neurotranscendence

…life on the synaptic firing range

Name:
Location: Los Angeles, United States

Bent but unbroken Southern California native seeks understanding, companionship, and resonance along and off the beaten path. Teresa plays well with others and makes every effort to perform to her potential. Usually. *processed in a facility that processes nuts and nut products

Saturday, February 25, 2006

once more into the breach

Wednesday night I passed out on my way to bed. Happily, I was standing face-to-face with my partner at the time, so she saw my eyes go dead and my face grow pale and caught me before I could fall, then laid me down on the nearby divan. (Doesn't that sound fancy? Divan? And now you might be thinking we're all regal and shit, but the divan is a piece of furniture my partner's parents shipped to us when we had their dog because, well, their dog really liked to lie on it. So our fancy divan, the one I just fainted on, is more properly a dog bed.) Then we slowly made our way back to the bedroom in a sort of waltz pose, my partner leading, walking backward with me facing her, my arms about her shoulders. She repeatedly called "H!" (short for "honey") and I repeatedly said "OK" to let her know that I was cogent despite my undoubtedly dusky appearance. She brought me a teeny glass of orange juice and cruelly refused to let me get up to brush my teeth when I finished it. And after she extracted a promise from me to call for an appointment with my doctor in the morning, she went to e-mail my friend G to cancel our breakfast plans.

This most recent blackout merely caps my frustration as I approach the one-year anniversary of "the precipitating event," a seizure on March 16, '05, wherein I lost consciousness for several minutes and awoke mentally and physically compromised in ways that persist, in their annoying waxing and waning fashion, to this day. Over 11 months later—after a head CT, two MRIs, a sleep-deprived EEG, a spinal tap, and enough blood draws to drain a medium-size child—the official entry on my chart is "possible MS" and the unofficial word in the doctors' lounge is "nine kinds of crazy." The latter pronouncement came in the fall, six months or so into my diagnostic purgatory, from a man I like to call "Dr. Malkinesis," a neurology subspecialist in movement disorder who spent every bit of 15 minutes with me before he wrote me off as having a conversion disorder. According to the National Library of Medicine, ahem:

"Conversion disorder is one of several types of somatoform disorders, in which psychological problems produce physical symptoms."

Here's the good part: "Risk factors include a history of histrionic personality disorder."

Isn't that utterly fantastic? I've been diagnosed as hysterical, a trait I'll emphasize by ending this sentence with an!

The good news about this diagnosis, as opposed to, say, "malingering," is that I'm not being called a big faker. Apparently, I would have no more control over CD than I would over MS. Also in the good-news department, the NLM emphasizes that the symptoms of CD can last "days or even weeks," so I'm really, really due to be over this thing any time now.

I was willing to believe I was a head case for a few months. I didn't like it much, but it was an explanation for the randomly relapsing and remitting symptoms, a pattern that, while a hallmark of MS, isn't enough for a diagnosis of same without objective evidence of demyelination, which was happily lacking in my brain MRI and spinal tap. "Mental" is way better than MS anyway, right? So despite my internalized stigma, I embraced the conversion disorder theory with as much gusto as I could muster and looked to my mental health team for a timely resolution.

That was about four months ago, and we have yet to answer the essential question: Why? A conversion disorder is classically a reaction to a psychological conflict which the symptoms help to resolve—i.e., paralysis of a hand before a piano recital in the face of extreme stage fright. If my syndrome is genuine CD, I should be able, with therapeutic assistance, to identify a root psychological problem, something that my subconscious is trying to help me resolve through physical compromise—in my case: a certain torpor of my left side that makes walking slow and labored, numbness in my extremities, mental fog, and a mild intention tremor in my right hand. If, as my psychiatrist suggests, my psyche is herein demonstrating impressive creativity in its approach to problem solving, I would have to insist that it stop being such a show-off and give the abstract expressionism a rest. We get it, psyche: You're very, very clever.

What with all the chirping of crickets on the psychological front, I'm not so much buying the CD diagnosis these days. I had a minor meltdown about it last Sunday, crying through lunch at PF Chang's, trying to pull myself together when the waitress uncertainly edged near to see whether everything was OK. No, it's not OK. It's very much not OK, but the dan-dan noodles are delicious, thanks.

