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A battle over Canada’s mystery brain disease

bbc.com

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Re: A battle over Canada’s mystery brain disease

#71

Post by taurath »

ajb wrote: post #63
throwaway_9879 wrote: post #29

The answer is "nothing" The only common factor between these patients is Dr. Marrero. It is notable that he is not the only physician who works in that clinic, but is the only one diagnosing this condition. The most likely cause is weak diagnostic skills for challenging patients. Unfortunately, a majority of these patients likely have Functional Neurologic Disorder https://www.mayoclinic.org/diseases-conditions/conve…

This guy is probably chasing moonshine, but TBH "functional neurological disorder" sounds like one of those face-saving labels that doctors use when they don't have any idea what's going on.

“Not otherwise specified”

Re: A battle over Canada’s mystery brain disease

#72

Post by 0xbadcafebee »

This is a textbook case of mass hysteria. A whole lot of people in one place, all coming down with a mystery illness, with no apparent cause, and everyone has different symptoms. Instances like these have been reported multiple times in the past 20 years, as well as for thousands of years in the past. They all genuinely feel the symptoms. But the cause is clearly no physical thing in the environment.

Re: A battle over Canada’s mystery brain disease

#73

Post by silisili »

jemmyw wrote: post #68
silisili wrote: post #45

Earlier quoted context omitted.

Ha, same! The first time I noticed it, coupled with palpitations, I thought I was dying and went to the ER. I swear nobody teaches you how to get older, so everything feels like something is going way wrong. They treated me like a baby, said avoid caffeine, and maybe see a cardio. And I did. He was an old guy, didn't seem at all worried. He said he worked in pro sports and a surprising number of people have it, inclu…

I mean, I had a similar experience with the old doctor not being very worried when I had the same symptom. But when I raised that I was worried about having a heart attack and dying he was equally unworried about that "people die, don't worry about it". And yeah a surprising number of athletes also die suddenly from heart conditions, so I'm not sure I find that very reassuring. In any case, they did diagnose SVT or s…

Dehydration is the biggest trigger for me as well, as far as I figured out.

Not to be crude, but if my pee isn't basically clear, I immediately start slamming fluids until it is again.

Re: A battle over Canada’s mystery brain disease

#74

Post by femto »

Retz4o4 wrote: post #55
hedayet wrote: post #33

I was diagnosed with a mysterious tachycardia last year, coincidental to this headline: while I was living in Canada. At one point I checked into the ER with a resting heart rate around 200 BPM, and on some days my smartwatch couldn’t even detect a pulse because it was racing so fast. I eventually recovered-though I still avoid wearing smart devices because seeing my heart rate triggers anxiety-but the whole period e…

Covid.

Or POTS, which can be caused by covid.

https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard...

Re: A battle over Canada’s mystery brain disease

#75

Post by jrflowers »

throwaway_9879 wrote: post #29

The answer is "nothing" The only common factor between these patients is Dr. Marrero. It is notable that he is not the only physician who works in that clinic, but is the only one diagnosing this condition. The most likely cause is weak diagnostic skills for challenging patients. Unfortunately, a majority of these patients likely have Functional Neurologic Disorder https://www.mayoclinic.org/diseases-conditions/conve…

> The answer is "nothing"

Wait by “nothing” do you mean that there is no cause for the disease that the link you posted says has an unknown cause, or “nothing” do you mean that they don’t actually have anything wrong with them but you’re sharing a neat link about a disease that has an unknown cause?

I normally wouldn’t question an hour old throwaway that knows many neurologists, but what exactly are you applying the word “nothing” to here? You started with one statement, said that you don’t like a guy, and then wrote another statement that negates your first statement.

Like by “nothing” do you mean “I personally do not know, so my knowledge of what is causing this is nothing, but I want to share that I don’t like that one doctor”?

Re: A battle over Canada’s mystery brain disease

#76

Post by lostlogin »

silisili wrote: post #73
jemmyw wrote: post #68

Earlier quoted context omitted.

