I meant to post yesterday, and then y’know, I went online and there were these shiny things and I had to click on them and suddenly I didn’t have the energy. (No, the playable Google Pac-Man logo had nothing to do with it. Honest.)
I am damn sure I didn’t make too much sense on Thursday, and truth be told, not sure how much else there is to add. The neurologist called later that day to request that I bring by the MRI of my pituitary and sella that was done last September. He had conferred with a different neuroradiologist who (I guess) also agreed that something was off in the hypothalamic-pituitary axis region and it’d be helpful to see where it was at earlier in the process. Now, I have a bazillion MRIs on record there… Not a bazillion really, but some that date back three years or more. Personally, I thought the MRI last September was odd looking. I chalked the “all clear” up to the fact I’m have no idea what I’m looking at really, and it’s all tea leaves, but moreso to the fact that the slicing and magnification were not quite the same between the machines. I couldn’t say what looked odd, it just didn’t look like it had earlier.
This time, again, I can’t say what exactly would’ve been weird. My pituitary is supposed have a bright spot in the posterior region — that’s the normal state. Well… it was. But it was, as the neurologist put it, “looking a lot like one of those… symbols… a yin-yang!” Diabetes insipidus is often associated with a lack of a bright spot, or a thickened pituitary stalk (mine didn’t seem thickened). And truthfully, the whole back looked like it was shining, but… you know, it was really yin-yangy. I mean, the anterior/posterior separation looked like it had been made with a black Sharpie, and one side was bright and the other a dingy grey. I can’t say what that is, and at the moment, I think the neurologist (and his friends) looking at it are still thinking along the lines of inflammatory lesion (like histiocytosis, but they’ll probably do a couple more tests for infectious crap, even though it seems most of it has been ruled out).
I thought once the shock of it sunk in, I’d be kind of — freaked out. Nah. Still relief. The chance of that being there and being completely unrelated to much of this is slim to none. Microscopic damage can really screw up your brain, but of course, is not visible. It can do this for years, until it shows. So the fact that there’s a whatever the hell it is sitting right on the area that controls water balance, temperature control, heart and cardiovascular behavior and sleep after all this time ends up being a huge relief.
And seeing that I’m not typing from beyond the grave, it’s probably not an infectious process, it’s probably some immune mediated inflammatory process (like multiple sclerosis, myasthenia gravis, lupus, sarcoidosis and scleroderma — disorders that screw with organs and joints by depositing extraneous numbers of cells, or stripping nerves and muscles of the appropriate neurotransmitters and receptors). I think the neurologist is operating on the idea that those have all been ruled out, so since my thymus was enlarged yet benign, and the thymus is in most cases the last thing to have a response like that (with the possible exception of myasthenia gravis), if it were one of those things, we’d know already. It isn’t. But since it’s the last thing to respond often enough, and now this is rearing it’s ugly head (my ugly head?) it’s damn clear we can know what it is and we have pieces to put together.
There’s also some comfort in the idea that that is the area that they do all they can to not touch these things surgically. One, because there’s stuff that can go really badly (remember, this is the bit in the back of my pituitary and hypothalamus that’s the issue, and… I have issues as it is. That’s a cut as a last resort and then get a million opinions first area.) Two, most of the time they find it isn’t a malignancy, and responds nicely to non-invasive control. Three, if you’re in my boat and they aren’t sure what kind of a process for sure is going on, by this time, it can be figured out through other sites. It is encouraged to seek out and look at any suspicious site in lieu than going brain spelunking. In my mind, I think it’s better to just frickin’ guess really than going digging in. At this point, it’s similar enough set of illnesses that treatment plans often overlap and they’re unusual enough that cautious, intelligent experimentation once things are in a little better state could be justified.
So Mr. Shoe dropped September’s MRI off at the office yesterday. The neurologist said he and the other guy who gave it a looksee wanted it to better plan how to handle things from here (yes, it’s weird looking, and they’re scrambling for a little more visual context, I guess, to spare me unneeded tests and get the right ones done prior to shipping me to MGH). I’m guessing I’ll get an update next week.
I’m actually really okay with it. I think my nagging fear is having them say, “Oh, that’s not your head. Our bad.” That seems really kind of… sick… to me, but at this point it’s nice to have confirmation I wasn’t just a frickin’ wuss. I mean… I know I am not. But c’mon, we all know how it works. Tests repeatedly come back fine, and the hints come from all over that maybe you just are really sensitive to every little change and you should relax. Uh, yeah, that’s why I generally ignore things for a good month or five or twelve before I mention them. And as years go by, and it gets more and more obvious that something’s completely messed up, and there’s no real indication as to why, but you have eight reams of paper worth of medical records following you around… It doesn’t matter how much you know you really do feel craptacular, it looks insane. It is insane. So you do doubt yourself.
Here’s the deal: I doubted so much I went to the awesome psychiatrist here and said outright, “Do you think I’m using this as a cover for something I can’t deal with in some other aspect of life? I mean… I know that somatic illness is unintentional so it’s news to the patient… Is there something that I’m missing?” I don’t know if he wanted to laugh or cry over my asking.
He said, “There is nothing about you, and there’s even less about your history, clinical or in the real world, that would suggest this. There’s lots of evidence to the contrary, actually… Not limited to the fact that you just came in and asked me this…”
This is why I just can’t be too upset.