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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Boom! Crash! Flitter Flitter!

So I’ve been meaning to update you fine folks, but the universe has been especially indifferent about things here. This means a couple of things: I feel crappy and most of the time by the time I boot the laptop I either make no sense or I can’t remember why I did so to start with, and the laptop’s hard drive, which has been feeling rather crappy as well, finally up and went.

I replaced the drive last night, and at least the laptop is much happier. Hey, I take what I can get. Plus, 2.5 inch hard drives are the friggin’ cutest little things.

I ended up taking a few pictures (those of you that got some mailed, these make me look less shitty… well, this camera is kinder thanks to lower resolution — same sort of reason no one wants to watch porn in HD folks — and the light was kinder.) This is one where I don’t look so bad, or even too sick courtesy of my gaze being diverted by a pug.

A picture of a gimpy woman, edited with the GIMP

The pug was incidentally very bull that I kept setting the timer on the camera and then getting up right when she pounced on me. Why? Because mama is awesome.

Penny's Testimonial

You heard it here folks.

Anyway, I am glad I got those pictures. One, my mom knows I didn’t use a garden weasel really now… and because it’s really fallen out. Well… yes and no. Let’s put it this way, and warning, it’s all gonna get gross. I noticed later that day I looked blonder. And my shirt was covered in a gold residue. I thought, wow, it’s raining precious metals!

Yeah. And the next morning, Mr. Shoe said, “You are missing hair.” No duh. But I was. See, like, in spots. Not diffuse, like it kinda had been, like it does when this flares up like it tends to, but in dime or penny sized (the coin, not the pug) spots. And I am kind of… well, it’s cool because my skin feels pretty velvety.

I also ended up making Mr. Shoe take Penny to the vet because I thought something needed expressing. Um, yeah, that would be the spots where my hair is falling out, not Penny’s posterior. My dog was probed by the vet because I… smell.

Honestly, I am really glad I cut the hair, as now I understand why it was driving me batshit.

For those following along (you brave souls) I am headed off to MGH this Wednesday. Gird your loins for me (mainly because prayers and positive thoughts just seem to get me the sort of attention from deities I don’t really want).  The bad news is I feel like hell, and it’s gone downhill greatly since about a week and a half after I saw the neuro here (so since early June). The good news is… well… I am showing all those quirky things that come and go and are sort of borderline there all the time in the nastiest way. The skin, of course… and the blood pressure spikes, and the walking into walls, and… we won’t talk about my neck and hard palate and face. I am sure my droopiness is due to swelling… and since the neuro did spot the cyst and specifically looked for (and didn’t see) any cranial bone issues, I am guessing I either have a lymph node or salivary gland that are being asshats.

Best I can tell, that’s not unusual for what they suspect, nor is it necessarily a bad sign. I mean, I hope it isn’t a skull problem… that would be a nastier problem to tackle. Okay… it’s all nasty, but some things are better than others.

I can tell you this: At this point, it doesn’t matter much. I mean, I think Mr. Shoe and I are both pretty much sure that the local neuro is spot on with the general sort of disorder, and Langerhans’ Cell seems like it is consistent (but the kicker is they all kind of overlap). And I think I’m going to end up going in, and getting a good look at just about every damn bit of me, and treated like they treat people with this stuff. Of which there aren’t many. Um… Well, there are far fewer kids than I’d thought coming through, and adults… they tend to follow kid treatment protocols except that adults seem to not stick in remission all that long and it can kick your ass really hard when it comes back either way. I mean, fine, still not malignant, but it’s not like it has really frickin’ good intentions, either, so they tend to smack it real hard, back off after several months a bit as much as possible, and follow and re-assess.

I think probably the worst bit is that unlike my sweet GP, most doctors don’t ask what the hell it is… I love my sleep doctor, and he kind of thought he knew, I think, and it was obvious he guessed wrong. That’s a hard thing to deal with, really. They don’t teach this in medical school, cause it doesn’t happen that often and you know… you only see it in certain populations. Except when it is elsewhere. This little explanation puts it nicely. And so far… Well, let’s all be girding some loins on my behalf this week, shall we?

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Oh My God! You Killed Sasquatch! You Bastard!

I couldn’t take it anymore. My hairs, the little stiff prickly pointy ones that shouldn’t have been reaching my ears, eyes, nose and mouth but were, got to me yesterday. I asked Mr. Shoe to get some clippers.

He was mortified by the one inch comb setting maximum. I was two inches from taking the scissors we cut frick and dingleberries out of Norman’s hair with and just chopping it. I mean, last night I was miserable.

