4 ms·

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

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/conversion-disorder/symptoms-causes/syc-20355197 https://www.mayoclinic.org/diseases-conditions/conversion-di... , which is a horrible condition that accounts for a plurality of cases seen by most neurologists. This phantom diagnosis will probably make recovery almost impossible for those people. Acceptance of that diagnosis is the number 1 positive indicator for recovery. Source: I live in the canadian maritimes, and know many neurologists.

deleted 9mo ago
[deleted]
enceladus06 9mo ago
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?
- culi 9mo ago
  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-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada...
  - pepa65 9mo ago
    If it is glyphosate related, it should be way more widespread...
- CheeseFromLidl 9mo ago
  dementia, weight loss, unsteadiness, jerking movements and facial twitches This actually describes my benzodiazepine withdrawal symptoms. The only thing missing is the suicide-inducing tinnitus.
  - jacquesm 9mo ago
    Tinnitus is terrible. There are days I'd rather be deaf, but I know a few people that are deaf and realize that that is just my idiot side looking for a quick solution to the problem ignoring the downsides (and I love music). It is so frustrating.
culi 9mo ago
> The committee and the New Brunswick government also cast doubt on the work of neurologist Alier Marrero, who was initially referred dozens of cases by baffled doctors in the region, and subsequently identified more cases. The doctor has since become a fierce advocate for patients he feels have been neglected by the province. https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada... It seems to me that it's doctors reaching out to Marrero. It also seems odd that [these|this] illness(es) disproportionately affected young people. Another article I just read stated Marrero reached out to get second opinions but was blocked. > He claims he made arrangements in 2020-21 for "subject-matter experts" to travel to New Brunswick to evaluate patients, but the province "chose not to avail itself of this invaluable expertise." https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797 https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n...
- Aurornis 9mo ago
  > It seems to me that it's doctors reaching out to Marrero. This happens a lot in medicine: One doctor becomes locally renowned for taking in patients with hard-to-diagnose issues and giving them answers, right or wrong. Other doctors take note and then start offloading their difficult patients to other doctors happy to take them in. It happens all the time with different doctors. Once they find a niche, they start diagnosing everyone with the same thing. A common theme is that their patients don't get better, but are happy to have someone give them a diagnosis. In the scarier cases, it's surgeons doing this. There have been some sad periods in medicine where certain doctors starting performing unnecessary surgeries on everyone who visited them with vague symptoms. These doctors are scarily popular in a certain type of Facebook health group where patients congregate looking for answers and, lo and behold, some doctor or surgeon becomes their hero with a supposed answer to all of their questions. It usually goes on for several years before everyone realizes that nobody is getting better from these doctors and nobody ever gets rejected for a diagnosis when they visit that doctor.
ajb 9mo ago
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.
- taurath 9mo ago
  “Not otherwise specified”
- elric 9mo ago
  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.
  - bell-cot 9mo ago
    > 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.
  - ajb 9mo ago
    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.
jrflowers 9mo ago
> 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”?
yawnxyz 9mo ago
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
vasco 9mo ago
> The only common factor between these patients is Dr. Marrero They all live in the same province too. If you're already wrong here it's hard to trust anything else
- jacquesm 9mo ago
  That's signal though: it points to an environmental factor.
RobotToaster 9mo ago
FND is itself basically a trashcan diagnosis. https://en.wikipedia.org/wiki/Wastebasket_diagnosis https://en.wikipedia.org/wiki/Wastebasket_diagnosis
- culi 9mo ago
  Similar to Fibromyalgia and IBS
killerstorm 9mo ago
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?
jacquesm 9mo ago
> Source: I live in the canadian maritimes, and know many neurologists. That's a fairly weak claim for an appeal to authority.

deleted 9mo ago

[deleted]

enceladus06 9mo ago

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?

culi 9mo ago
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-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada...
- pepa65 9mo ago
  If it is glyphosate related, it should be way more widespread...
CheeseFromLidl 9mo ago
dementia, weight loss, unsteadiness, jerking movements and facial twitches This actually describes my benzodiazepine withdrawal symptoms. The only thing missing is the suicide-inducing tinnitus.
- jacquesm 9mo ago
  Tinnitus is terrible. There are days I'd rather be deaf, but I know a few people that are deaf and realize that that is just my idiot side looking for a quick solution to the problem ignoring the downsides (and I love music). It is so frustrating.

culi 9mo ago

> The committee and the New Brunswick government also cast doubt on the work of neurologist Alier Marrero, who was initially referred dozens of cases by baffled doctors in the region, and subsequently identified more cases. The doctor has since become a fierce advocate for patients he feels have been neglected by the province. https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness https://www.theguardian.com/world/article/2024/jun/03/canada... It seems to me that it's doctors reaching out to Marrero. It also seems odd that [these|this] illness(es) disproportionately affected young people. Another article I just read stated Marrero reached out to get second opinions but was blocked. > He claims he made arrangements in 2020-21 for "subject-matter experts" to travel to New Brunswick to evaluate patients, but the province "chose not to avail itself of this invaluable expertise." https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-neurologist-patients-public-health-canada-review-files-alier-marrero-1.6933797 https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-n...

Aurornis 9mo ago
> It seems to me that it's doctors reaching out to Marrero. This happens a lot in medicine: One doctor becomes locally renowned for taking in patients with hard-to-diagnose issues and giving them answers, right or wrong. Other doctors take note and then start offloading their difficult patients to other doctors happy to take them in. It happens all the time with different doctors. Once they find a niche, they start diagnosing everyone with the same thing. A common theme is that their patients don't get better, but are happy to have someone give them a diagnosis. In the scarier cases, it's surgeons doing this. There have been some sad periods in medicine where certain doctors starting performing unnecessary surgeries on everyone who visited them with vague symptoms. These doctors are scarily popular in a certain type of Facebook health group where patients congregate looking for answers and, lo and behold, some doctor or surgeon becomes their hero with a supposed answer to all of their questions. It usually goes on for several years before everyone realizes that nobody is getting better from these doctors and nobody ever gets rejected for a diagnosis when they visit that doctor.

ajb 9mo ago

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.

taurath 9mo ago
“Not otherwise specified”
elric 9mo ago
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.
- bell-cot 9mo ago
  > 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.
- ajb 9mo ago
  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.

jrflowers 9mo ago

> 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”?

yawnxyz 9mo ago

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

vasco 9mo ago

> The only common factor between these patients is Dr. Marrero They all live in the same province too. If you're already wrong here it's hard to trust anything else

jacquesm 9mo ago
That's signal though: it points to an environmental factor.

RobotToaster 9mo ago

FND is itself basically a trashcan diagnosis. https://en.wikipedia.org/wiki/Wastebasket_diagnosis https://en.wikipedia.org/wiki/Wastebasket_diagnosis

culi 9mo ago
Similar to Fibromyalgia and IBS

killerstorm 9mo ago

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?

jacquesm 9mo ago

> Source: I live in the canadian maritimes, and know many neurologists. That's a fairly weak claim for an appeal to authority.