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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

#101

Post by rob_c »

sebasv_ wrote: post #96
ajb wrote: post #63

Earlier quoted context omitted.

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.

It is not meant to save the doctors face. The very definition of FND is "doctors dont know what is wrong, but they acknowledge that your symptoms are real". The point of giving it a name is in the second part. Its about explicitly acknowledging the limitations of medicine

Which when it leads to abuse it's saving face and when it's incompetence it's saving face.

For a competent doctor it's used too let a patient know they're doing their job and an acknowledgement of symptoms.

Unfortunately to a _lot_ of the field "catch-all" "diagnoses" (in intentionally separating these labels). It's the same as diagnosing someone with chronic fatigue. It's diagnosing via exclusion.

The difference between chronic fatigue and brain disorders being that you're more likely to get someone looking to make a "name for themselves" diagnosing or curing the latter vs the former...

Re: A battle over Canada’s mystery brain disease

#102

Post by maxbond »

vasco wrote: post #89
matwood wrote: post #61

Earlier quoted context omitted.

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.

Finally a useful application of a tattoo

https://xkcd.com/933/

Re: A battle over Canada’s mystery brain disease

#103

Post by macbr »

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…

Creutzfeldt-Jacob can be tested for using the RT-QuIC test[1] where a positive result guarantees with near certainty that misfolded prions are present. But as the disease is defined via the physical changes in brain tissue only obtainable via autopsy a definite diagnosis is often only made after death.

[1]: https://en.wikipedia.org/wiki/Real-time_quaking-induced_conv...

Re: A battle over Canada’s mystery brain disease

#104

Post by killerstorm »

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…

Consider hypothetical scenario: some present in the environment toxin is causing migraine symptoms.

A doctor following diagnostic criteria might assign "migraine" diagnosis and provide standard recommendations for migraine management.

Another doctor seeing a quick uptick of patients with migraine symptoms will try to investigate toxins and infections.

Which doctor is doing something useful here?

Re: A battle over Canada’s mystery brain disease

#105

Post by djmips »

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…

It's has similarities to debugging intermittent problems in software which many of us are familiar with. Heisenbugs. Heisen-medical issues.

Re: A battle over Canada’s mystery brain disease

#106

Post by SyzygyRhythm »

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.

Getting an EKG seems very prudent. I had one done for a non-heart related procedure, and afterwards was basically asked: - Ever have any heart events? Heart racing, palpitations, that kind of thing? - Yes, a few times a year I've noticed events like that. Resolves in a few minutes, though. - Well, your EKG shows a slurred delta wave. Sign of Wolff-Parkinson-White syndrome. Might want to get that checked out.

I did, and it was. Fixed with ablation. No issues since. Other types of supraventricular tachycardia can also be cured with ablation.

Re: A battle over Canada’s mystery brain disease

#107

Post by unsupp0rted »

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.

“FND”… I bet they need to exercise, eat a balanced breakfast, sleep more and lower stress.

That’ll definitely pause the rapidly progressing dementia and loss of muscle control in patients in their 20s.

When doctors have no idea what something is and aren’t willing to keep trying diagnostics and interventions, it’s always “hey maybe get some more cardio and go easy on the peanut butter cups”.

Re: A battle over Canada’s mystery brain disease

#109

Post by bell-cot »

elric wrote: post #81
ajb wrote: post #63

Earlier quoted context omitted.

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.

It's a diagnosis that's made only after excluding a wide range of other potential causes for the symptoms (like brain damage, structural abnormalities, strokes, seizures, MS, infections, ...). It's not just a case of "we don't know", it's a case of "we've looked at everything under the sun and nothing fits". Sounds like one of those things that needs more research.

> needs more research.

Yes, but it also sounds like the initial stages of "research" should be taxonomy. Starting with QC'ing current testing & diagnosis standards, to have more confidence that the data is reasonably clean.

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