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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

#61

Post by matwood »

silisili wrote: post #45
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…

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…

Did you get an EKG? Do you have it documented somewhere this issue randomly occurring is your 'normal', that's easy to share if you have an actual cardiac event? The reason I ask is I have a sternum pectus, so my EKGs can be odd. My cardio said I'm fine, but I should keep my odd EKG on my phone to show any doctors if I have an actual cardio event. Otherwise they may end up chasing something that isn't the issue.

Re: A battle over Canada’s mystery brain disease

#62

Post by culi »

enceladus06 wrote: post #50
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…

Right, but what is causing the functional neurological disorder? Speaking as someone who has had alot of of chronic pain [CPPS] there is some sort of neuro issue going on but we don't know what it is. But "dementia, weight loss, unsteadiness, jerking movements and facial twitches" does seem like more than just neuro?

Well it depends if you believe the report or the doctor:

> In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick illness, said he had been “essentially cut off” from any involvement in the issue, adding he believed the reason was political.

> Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease.

> Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on.

> Coulthart’s email emerged more than a year after Marrero pleaded with the Canadian government to carry out environmental testing he believed would show the involvement of glyphosate.

https://www.theguardian.com/world/article/2024/jun/03/canada...

Re: A battle over Canada’s mystery brain disease

#63

Post by ajb »

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.

Re: A battle over Canada’s mystery brain disease

#64

Post by M95D »

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…

At 200 BPM the cause should be clearly visible on EKG. Examples:

https://en.my-ekg.com/arrhythmias/supraventricular-tachycard...

Re: A battle over Canada’s mystery brain disease

#65

Post by culi »

cperciva wrote: post #19

The only common factor between these patients is Dr. Marrero.

It was a number of doctors that were baffled by their patients that referred them to Marrero. Besdies, he's not the only one convinced there's an environmental factor at play:

> In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick illness, said he had been “essentially cut off” from any involvement in the issue, adding he believed the reason was political.

> Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease.

> Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on.

https://www.theguardian.com/world/article/2024/jun/03/canada...

Re: A battle over Canada’s mystery brain disease

#66

Post by on_the_train »

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 condition without having one: I just get nervous from measurements lol

Re: A battle over Canada’s mystery brain disease

#68

Post by jemmyw »

silisili wrote: post #45
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…

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 some variant. But it pretty much went away, it seemed that getting dehydrated and/or alcohol was triggering it for me.

I actually find a smartwatch that monitors my heart rate very reassuring. I have suffered from anxiety in the past and if I think I'm having anxiety symptoms I can glance at my watch and it tells me everything is fine before I start stressing and making it manifest physically.

Re: A battle over Canada’s mystery brain disease

#69

Post by konschubert »

whatsupdog wrote: post #43
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…

How many COVID shots did you get? I noticed my resting heart rate go up after the first one. So I never got another one.

An immune response to any trigger temporarily increases the heart rate.

Re: A battle over Canada’s mystery brain disease

#70

Post by silisili »

matwood wrote: post #61
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…

Did you get an EKG? Do you have it documented somewhere this issue randomly occurring is your 'normal', that's easy to share if you have an actual cardiac event? The reason I ask is I have a sternum pectus, so my EKGs can be odd. My cardio said I'm fine, but I should keep my odd EKG on my phone to show any doctors if I have an actual cardio event. Otherwise they may end up chasing something that isn't the issue.

Good idea. I don't, but hopefully I or my wife is around to tell them.

What's funny, or depressing depending on how you look at it... when I told my dad the terrible news, he said 'oh yeah, that's been happening to me for years.' Like I mentioned, nobody, including my parents, seem to teach you about getting old...which is terrible for anxious people like myself.

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