Mr. Shoe was sad last night. He got up really early and went to Walgreens and got a clipper set.

He went to work. He didn’t want to see.

Do you know why people don’t cut their own hair? It’s hard if you wear glasses. Also, if you don’t have lots of mirrors… the back is kind of challenging.

I am so glad I did it, though. Holy mother of a bearded clam dragon, it feels better. I mean, ears, eyes and face still totally irritated thanks to… something. I think I know what is vaguely. But I can’t do much about that part – I could stop the hair poking and shedding insanity. It helps.

Makes hat wearing better, too. Hats helped with itchy shedding feeling, but forced hair into ears and face a lot.

And showering is much easier (I’m not tangled in my own hair wreckage).

Truth is, it isn’t the worst haircut I ever had. And I could take breaks during the process. I thought I would be a little upset, or feel somewhat… weird. Once it was away from my ears and eyes I was like, “Woooooooooohoooooo!”

My main aim was to be comfortable and have less clean up (once we removed the initial sasquatch remains). Done. I got a bonus where my face, which is normally not compatible with chin length hair, is now so grossly sick looking that chin length hair makes me look healthier. I am really pleased that it doesn’t look that weird. I mean, all things considered.

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Set the Flowbee to Negative 11

My hair is doing another massive migration (to the floor, drains, and doggy intestinal tracts… hey, you asked. Wait, you didn’t. Sorry.)  It isn’t too surprising based on history, what we kinda know now, and the fact that there was a surgery that was pretty frickin’ major in the middle of an event that in general does cause shedding in vast amounts. But I shouldn’t see the Sewer and Water guys out in front of our house and imagine they’re snaking the sewer because of my hair, and seriously, that was my first thought when I saw them last week.

You could tell it was thinner last year (I also think consistency changed, which makes it feel weirder than it probably is). This year, there are a few small bare patches. I don’t like to say that, because it’s an all over thing generally, but there’s a pretty good map of thinness on my head that shows affected nerves and probably sweat patterns.  More than anything it is annoying. It pokes in my already irritated ears, eyes and face, and then makes me feel like I have the crawlies. (So that jumping spider that fell out of my shirt today was a real wake up call… no, it isn’t just your hair. I put the spider outside, by the way. I adore jumping spiders. At least in North America, they have such big chips on such tiny little shoulders.) And of course, the aforementioned shedding everywhere, which is a pain to clean up after, and… yeah.  I have hats and stuff,  and it helps with the head irritation a little, but mostly it’s the fact it is still pretty long for stuff that falls out in ginormous handfuls.

And getting it cut is rough. I mean, I have no energy to do so. Yes, it does take energy to sit in a chair, even if the hair dresser says nothing. More than I have, folks, which is sad.  Plus, they try to style it. Like I would do more than wash, towel off, and comb it even if I felt okay… Okay, like I would do more than that and it wouldn’t still look like a bird habitat.  And if it is falling out like this, then comes the pitching of the products. It isn’t breaking, it is falling out. Different. And even if I were inclined to have extensions stuck on (oh yay, that sounds doubly annoying!) it’d probably be a waste, given that the stuff we’d extend falls out when you touch it, or sweat.

I kinda want to just grab one of those “I have little boys and a husband who could seriously give a rat’s ass” hair systems and set it to four or five and just buzz it off, but I am also a little afraid. Not because it’ll look funny (oh, hell, it will look funny, that’s a given. But it’s nice to make people laugh.)  I’m afraid because I think it’ll seem totally drama llama prior to going in to Mass General next month.  Like I’m expecting something… Actually, you know, my guess is that eventually they will either do some chemo and/or cut the little sucker out of my brain, but I don’t know if the chemo is enough to cause total shedding (sometimes they find, depending on what’s going on, smaller doses of different sorts of rogue disease clobberers in tandem work best). So I do have this annoying feeling that they will know this and think I’m… I dunno… People think dumb things… Like I’d be bracing for it (no, that’s what blabbing online about it is, not shaving my annoying fuzz off). Why do I think anything would seem unreasonable along those lines at this stage? I mean, even if nothing they treated it with made my hair fall out more (or keep it from falling out… unlikely, as just about everything tends to cause that, but at this rate, it might seem like less shedding) I’d like it to be gone for a little while mostly just so damned annoying.

I don’t have to bring up the dogs’ digestive tracts again, do I? Seriously annoying for everyone at home, and the city water and sewer guys, too.

Truthfully, at this rate, might not have a choice, and I actually look pretty good in hats. I am not so much a scarf person, because then I want an eye patch and a peg leg. And a monkey or a parrot… Parrots are easier to get hold of, but a monkey is handy (and opposable thumby!)

