Surprise… or Not.

Hey, guess what? I don’t have MS or a horrible brain squenching tumor made of tooth enamel! For some reason, everyone still thinks that sort of proclamation doesn’t sound completely lame to a patient in this boat.

I know there are many patients in similar larger boats. Not me, it is clearer than day that as much as I wish I needed a bigger boat, I have a frickin’ plank I share with a few others.

And I don’t know why I expected differently… I guess I didn’t, but I know deep down I really wanted to walk out of MGH with a clear answer and feeling better from treatment in less than an hour. I know that’s completely unrealistic. I know that what happened was really about the only logical positive outcome.

And it was positive. The neurologist (and I saw him, not one of the fellows) was seriously a good guy. He listened, poked, and because I look as spectacularly shitty as at least half of the people in the waiting room (the other half were drivers, support, or looking for magazines) he took me seriously when I said, “Look, I know for all intents and purposes it doesn’t look like I’m dying based on even the weird imaging. I know that at this stage that might not mean a lot though.”

Um, so I don’t have a neurological disorder from trauma, infectious/viral/bacterial agents, or an auto-immune neurological disease. My neurological problems then are symptoms and indications something else sucks.  He has not seen something that behaves quite like this, though.

Is histiocytosis a possibility still? I think in an odd way his ruling out by observation and history the other suspects (tuberculosis, sarcoidosis and other nasty unusual things) he left the single set of histiocytic disorders on the table. But he’s not really even seen kids with it (there are I guess about 1400 kids in the US with it at any given time – adults might be a quarter to a third of that figure) so he didn’t feel comfortable (I appreciate this. It bums me out, but I do appreciate it) saying anything beyond the fact that adults do develop it, and he didn’t know how I fit in with that beyond the observation I don’t quite mesh with an infectious or rheumatological multi-system neurological profile.

That means I am now going to see a neuroendocrine guy (I think just to do one last sweep of any possible endocrine stuff. My posterior pituitary is busted, and I’ve had more tests done on my adrenals, thyroid and stuff than I care to think about. Your pituitary’s patootie goes last. I still have a working thyroid. I know.  They are always testing the hell of it. Also, I still don’t have Lyme, and my chances of having histiocytosis are greater than the odds of my ANA panels being clear – completely – every time they have been tested.)

I am also going to Dana Farber, it seems. They have a pediatric histiocytosis department, and because it is rare I think they are okay talking to doctors and possibly referring/handling patients who are young at heart or really short. I can fit either description on a good day, and the latter whenever.

It is weird, it is multi-focal, and no one is saying it isn’t needing addressing anymore. It clearly, clearly does. It’s just it can’t happen fast enough.

And here we go again…

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One Response to Surprise… or Not.

  1. Caroline says:

    snicker,snicker. You go girl!
    All of this from the dynamic duo who had to beg for the first referral. Love from home in FLA

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