December 13, 2012

Dissociation Cat

Dissociation Cat

Its no fun for Dissociation Cat
He doesn’t know where he’s going
and he doesn’t know where he’s at
He meows and growls without even knowing
How terrible it is to be like that

So what kind of a blog entry should go with Dissociation Cat? Not an easy one but here it goes:

Spasms, paroxysms, neurotoxicity, seizures, pseudo-seizures. No one seems to clearly know what to call what happens to my muscles, or, for that matter, what exactly to do about it. In my diligent search for answers I came across that very last term, pseudo-seizure, and did some more reading on it because it piqued my interest. I believe it points to a fissure in medical understanding when it comes to unexplained symptoms. Surprisingly little seems to be known about seizures that occur without evidence of abnormal electrical activity on an EEG. Recently, however, I spoke with people who had seizures with normal EEGs and it gave me more than a mild dose of skepticism about how accurate a diagnostic tool they might be. One patient told me that her EEG was abnormal only on the fourth try! And some people have seizures that never turn up on an EEG. Clearly something is amiss.

What is clear, however, is that there is apparently a pecking order in neurology as to how seizures are classified. The literature I read tells us that “true” or “real” seizures are due to abnormal electrical activity in the brain and that everything else is a “pseudo-seizure.” I have two serious questions about that. Firstly, if EEG’s don’t always pick up on the first try, how is one ever to determine their validity? The second question I have is why a seizure in the absence of a positive EEG would be dubbed “not real.” Seems to me there might be more than one way for them to occur. Metabolic imbalances, for instance, or perhaps a circulatory problem.

Then there is the problem with terminology. I am of the school of thought that unless there is a false positive or negative on a test - such as a glitch in bloodwork - that tacking a word like “pseudo” onto an illness is generally a bad idea. It harkens back to the retrograde nineteenth century notions of “hysteria” in which the history default mechanism for unexplained symptoms was to blame the patient for having them. All this does is delay progress, discovery and relief. “Hysterical Paralysis” was the term of choice, for instance, until the cause of MS was finally established. So “pseudo” may just mean “don’t know yet.”

But the problem with the “pseudo” label is that no matter how you slice it, it has a decidedly pejorative ring to it. Pseudo means fake, not real, false, and branding a person’s suffering with such an epithet seems callous at best and immoral at worst. Indeed, some of the reports on pseudo-seizures that I read on the internet were truly disparaging. One can even watch a You-Tube video of an unfortunate victim having a “pseudo-seizure.” Out of curiosity I did watch it but only when I studiously wiped out the concept of the label. By only observing and not thinking “fake,” I was able to first of all see a human being and secondly one who was suffering badly at that. I also started noticing details, like a palsy in the left hand with a spasm in the thumb. It caused me to wonder if the person wasn’t really having some sort of mini-stroke. But I will leave that up to the experts in the hopes that the future may bring some inquiring and more open minds. I only hope that the poor patient received more than pseudo-treatment.

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