No, parrots and monkeys are scary weird smart… And an eye patch and peg leg are not really great with my already unsteady self. But I do tend to say Arrrrrr! and tell Mr. Shoe to swab the poop deck too often when I wear a head scarf. It isn’t encouraged, needless to say.

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Quick Update on Cool Tech and Why Bad Things Happen to Good People

First, the cool tech: I am posting from my shiny new (fingerprint covered, new) Motorola DROID phone. It is great with voice recognition, especially if you speak more clearly than I do. The keyboard isn’t what you’d call wonderful, but it has both physical/virtual input, which precious few smartphones have. Still, keeping it short.

I know why bad things happen to good people. I was thinking… (the soul in question – not anyone in my immediate area – that prompted this thought has had a friggin’ nightmare of a year, and is seriously the nicest guy, with a wife and daughters to match…) It isn’t that shitty stuff happens more often to good people, it is just human nature to notice the shittiness more when it happens to people who are genuinely nice.

I mean, shitty stuff happens to bad people at a similar rate. It’s just that those bastards had it coming, therefore bad stuff is converted to poetic justice. And it never seems like justice enough, but I think it’s a matter of scale.

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Been an interesting few days or so… It had seemed as if the desmopressin was a little erratic. I mean, I always thought it felt that way, but I know it’s more that I’m erratic with the whole antidiuretic hormone vasopressin cycle. It didn’t last long (only about five hours, when it should do 8-12) and if I took a whole one, it was not any more effective (just side effective, ahem) than a half. So I was doing halves when I was just friggin’ sick of peeing every five seconds. I was careful. Thank god.

Evidently, you can still pee a bazillion times an hour in huge quantities and still get yourself all low blood sodium-licious.  I was feeling pretty… nasty, but not like the weird loopy “time’s slowed down” nasty that I had last time out. I actually felt a bit like I imagine the beginning of meningitis or something must feel, or what it must feel like after a lumbar puncture. If I laid on the bed with my spine pretty straight, felt pretty okay. If I propped up a little, or sat upright even leaning on something, or had to get up to pee repeatedly… ugh. Not so much the headache (I have had worse, trust me), but the feeling that I might do a whole Exorcist re-enactment, except instead of spinning, my head would just pop off. And of course, during this process, I was peeing. And peeing. I also felt bony, but noticed my weight had gone up a little Saturday morning, and you know… you couldn’t tell. It was enough that you should have.

Then suddenly the peeing went normal (you all wanted to know, right?) and I thought, “Aw, crap, here we go again.”  In about eight hours, I was feeling loopy-ish, still not like it was… I mean, horrid, but not like it was. I was pretty crap on Saturday, but by Sunday I lost the loopy (now I’m just baseline somewhere in left field) and incidentally, lost eight pounds (in less than 24 hours). I mean, that’s not good news for anyone ever really, not that fast, and I’m wondering where the hell it all was… but I think that might have been the point where the vasopressin stopped being a jerk. And no, I’ve not taken desmopressin since Friday… I probably could, but truthfully, it’s still being better without it than it was with it last week… Erratic. So they’d probably say the diabetes insipidus is transient, because I think there’s certain criteria that SIADHS (Syndrome of Inappropriate Anti-Diuretic Hormone Secretion) needs to meet and… even though the endocrinologist said that had to be going on after the surgery initially, the only thing that I’m sure of is the whole “inappropriate” end of the deal.

Evidently, I am inappropriate. Heh. I don’t know much else… But I will be seeing the actual attending who the local neurologist wanted me to see July 14th. Now hush, please, let me finish. I do not know if we have to do any testing prior to this as follow up to last week’s presentation, or if the clinical conference guys just said, “Let’s just give her to Dr. V, he treats everything… Who’s buying the first round tonight?”  I know that I definitely have to call the local neurologist, because I don’t know if I need to get the CD of my MRI in September back or if they have it at MGH, and I have to let him and the endocrinologist know about this last bit of fun. Technically, I should have gone to the ER, but I didn’t realize what it was till it was pretty much over (I bet it’s still low, but not “holy crap, everyone panic!” low, and sometimes, unaware medical personnel make this stuff worse). So it’ll be anecdotal, I guess, but I kinda think that the endocrinologist knows that sometimes the person in question knows best how they feel here, and nobody wants to mess with her. Seriously, that’s why I like her.

