Part of the Solution, or Part of the Participate?

Well, it would seem that I simultaneously have scored myself some cloud breaks and some canned worms. I got to pay a visit with my homie the endocrinologist. He said something today that I have never heard a doctor say before:

“I have an answer.”

Holy cow. I mean, I knew I felt loads better (or at least less like having to pee and chug water) after the desmopressin (DDAVP) injection during the water deprivation test. It’s just that I have this tendency, you know, to feel one way and have tests say something completely different. But not this time.

I do in fact have central diabetes insipidus. Again, this has nothing to do with blood sugar, insulin or pancreases (pancreasi?). So please, keep them JellyBellies coming… It has nothing to do with medication I’ve taken in the past (if it did, it’d have shown up prior to this summer), or stuff I’m taking now (he’s certain).  I’m pretty sure I’ve not had any brain surgery or radiation therapy performed in the last several months, and I’m equally as certain I didn’t fall on my head and break it (well, again, recently).

So that means it’s something else. First, though, to alleviate the huge pain in the ass factor, and treat it. Fortunately, central DI is a little more obliging when it comes to management than the nephrological type.  I start with 0.1 mg of DDAVP tonight, and if I find it’s not quite cutting it, I can take another 0.1 mg eight to twelve hours later. I have to be careful not to drink when I don’t feel thirsty (since my thirsty sensor is faulty, I’m going to have to watch that I don’t let things go overly long). Even if I don’t feel anything but less compelled to have to visit the latrine, that’s okay in my book.

Second, I need another MRI, with special attention paid to my pituitary/sella/hypothalamic region. We’re looking for tumors, dark spots, white spots, Jimmy Hoffa, Amelia Earhart… You name it. So there could be something there, since it seems that they don’t always pay a whole hell of a lot of attention to that area anyway (lovely!) and the DI started a few months after my last MRI, and it might not have showed anything then.

There’s the ever present (and extremely likely) possibility they won’t see anything. Well… anything that’s amiss. That can happen. But again, the deal is: the test confirms that it’s neurological DI, that I am either greatly or completely unable to make or distribute the anti-diuretic hormone, and even if it’s idiopathic, it’s that they don’t have an explanation of why it’s busted, not that there isn’t damage. And idiopathic DI doesn’t always remain idiopathic.

If they do see something, I’d be surprised as hell if they can actually recognize what it is. I mean… there are lots of things that can resemble each other that go wrong in your brain and spine. Really different things that look very much alike. Like evil twins that are… both evil. So the chances are really good, see something or not, there’s still a haul ahead.

But in a body riddled with general, subjective stuff going on (except for the stuff they’ve determined was wrong but didn’t explain enough, so who gives a crud), this is something that’s clinically objective, and is pretty damned distinctive. I mean… To the point of pretty damned unusual, especially with no known head trauma or surgery.

It could still take weeks, months, years — and at this point, figured out last year would be way too long — but whatever pissed off the existing yucky but certainly not horribly debilitating autonomic issues is starting to show its personality. It’s scary, because it means whatever it is probably isn’t done.  But it can give us some clues as to where to find it so we can deal with it sooner.

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2 Responses to Part of the Solution, or Part of the Participate?

  1. flamom says:

    Empty sella? I have an empty sella – really! Found out about it a couple of years ago. Neurologist had no concerns or explanation. It was something I never heard about, so I googled it. Only thing I could find is it’s related to being short. Well, how about that! :) I do hope you see some improvement soon.

  2. shoe says:

    Oh hai my empty sella’d inlaw… (which in most cases would sound insulting, but not in this case. :) Great sellas act alike.) I guess sometimes it does happen and doesn’t do much of anything (that’s kinda reassuring in a non-reassuring way). Sometimes something squishes stuff out of your sella. I think it’s one of those things like (I read somewhere) 25% of the autopsied population has a pituitary tumor, and some are really ginormous and they were killed in knife fights or freak can opener accidents. It’s also something they don’t usually even *look* at on MRIs (again, how wonderfully reassuring that they don’t look — and that yours stuck out enough that they did… Eeek)

    At any rate, still waiting for the MRI approval. Which after some research on Mr, Shoe’s part, confirms our belief that the hospital is the friggin hold up, not the insurance company. Heh.


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