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October 04, 2019



This is a problem with many Mystery Onset Illnesses with high individuality: sometimes there *is* a reason and if you fix it, poof, away goes the Mystery Onset Illness. And other times you try various things and then it goes away, but correlation is not causal... but for any given individual migraine story, you don't know whether the person's migraine would have stopped/started there anyway, or whether it's causal, and if it's causal, where that particular trigger or curative might work on you, too.

(for a while, I had IBS that was triggered by peppers [like, bell peppers or jalapenos or whatever] and *lettuce* - if I stayed away from them, minimal symptoms; otherwise, symptom-city. But it does kind of make you try crazy things (and/or other people's bizarre internet things) when the problem recurs after "one weird trick" has worked on it before, because what if I can make it go away this time too by something as simple as going for spinach instead of lettuce?...)

(this is, incidentally, one of the reasons why I wish the human body provided accurate printouts of what's actually going on and how to fix it, where it can be fixed, because auuugh.)


KC - humans want to make sense out of chaos, and sometimes you can’t.


Yes, definitely.

One of the difficulties, though, is knowing when you really can't make sense out of the chaos vs. when you're just barely missing something. (as someone who has thoroughly kicked herself for missing a correlation that was obvious in hindsight; I don't know if you've ever had that sort of "aha" moment where, like, honestly, you could have saved yourself literally *years* of pain by twigging to this earlier)


KC - if I had just read past the word “degenerative “ I would have diagnosed myself with MS years earlier


That's interesting! What blocked you at "degenerative"? (I know a lot of people assume "degenerative" means "strictly linear progression downwards of all symptoms all the time with no temporary bits of feeling better" as opposed to its actual meaning, which from the little I understand seems to be "when the graph is totally smoothed out, the average gets worse over time if disease is left untreated" but other people simply believe I Can't Possibly Have Something That Sounds That Bad, which is a pretty weird psychological thing, and others glaze over once the syllable count gets too high, and I don't even know what all the possible reactions are...)

Would an earlier diagnosis have helped you, or would it not have made any particular difference? (sometimes even if you can't treat something, it's helpful to have a label for it rather than for it to be a big unknown scary thing; other times, the label is more scary than the unknown! And I know you eventually found good treatment, but if that was a drug trial, presumably it wasn't available years earlier?)


KC - I doubt that I could have been diagnosed much earlier. It was my second noticeable exacerbation, and at that time you had to have two minimum. And I was the person who felt degenerative was a rapid descent to death.

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