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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

#211

Post by BrannonKing »

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…

I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.

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

#212

Post by BrannonKing »

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…

I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.

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

#213

Post by mog_dev »

BrannonKing wrote: post #210

The thing with all these autoimmune diseases: they have the same foundational problem. Their is something in the blood that doesn’t belong there and it resembles some part/cell of our body. Our body builds white blood cells to destroy this thing and inadvertently destroys part of the body. The important questions: what is it and how is it getting into the blood? The most likely way it gets into the blood is through t…

You write all these so confidently I hope you are ready for your nobel prize

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

#216

Post by Aurornis »

lukan wrote: post #189
Aurornis wrote: post #38

Earlier quoted context omitted.

> 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?

It’s a little more difficult because the blood test is supposed to be performed during a flare up, so it can be negative in an MCAS case if given at the wrong time.

Primary care doctors don’t want to gate the diagnosis so they’ll send the referral over and hope that the specialist will do the work of filtering out the likely and unlikely cases.

The everything-is-MCAS people on the internet use the fact that it can be negative at times in MCAS patients as a wedge to justify ignoring negative test results. In practice it’s not that hard to give someone a standing order for the test and have them get the blood draw when their symptoms flare.

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

#217

Post by Culonavirus »

mog_dev wrote: post #213
BrannonKing wrote: post #210

The thing with all these autoimmune diseases: they have the same foundational problem. Their is something in the blood that doesn’t belong there and it resembles some part/cell of our body. Our body builds white blood cells to destroy this thing and inadvertently destroys part of the body. The important questions: what is it and how is it getting into the blood? The most likely way it gets into the blood is through t…

You write all these so confidently I hope you are ready for your nobel prize

> Their is something

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

#218

Post by alfiedotwtf »

sfink wrote: post #129
ipaddr wrote: post #104

Earlier quoted context omitted.

Why did you breakup after everything?

Probably because life is not a fairy tale? I'll be heavily projecting here, but: Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job descrip…

> Doctors often fall into the trap of treating the disease and ignoring the patient

My brother last year went to the doctor with an ear ache. The doctor prescribed him some liquids and pills. Only after he left he realised the doctor never even looked into his ear!

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

#219

Post by jcgrillo »

burntsushi wrote: post #11
philipportner wrote: post #9

Earlier quoted context omitted.

> My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything! I feel like there's a burntsushi joke hiding in there somewhere. All the best Andrew.

There is actually haha. I've always hated sushi. And sushi is now on my shortlist to try again. I can't wait. (My handle comes from graffiti I found on the booth of a hot dog stand in Worcester MA called Coney Island[1]. I thought it was a cute oxymoron and adopted it on a silly whim. I only later learned that some sushi is indeed cooked.) [1]: https://coneyislandlunch.com/

Wow! Great to see Coney Island is still there.. I was last there ca. 2007.. Also that's an awesome origin story for your internet handle.

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

#220

Post by TacticalCoder »

burntsushi wrote: post #35
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.

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…

Good they eventually found out... Falling doesn't feel like some psychiatric disorder: I know someone who fell because he threw himself out of the window and that was due to him being nuts. Now I'm not a doctor: maybe someone with psychiatric disorder can just fall out of crazyness but that just sounds weird.

Be well mate.

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