So the local neuro might have more detail. I just spoke to the chick who schedules stuff for the doctor at MGH. I might be getting more news of appointments (via MGH) as time goes on — insurance approvals and departments schedule differently in a place that size, or it might all start here. They might just hold off till then. I know I was discussed (the office lady at MGH said that the clinic resulted, in the very least, at a request for the earliest possible appointment with the attending, which is the July appointment), just not how much I was discussed. I think it’s both kinda good and kinda bad that I can get in with this guy in that short amount of time. I mean, it’s good because obviously I’m not keeling over and it’s not like someone missed that second brain in my skull or something. It’s good and bad, I think, to skip the fellows and go directly to the attending (unless you’re a repeat, and get a new fellow every time. We all know that sucks. Sometimes the youngins have decent ideas, though, and then you can watch the attending squash the curiosity out of their eyes. Sometimes the youngins are stressed out and don’t really think, too. Same with attendings, I guess.) It’s bad because I think that if this guy wants to see you, you are probably… interesting in a clinic where interesting is pretty much par for the course. And really, that’s only cool on the Discovery Health Channel.

And yes, before any one says it,  one of the more likely histiocytosis forms has been on Mystery Diagnosis and House. I’m pretty sure that I’m speaking for the soul on MD as well when I say that it could have just stayed on House and that’d be just fine.

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And Knowing is Half the Battle

…the other half is waiting.

I called the neurologist yesterday, and was actually sorta surprised he called back. I was pretty sure he was implying that he was putting my case through MGH’s clinical conference thingamabobs, which are once a week deals, and I had no idea exactly how long that would take to get lined up. But there’s that part of me that says that he’s a busy guy, MGH is a big place, and computer systems magically lose requests, based on how frickin’ crucial they are, so maybe something fell through and after a week and a half, it wouldn’t be unreasonable to check.

It seems that they do these clinical case presentations on Wednesdays, and today I’m up on the block. Jeez, like my damn ears and face and head haven’t had that ringing, twangy feeling anyway. They all talk, and then they talk to my neurologist here, and then I have a plan to work from.

So here’s the deal: I have what is apparently a benign cyst in the pituitary area. It was there on my MRI in September (the one I thought looked… not like older ones, though I’d be damned if I could say why. I had a couple to compare it with, however). He does not think it looked significantly different this time around… At least, not to the point that flags would raise. Then again, it was missed twice in the first place, so take that for what it’s worth. (Truthfully, I get the impression they tend to spot the ones that are horrendously obvious and dangerous or the ones that are mostly incidental and asymptomatic, and the symptomatic, slightly oddly placed anomalies that present with an odd set of symptoms — diabetes insipidus as opposed to odd cortisol or thyroid/growth/you name it hormones — are easy to overlook. I have heard more people with diabetes insipidus say it was missed the first three or four MRI readings.)

Best I can tell, this is consistent with his suspicion of what’s going on. I am hoping that because I have other stuff involved that’s a little easier to get at, we won’t need to go in after it. I don’t get the impression that it’s necessarily squashing anything horribly (although the process that ultimately makes it grow might be squashing things, which might be why my face feels weird). Usually pituitary surgery for things other than diabetes insipidus result in… temporary diabetes insipidus (I guess it clears in a few months). I haven’t found too many people who have had it resolve if it existed beforehand. All things considered, it is also a small part of the equation, so I’m hoping they can poke skin and lymph nodes and just about anything but that… because from what I gather, inflammatory causes of that stuff (as this apparently looks to them right now) tend to respond to stuff that cuts down on inflammation.

It does all kind of start to add up. Okay… the thymus was just weird, and I guess even if I do have Langerhans Cell histiocytosis (or a non-Langerhans type) it may not have revealed it — because they know people with this stuff have enlarged thymuses much of the time, but it’s hard to tell why because a few have had previous rounds of chemo, which makes things look different. And when they have looked for this sort of stuff in other people’s oversized thymus glands (they do occasionally, I guess),  there’s as much chance they’ll see it there as not, existence of disease be damned. So it’s a weird thing, but not an incongruous weird thing.

For now, I sit tight. They are pretty confident that (this is an awkward thing to say) it is not cancer, even for all intents and purposes it kind of behaves like one. I don’t know how accurate my take is on this, but pretty much all of the histiocytosis type things originate in the bone marrow — they are sort of like leukemia, but then they aren’t. They seem to end up creating and dumping ginormous amounts of cells in places you’d wish they didn’t — usually your pituitary, your bones, your lungs, your skin — but it’s less a cancer type action than an immune response. Not like multiple sclerosis, which causes your immune system to attack the myelin on your nerves and strip it away, but sort of similar. Maybe closer to sarcoidosis, where your immune system randomly attacks and leaves scars and nodules on organs.  It’s a crazy-ass sort of category of disorders that looks like it ought to offer some insight into the link between cancer and immune system dysfunction, because it’s technically both, and technically neither.

