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

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.

 

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."

 

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..."

 

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.

 

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) —

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) —

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

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

 

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.