Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

A battle over Canada’s mystery brain disease

bbc.com

Post reply on HN
Print view View original

121–130 of 162 posts

Re: A battle over Canada’s mystery brain disease

#121

Post by sevensor »

unsupp0rted wrote: post #107
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.

“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”.

To be fair, this is also what I hear from my GP when I have no complaints at all. It’s not bad advice, but I think it’s what most doctors tell patients they deem basically healthy. Nobody gets hurt by eating fewer peanut butter cups and taking the dog for a longer walk.

Re: A battle over Canada’s mystery brain disease

#122

Post by QuadmasterXLII »

XorNot wrote: post #52
_zagj wrote: post #8

I watched a documentary about Morgellons, and the patients would often seem quite reasonable at first, but the more they spoke, and the more they described their symptoms, the crazier they sounded. One patient, whose brother, ironically, was a physician (and one skeptical of Morgellons as anything other than delusional parasitosis), seemed earnest, if intense, in describing how Morgellons had destroyed his quality of…

> However, one could very well imagine an infectious disease, with or without a dermatological component, causing delusional parasitosis. Except what's more likely is that it's just psychological - which doesn't mean it doesn't have physiological treatments, it's just going to be for the psyche issue though. Put it another way: it's well recognized eating disorders exist. But they're psychological disorders: they res…

Worth noting that in a preindustrial society, plenty of mental illness is caused by infectious agents- at minimum rabies, hookworm, syphilis- so it’s not like science doesn’t believe mental illness can be caused by an infectious agent, or has any bias against that hypothesis. Its one of the first things checked for.

Re: A battle over Canada’s mystery brain disease

#123

Post by expedition32 »

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.

What doctor claims that everything about the human body is known? Or that they can cure everything?

Re: A battle over Canada’s mystery brain disease

#124

Post by Waterluvian »

jacquesm wrote: post #114
patcon wrote: post #77

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 compa…

This was one of the more surprising things to me when I lived in Canada: that there is so much of this. Depending on which region you are in you will either have state monopolies on the strangest things and/or a couple of families that have their fingers in just about every pie. And don't get me started on the telecommunications sector.

I wonder if this is largely a function of geography and population. Do we see similar strange things in countries like Australia, Sweden, etc.? Kind of like a small town effect at the national scale.

Re: A battle over Canada’s mystery brain disease

#125

Post by VladVladikoff »

sevensor wrote: post #121
unsupp0rted wrote: post #107

Earlier quoted context omitted.

“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”.

To be fair, this is also what I hear from my GP when I have no complaints at all. It’s not bad advice, but I think it’s what most doctors tell patients they deem basically healthy. Nobody gets hurt by eating fewer peanut butter cups and taking the dog for a longer walk.

On one visit to my doctor, where the issue was a sports related injury, my doctor told me to get more exercise. Obviously the advice is parroted so often she just blurted it out without thinking. She knows full well I train regularly and if anything get too much exercise.

Re: A battle over Canada’s mystery brain disease

#126

Post by Klonoar »

SyzygyRhythm wrote: post #106
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.

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, a…

Minute I read the chain above I was looking for someone to point out WPW. It’s relatively easy to manage or cure once you catch it.

Re: A battle over Canada’s mystery brain disease

#127

Post by ajb »

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.

Saying to a patient "you have X" can communicate three different things:

- a casual diagnosis: your problem is caused by C

- a syndrome: you have this collection of symptoms which often appear together, we don't know what causes it, we may have some treatments that can help.

The difference between these two is often not communicated well, but they are valid diagnostic categories.

There is a bigger problem with the third one:

- we have done some investigation and don't think further investigation is worth doing.

This may be a correct judgment, or it may not. But it is not a property of the patient. Essentialising it to the patient is incorrect and potentially dangerous. Especially as, it's rarely the case that they've "looked at everything under the sun". There are many reasons for stopping before that - some of them valid, but some not.

Re: A battle over Canada’s mystery brain disease

#128

Post by [deleted] »

jacquesm wrote: post #119
OutOfHere wrote: post #48

These sick people there need to move out permanently to go live far away from the province and see if they get better. If it's prion disease, they probably won't reliably get better by moving alone. They also should do private testing for heavy metals.

It it's a prion disease they won't get better period.

[deleted]

Re: A battle over Canada’s mystery brain disease

#129

Post by OutOfHere »

jacquesm wrote: post #119
OutOfHere wrote: post #48

These sick people there need to move out permanently to go live far away from the province and see if they get better. If it's prion disease, they probably won't reliably get better by moving alone. They also should do private testing for heavy metals.

It it's a prion disease they won't get better period.

There is an experimental existing drug combo of trimipramine+fluphenazine that might help prion disease but it won't cure it: https://medicalxpress.com/news/2011-09-screen-antidepressant.... The corresponding paper is https://pubmed.ncbi.nlm.nih.gov/21931860/

The Canadian government looks to have both failed and abandoned its people. It could have tested them, profiled the disease, understood its cause, and tried treatments, but it looks to just not care.

In the simple case, if it's just a neurotoxin, it might show signs of getting better upon moving out.

Re: A battle over Canada’s mystery brain disease

#130

Post by hluska »

VladVladikoff wrote: post #125
sevensor wrote: post #121

Earlier quoted context omitted.

To be fair, this is also what I hear from my GP when I have no complaints at all. It’s not bad advice, but I think it’s what most doctors tell patients they deem basically healthy. Nobody gets hurt by eating fewer peanut butter cups and taking the dog for a longer walk.

On one visit to my doctor, where the issue was a sports related injury, my doctor told me to get more exercise. Obviously the advice is parroted so often she just blurted it out without thinking. She knows full well I train regularly and if anything get too much exercise.

It’s strange - I had a heart attack almost eight years ago because of years of neglect and decided to do the opposite. I took it so far that I built an application to track everything I do and how it helps (or keeps me from) reaching my goals.

For the longest time all my data said exercise more. That was expected since I literally didn’t move all the way to a cardiac ward. Then all of a sudden it shifted to ‘exercise less, drink less coffee and sleep much more.’

I understand why doctors fall into that blind spot. It was perfect advice for me for a long time and took a lot of failure (and remarkably bad coping mechanisms) for me to figure out.

Post reply on HN