From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

[Sean]

is this a quote from the software/hardware paper or some other paper?

Another paper. From Hutan's post above (#75):

A Case of Sporadic Creutzfeldt-Jakob Disease Presenting as Conversion Disorder

 

[SNT Gatchaman]

In actuality, an FND diagnosis on your medical chart is pretty much a death sentence because you'll never be treated seriously by any healthcare provider ever again and should you ever develop another condition that's actually fatal you will very likely end up being dismissed as anxious/hysterical, delaying your diagnosis and experiencing extreme abuse.

I can't quote from our local LC support group because our comments there are confidential, but I will summarise by saying they are essentially verbatim what Sid writes. This also includes being openly laughed at by specialists.

 

[dave30th]

Another paper. From Hutan's post above (#75):

That paper also includes this interesting paragraph. They acknowledge the issue that an FND label sticks...and in this case, it's the psychiatrists to the rescue!!

"This case also illustrates the difficulty encountered when patients are assigned a functional or conversion disorder diagnosis. As such, it was not that the provisional diagnosis of a functional disorder was incorrect but that it produced an assumption that there were or could not be other factors at play. All of the patient’s symptoms began to be viewed as functional, and the diagnosis became immutable. When the patient’s presentation changed, the psychiatry team, which had remained involved, suspecting that something was afoot, recommended additional diagnostic testing and specialist reconsultation. Thus, the diagnosis of conversion disorder can lead practitioners to foreclose on other possibilities, and it may be up to the psychiatrist to reopen them."

 

[Sean]

When the patient’s presentation changed,

By which they most likely mean when the clinicians' rigid thinking and prejudice about the existing symptoms changed.

 

[dave30th]

By which they most likely mean when the clinicians' rigid thinking and prejudice about the existing symptoms changed.

I think they might mean "by the time the patient's symptoms had developed and progressed so dramatically that only an idiot could have failed to notice..."

 

[Eddie]

Slightly off topic but I often think about how many other processes in the body could easily be thought of as functional if we had limited understanding of how they work. If we think about fitness I'd imagine FND proponents easily could have argued that being unfit is a result of poor system function (whatever that means). However, we now know that working out causes all sorts of structural changes in muscles, blood flow, the heart etc. that together lead to improved fitness. To me it is a shame that the difficulty in studying the brain has allowed this pseudoscience to survive for so long. I think that the best way to combat FND will be to better study the brain and figure out what structures are impacted and in which ways.

 

[SNT Gatchaman]

It would be similar to the "normal appearing white matter" (NAWM) in MS, which absolutely isn't at autopsy, now able to be shown in vivo with advanced MRI techniques. This gets diagnosed as "MS with FND overlay".

Can you explain this? Not quite sure what you mean.

Sorry, missed that earlier.

In Extensive Brain Pathologic Alterations Detected with 7.0-T MR Spectroscopic Imaging Associated with Disability in Multiple Sclerosis (2022, Radiology) —

MR spectroscopic imaging at 7.0 T allowed in vivo visualization of multiple sclerosis pathologic findings not visible at T1 or T2-weighted MRI. Metabolic abnormalities in the normal-appearing white matter and cortical gray matter were associated with disability.

Noting in Using myelin water imaging to link underlying pathology to clinical function in multiple sclerosis: A scoping review (2022, Multiple Sclerosis and Related Disorders) —

MWI is a neuroimaging technique with increased specificity to myelin and offers greater insight to MS-driven pathology and its clinical manifestations, including motor and cognitive dysfunction and rehabilitation response.

MS encompasses a wide clinical spectrum and identifying functional domains that moderate or mediate one another across individuals is key to enhancing targeted rehabilitation strategies. Examining functional domains in a siloed nature only provides limited insight to the underlying mechanisms at play.

Also Neuroinflammation in the normal-appearing white matter NAWM of the multiple sclerosis brain causes abnormalities at the nodes of Ranvier (2020, PLOS Biology) —

In conclusion, our data strongly suggest that diffuse pathology in the NAWM, which includes paranodal disruption, could be caused by the presence of local cytokine-induced inflammation leading to excess glutamate release from microglia. Such paranodal pathology, which cannot be attributed to focal demyelinating lesions, would be expected to alter the efficiency and velocity of AP conduction, adding to the overall neurological dysfunction in MS. This could also be relevant to white matter changes seen in other neurodegenerative conditions in which chronic microglial activation is a feature.

Earlier Normal-appearing white matter in multiple sclerosis is in a subtle balance between inflammation and neuroprotection (2008, Brain) —

Altogether, our data suggests an endogenous inflammatory reaction throughout the whole white matter of multiple sclerosis brain, in which oligodendrocytes actively participate. This reaction might further influence and to some extent facilitate lesion formation.