You’d think more researchers would want to study that. And with essentially no concrete or remotely suggestive blood markers (just wait for the growths to start), you can see where this is a long haul much of the time. I also have a feeling that treating this will be pretty much the same — whether testing is conclusive for anything at all. I think my doctors are about as done as I am, and too much waiting is clearly no longer a reasonable request. I think it could come together quite quickly, or take a few years to be sure what it is, but at this point, they all are hit with the same set of hammers, with the force of blows adjusted as things change.

I’m okay with that. Then, I also had this weird feeling I am not the first person who reacted to the neurologist telling me that I had a cyst on my brain with the statement, “Ah, cool. That’s good to know.” And yes, so much easier to hear that than that everything was just fine, go home, nothing to see here, move along…

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Whistle, Whistle

I’m going to give a little ring to the neurologist next week, not because this is taking unexpectedly long (I mean, they’re going through everything, discussing what the local neurologist thinks, what they think in light of it all at MGH, and then suggesting tests and forging plans ahead — I mean, I know they don’t let stuff that’s weird and (seemingly) symptomatic in that part of your brain go unaddressed (once it is spotted… I think the pituitary is overlooked or hard to see sometimes, and many growths and hiccups thereon are either asymptomatic, clearly point to the problem and located more forwardly than mine seems to be). Generally, even though there’s something weird right there on your brain, it isn’t something… Well, let’s put it this way, whatever this is is pretty clearly systemic, if nothing else, and my brain can’t exist without my lungs and my heart and vice versa… And this is a case where being on their radar is good, but having the warning sirens go off on the radar because of your case and intiating a destruct sequence  is bad… And I’m on the radar, but not tripping the wires. I am a little concerned though because I didn’t have to sign my life away for records transfer. I shouldn’t have to, I don’t think,  in this particular circumstance (something about the records and being under the same net hospital system, but… I’ve signed forms for this stuff before). I figure most of the forms for intra-system lookyloos were all just ways to cover any one doctor’s ass from the HIPAA regs, but it’s also probably bright to make sure. That, and I feel like hell. Can I put my finger on how? Not really. Numbness in face is… well, annoying and mostly I feel like I was thrown down a flight of stairs that’s being simultaneously hit by a bus that’s being swallowed by a Tyrannosurus Rex.

I am kinda hoping I do hear more this week. I have no idea what’ll be done here or in town or what. I think once they start getting on with it, they’ll get on with it, too. And that’ll freak me out, but hey… At least I’m not leaking fossil fuel all over.

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Organizational Structures

I remembered yesterday that last year (January of 2009) we had tried to wiggle me in to Mass General’s neuro people. Now I understand why we ended up saying screw it, we’ll go to another hospital in town (yes, even my sweet GP said it)… It is one really interconnected organizational structure of clinics and subclinics and overlaps and stuff, and the good news now is that we’re damn sure I overlap in many organ systems, the referring neurologist knows a number of neurologists there and is explaining the case so that they can help navigate to the right clinic, and this time out, we have some idea of what it is and isn’t.

So I can rule out that they’ll make an appointment with the multiple sclerosis branch, or the memory loss branch. or the Parkinson’s/movement disorder branch, or the twitchy left pinky when I hold a pen real tight branch of the neurology departments. And yes, it is almost that specific — down to the left pinky level.

I am holding on, anyway. I think it’ll probably take a little time, because I’m getting the picture the idea is to do what can be done here and refer out for analysis… It is usually faster getting stuff done outside of Boston, be it doctor’s appointments or tests. But sometimes, bigger hospitals have the way cool overpowered toys, like 4 tesla MRIs and stuff, and as we know, sometimes you just need that gadget. I mean, you just really really need it. So I might be sent off for tests while everyone is talking, and then actually see them after they’re real familiar with me and I still have no idea who the hell they even are at MGH.

Two things that are consistently said about the local neurologist are that a) he’s got a personality that’s quite likable (I’ve had some sociopaths, no lie) and b) he’s extremely competent. Usually I was told that because some doctor thought my issues seemed purely neurological, but if he couldn’t find it, he’s wicked competent, so what’s my major malfunction? Well, good news is, I have had doctors I trust say it to me as well about this one in particular, and now he’s feeling invested in solving this problem. Like I tend to get with tetchy custom kernel compiling snags…

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Re: My Brains

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.

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