I mean, I had a similar experience with the old doctor not being very worried when I had the same symptom. But when I raised that I was worried about having a heart attack and dying he was equally unworried about that "people die, don't worry about it". And yeah a surprising number of athletes also die suddenly from heart conditions, so I'm not sure I find that very reassuring. In any case, they did diagnose SVT or s…

Dehydration is the biggest trigger for me as well, as far as I figured out. Not to be crude, but if my pee isn't basically clear, I immediately start slamming fluids until it is again.

I’ll add fatigue/stress.

A long bike ride after a stressful week and off it goes.

An interesting observation from a cardiologist to me was that cyclist have 5x the rate of rhythm disorders compared to to general population.

But… ‘It’s hard to work out if that’s drug induced or not’.

Say maybe lay off the performance enhancing drugs.

Re: A battle over Canada’s mystery brain disease

#77

Post by patcon »

I grew up in New Brunswick. It is a strange place politically.

I find it wild that the BBC never mentioned the most glaring underbelly of this:

New Brunswicks most significant employer for the past 100 years is Irving Oil & Irving Paper and Irving Forestry. They are different arms of a privately held family-run business, run by the descendants of the original founder (whose records are not as public as a traded company), in charge of the main industries of the province. They owned every newspaper in the province, and are known to be adversarial to any community paper, starting new papers just to drive out of business the small upstarts they don't own -- I've seen it play out in my community. People are literally afraid to criticize this family publicly, because they fund SO MUCH of the nonprofit sector. If you are trying to get a project off the ground, you can't look sideways at them or your project will be buried. And their papers certainly won't speak kindly of your criticism.

And most glaringly, one of their ex-Vice Presidents was premier of the province during this time.

So there is an extra level of concern that some locals have about the optics of the province shutting down the research.

The Irving family is highly manipulative of political affairs, and imho have held the province back for decades (e.g. influencing what schools get funded/built, to create the working stock that support their businesses, etc)

Re: A battle over Canada’s mystery brain disease

#78

Post by matwood »

on_the_train wrote: post #66
hedayet wrote: post #33

I was diagnosed with a mysterious tachycardia last year, coincidental to this headline: while I was living in Canada. At one point I checked into the ER with a resting heart rate around 200 BPM, and on some days my smartwatch couldn’t even detect a pulse because it was racing so fast. I eventually recovered-though I still avoid wearing smart devices because seeing my heart rate triggers anxiety-but the whole period e…

Fun story to add: I can't get my heart rate measured. I get so nervous about it that I immediately double my heart rate. Of course it's impossible to communicate that with doctors. One even equipped me with a 24h heart monitor. Only to have my stupid brain go on overdrive and clock my heart at 120+ for the entire time, with 0 sleep. I literally fainted when getting ekg cables on me. I now have on record a heart condi…

It's jokingly called 'white coat syndrome'. Any doctor who has a clue should understand this.

Re: A battle over Canada’s mystery brain disease

#79

Post by yawnxyz »

throwaway_9879 wrote: post #29

The answer is "nothing" The only common factor between these patients is Dr. Marrero. It is notable that he is not the only physician who works in that clinic, but is the only one diagnosing this condition. The most likely cause is weak diagnostic skills for challenging patients. Unfortunately, a majority of these patients likely have Functional Neurologic Disorder https://www.mayoclinic.org/diseases-conditions/conve…

and other times it turns out it IS something, e.g. alpha gal and all kinds of weird autoimmune disorders

this stuff is hard, because our tools suck and everything and everyone is an an unreliable narrator

Re: A battle over Canada’s mystery brain disease

#80

Post by thelastgallon »

pash wrote: post #46

I’m not qualified to comment intelligently on what might be going on here, but I’d like to add some background color that the article lacks. Creutzfeldt–Jakob Disease is a prion disease [0] for which there is no definitive diagnosis in vivo. A confident diagnosis can be made only after examining brain tissue under a microscope. Prions are an unusual type of mis-folded protein that induce other proteins to take on a s…

Thank you for the context.

> some are transmitted, typically by eating some part of an animal that contains prions, which then end up in your own body, inducing proteins in your body to take on prion configurations.

I wonder about this part. I thought consumed protein gets broken down into amino acids and new proteins are created later. Do prion proteins bypass this step?

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