 

[Jonathan Edwards]

I agree about the variety of conditions dumped into the FND bucket. But we have seen enough published case studies of people who have been given an FND diagnosis and then have gone on to have worsening symptoms and eventually be diagnosed with a progressive neurological diseases to question the capacity of the medical system to always accurately identify progressive conditions.

Sure, but the FND category can only increase the chance of missing stuff.

I think it is reasonable to say that people with problems of this sort, on careful assessment, can be told that even though we have no real idea what is causing the problem in the majority of similar cases no progressive cause gets found, but follow up from time to time might be sensible to ensure nothing changes.

As an analogy, my cousin diagnosed me with 'functional bowel disease', by which I understood that my symptom pattern was most likely not associated with cancer. I had specifically nocturnal pain, which is said in the books to be an indicator of cancer. On considering all the other context factors his view was that the nocturnal pattern was not particularly unusual and unlikely to be progressive. I had a CT and an endoscopy and nothing structural showed.

When 'functional' reassures the doctor (that they have identified a pigeon hole) is when we should worry.

 

[bobbler]

I agree about the variety of conditions dumped into the FND bucket. But we have seen enough published case studies of people who have been given an FND diagnosis and then have gone on to have worsening symptoms and eventually be diagnosed with a progressive neurological diseases to question the capacity of the medical system to always accurately identify progressive conditions. For example, there was the woman with Creutzfeldt-Jakob Disease who was initially diagnosed with FND (with the case study authors continuing to insist that she had an overlay of FND, even after the identification of the CJD, even as her brain disintegrated. I still find that case study one of the most astonishing medical accounts I have come across.)


A family member had a malformation of the blood vessels on the surface of the brain - as I understand it, an artery not connecting up properly to the capillaries, but instead bypassing those to shunt the high pressure blood into a vein. Such a malformation has all sorts of causes - congenital, physical trauma and disease. The vascular malformation caused some death of brain cells that had been served by the bypassed capillaries and, so, a loss of function, some of which was regained as neural plasticity allowed other parts of the brain to take over that function.

The structural problem also caused swelling where the vein became leaky under the high pressure of the shunted blood supply. The swelling, pressing on the brain and its blood supply, would periodically get worse, typically after some activity increasing blood pressure, and then reduce. That produced a pattern of fluctuating symptoms, including a loss of function in a hand, cognitive issues and delirium.

In my family member's case, the malformation was not diagnosed straight away, and in fact may not have ever been. He was very fortunate that someone took another look and arranged the right sort of scan. To my knowledge, he was never given an FND diagnosis. He is of the age where strokes are expected, and that is the diagnosis he was given. If he was a young girl with the same problem, maybe the outcome would have been different.

This experience underlined to me the ridiculousness of suggesting that a fluctuating pattern of symptoms is evidence of conversion disorder. Stress, whether it be physical or emotional stress, does have impacts on the body, and those impacts, such as an increase in blood pressure, absolutely can exacerbate neurological disease.

(sorry for a few edits for clarity)

THe other day for CJD cruetzfeld jacob (I notice that CJD doesn't come up when you search the acronym here?) I came across the UK compensation scheme. The first thing I was curious to know was whether people had to ascertain their diagnosis before they died to be eligible, which according to AI they are, but I haven't read the detail and don't know how easy this would be to happen if for example someone was given an alternative diagnosis.

It then struck me I was curious about which parts of the world these FND is essential to be diagnosed first type papers were coming from, and whether there were any schemes there and what the situation would be for those with vCJD in the countries where these suggestions were being made in papers.

Anyway these are the little snippets of what I've picked out so far for the UK one.

ANd yes, of course it can't be assumed this 'context' isn't relevant to those writing the papers?

Microsoft Word - 31675_1.doc
Which includes the following:

Compensation is only available to Victims who have suffered vCJD, and their families and carers. Before a claim can be considered, the Trustees will need to be satisfied that the two eligibility requirements as set out in the Trust Deed have been met; first, that the Victim suffered vCJD on the legal test of the balance of probabilities, which means that the Victim was at least 51% likely to have suffered vCJD, and secondly, that he or she was resident in the UK for at least 5 years between 1982 and 1996.

It seems people don't have to be diagnosed before they die. And there are specific sums for the victim, then other potential payments for close family, dependents.

A sum of at least £120,000 shall be paid to the Victim, some or all of which can be paid during the Victim’s life. The Basic Sum will be increased annually to reflect the impact of inflation upon the award. ..... If a balance of the Basic Sum remains to be paid after the Victim has died, the Trustees have a discretion as to how that balance should be distributed.

I thought there were interesting things that needed to be proven in for example the following loss of earnings document: Microsoft Word - 27870_1.doc

The main page for the fund is: The Compensation Scheme – vCJD Trust – Advice and Legal assistance for victims of vCJD
and to view these documents you have to go to 'the scheme' tab and then however over 'how to claim' and then however over each of pre-2010 and after-2010 and there are lots of other drop-downs for each.