system. (Howard was responsible for destroying the first universal healthcare system in australia before the later second attempt)

The private hospitals specialise in elective uncomplicated day ops because the returns from the medicare payment are better than complicated cases that get the same fixed payment. It's also why they transfer anything slightly complicated into public hospitals.

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

#154

Post by klipt »

Sharlin wrote: post #68
klipt wrote: post #17

Earlier quoted context omitted.

Your CDC figure is an average over all genders. Assuming hacker news readers are disproportionately men, the mortality rate is even higher, since men die younger than women on average.

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.

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

#155

Post by haldujai »

sheepolog wrote: post #128
WarmWash wrote: post #29

Earlier quoted context omitted.

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.

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.

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.

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

#156

Post by cgh »

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…

> even living in a country with far better healthcare.

FYI I’m not American. Your medical misogyny comment is dead on, in my opinion. This sort of thing can happen anywhere.

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

#158

Post by nextos »

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

What treatment did your wife receive? Did she improve?

Did doctors confirm Ehlers Danlos with genome sequencing?

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

#159

Post by anotherevan »

haldujai wrote: post #151
anotherevan wrote: post #136

Earlier quoted context omitted.

> 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…

> 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…

> This is a loaded UK-centric policy/humanities term

Yes, the implication of animus is the chief reason for my dislike of the term. The main failing of most alternatives is they don't roll off the tongue as easily or succinctly.

> 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.

Oh yes, I didn't mean to imply the situation isn't improving (and an overcorrection in research at this point in time is probably a good thing, IMO (if it is in fact happening, which I struggle to believe (but that's my issue))).

The body of knowledge in medical science is a lot older than 15 years though, so I would think it will take a lot of time and effort to equalise.

Thanks for your response. I found it constructive and informative to my own thinking.

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

#160

Post by anotherevan »

cgh wrote: post #156
anotherevan wrote: post #136

Earlier quoted context omitted.

> 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…

> even living in a country with far better healthcare. FYI I’m not American. Your medical misogyny comment is dead on, in my opinion. This sort of thing can happen anywhere.

Yep. Humans are gonna do human things anywhere you find them.

> FYI I’m not American.

Whoops. Guess that was an assumption on my part. Here I am, doing human things…

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