I agree that EEG specificity and sensitivity can be problematic but usually the pwEpilepsy have had previous EEG’s that show their seizure activity. It is possible to develop a new presentation of a seizure disorder with a new pathology. That is investigated for all known causes. We also do blood tests post seizure, there is an increase in certain blood chemistry. No FND diagnosis is made until the person is thoroughly investigated.
Thanks again for continuing to respond on this.
Blood tests are not a sure way to diagnose epilepsy:
Blood biomarkers in epilepsy, 2022
Robust and accessible biomarkers are greatly needed in epilepsy. Diagnostic and prognostic precision in the clinic needs to improve, and there is a need for objective quantification of seizure burden. In recent years, there have been advances in the development of accessible and cost-effective blood-based biomarkers in neurology, and these are increasingly studied in epilepsy. However, the field is in its infancy and specificity and sensitivity for most biomarkers in most clinical situations are not known. This review describes advancements regarding human blood biomarkers in epilepsy. Examples of biochemical markers that have been shown to have higher blood concentrations in study subjects with epilepsy include brain proteins like S100B or neuronal specific enolase, and neuroinflammatory proteins like interleukins, and tumor necrosis factor-alpha. Some of the blood biomarkers also seem to reflect seizure duration or frequency, and levels decrease in response to treatment with antiseizure medication. For most biomarkers, the literature contains seemingly conflicting results. This is to be expected in an emerging field and could reflect different study populations, sampling or analysis techniques, and epilepsy classification. More studies are needed with emphasis put on the classification of epilepsy and seizure types.
So, blood tests are a long way from being a foolproof method to diagnose epilepsy. As I wrote in a post above, other methods of diagnosing epilepsy are also far from perfect, including EEGs. I don't think the inadequacy of tools to diagnose epilepsy is in dispute. So, we are left with a diagnosis of a functional disorder by exclusion, and by the clinician's experience. I understand that there might be a very rare person who is faking epileptic seizures and clinicians might be able to pick that up, but I still can't see what evidence there is for the existence of psychosomatic seizures. Are you still completely confident that the people you saw diagnosed with functional seizures were having functional seizures? Perhaps functional seizures do occur, but I don't understand how you can be sure. And, if you can't be sure, should that uncertainty not be conveyed to the patient?
Unfortunately there is a difference between reading papers as a layman, or training in reading the evidence base of a paper, versus clinical training and experience.
I do understand that, for sure it is true. But, at the same time, people with ME/CFS have suffered at the hands of clinicians who feel that their experience trumps evidence, or that there is no need for evidence. To quote a
recent tongue in cheek post on the Humour thread:
The more senior the colleague, the less importance he or she placed on the need for anything as mundane as evidence. Experience, it seems, is worth any amount of evidence.These colleagues have a touching faith in clinical experience, which has been defined as ‘‘making the same mistakes with increasing confidence over an impressive number of years.
It's great that you have seen hours of time spent ruling out other possibilities before a psychosomatic diagnosis is made. As others have said, that is certainly not the case all of the time. People can be diagnosed with psychosomatic disorders with no investigations at all. In the case of those people you came across who were diagnosed with functional seizures, did they all get given the more invasive forms of EEG that can pick up seizures in the deeper layers of the brain before they were diagnosed with functional seizures, or was there just a reliance on scalp EEGs?
In Australia, my son saw a psychologist with the aim of getting him some support to cope with the sudden losses when he got ME/CFS. He didn't really need or particularly want the referral, but 10 free sessions with a psychologist was one of the few things our GP could do, and so we thought, 'what harm can it do?'. The psychologist diagnosed my son with conversion disorder (another name for functional disorder), despite there being no history of significant trauma of any sort and my son being very content with his life at the time he became ill. Perhaps that sounds unlikely; I probably would be skeptical if I had not experienced it. But, that's all it took - a psychologist who believes that the symptoms of ME/CFS are symptoms of a functional disorder, and, bam, you have 'conversion disorder' in your medical record. I know of a young person in New Zealand who was, fairly recently, told at a pain clinic that her ME/CFS symptoms were because of a functional disorder.
As you acknowledge is the case in ME/CFS, sometimes biomarkers of non-psychosomatic pathology just can't be found with the level of effort that a reasonably diligent doctor can arrange. What should be done when there are no signs to indicate an alternative diagnosis? Does it come down to the experience (and prejudices) of the clinician? What chance does a person with a history of mental illness diagnoses, school truancy and maybe some confrontations with people in authority have of avoiding having their reports of physical symptoms in the absence of biomarkers being labelled as a functional disorder when my son, who liked school, was liked by friends and teachers and was psychologically well, could not?
The clinician has to prove it
The thing is, very often clinicians don't have to prove things.
I just want to note that I know psychiatrists often get given a hard time on this forum. Many of the strongest BPS proponents are, in fact, not psychiatrists. And there are a number of reports from members that a psychiatrist believed them when they said their symptoms weren't psychosomatic and wrote a report to say just that. And that that report made a huge difference to the way they were treated in the medical system. A good psychiatrist can really help.
, I think the tongue in cheek paper corresponds very much to my experience (and seems to apply to Garner quite well currently)….I could also name a few people in my country but going about lambasting them could be troublesome and create more trouble for advocates….