Tuesday morning, just two days after that emotive lunch, I felt a big face-plant coming on as I stepped from the shower. I lurched the few feet between myself and the bed and lay down. I tried several times to get up and continue getting ready, but each time I met with that blood-rushing vortex that threatened to take me down. So I called in dizzy to work and went back to bed.

Then Wednesday night: the latest blackout.

When I saw my GP Thursday morning, he being the most likely doc to extend me any further benefit of the doubt that I'm not completely mental, he flipped through my now-voluminous chart and noted my "history of fainting since childhood." (Histrionic personality disorder, anyone?) No, I said, I had told the neurologist that I experienced exactly two fainting episodes in high school and no other losses of consciousness between then and March '05, more than 20 years later. "Oh," he said. "Well, that definitely makes these recent episodes more compelling."

We went over some of my less sexy symptoms—i.e., urinary urgency—and we talked about what kind of imaging had already been performed: the head CT and the brain and neck MRIs. He went back to his office to look at them, and when he came back he said, "You know, your neck MRI was soft tissue only; we've never looked at the bony structures."

Funny thing, my partner and I were just this week speculating whether there are different types of MRIs depending on what docs are looking for. Despite our scant knowledge on the topic—what we had seen on television—we tentatively decided that there is just the one kind of MRI that shows everything at once. But the inaccuracies of TV medicine are all too apparent to me when I see a whole team of neurologists on "House" hovering about the monitor during an MRI, solving the most baffling cases right there in the computer bay. Each of my MRIs were attended only by a wisecracking technician whose only concerns were whether I had any steel plates or pins in my head, whether I wanted the AC on while in the tube, and whether I was claustrophobic. No, no, and no.

"Do you think it would be worthwhile to do another neck MRI?" I asked my GP.

Yes, the answer was yes. In fact, he expressed surprise that my cervical spine hadn't already been looked at. Hallelujah! Someone still reserves a spark of faith that I'm not completely insane. Enough doubt that he's also sending me to a cardiologist—"just to rule out that kind of stuff"—and ordering nerve-conduction testing, wherein techs will insert needle electrodes into my muscles to measure their response rate when flexed and such.

The implied caveat is that when all these tests come back normal I'm going to have an awful time convincing anyone in the Kaiser system that I'm anything but certifiable. But still, each diagnostic avenue represents a way out of this Twilight Zone town Psychosomatia—and the roads can't all be cul-de-sacs, can they?

It's odd, this validation I feel over the promise of further testing. It has struck me that I'm declaring victory for a battle in a war I can't possibly win—the pyrrhic struggle between sick and crazy. My partner, bless her heart, pointed out to me that I CAN win, that they might find something wrong, though easily treatable, and return me to my former self. Then all of it—the symptoms, the stigma, the fear, the uncertainty—becomes nothing but a tale about my baffling year of sporadic disability, dead-end diagnostics, and the doctors who threatened to drive me over the crazy cliff.

I do so look forward to laughing about this someday.

6 Comments:

Blogger sporksforall said...

All I can say to this (vis a vis your last thought) is me too.

1:08 PM  
Blogger treecup said...

I didn't know about the intention tremor. I have, as you no doubt have noticed, tremors in my hands and legs that are worse sometimes and not so bad other times and all they can tell me is that some folks are just that way. I just wish everyone would stop asking me if I am nervous. Asking me if I am nervous makes me nervous.

4:09 PM  
Blogger Slangred said...

Scout, I didn't have a clue you had another blackout Wednesday. I wish you had said something when we saw you. Because we care, and care deeply about you. This really sucks. And you're not crazy. At least, not that kind. :) JHC, I hope the folks at Kaiser figure this out. The Year of Shit is officially over, dammit.

12:18 AM  
Blogger bryduck said...

I'm a little late to this party, but I hope you still look in on your old posts obsessively like I do to see if anyone new has added something. Please, please, please don't let this beat you down any further than it has already! You have a wonderful partner, some groovy friends (imho, of course), and if anyone in my circle is going to be garnering sympathy, it's got to be cancer-boy, ok? On the other hand, don't for a second think you have to hide this from anyone (like your above-mentioned friends) for any reason. Remember all the laughs we had about me when I was in chemo? Yay. Er, there isn't only a sick-crazy continuum for you. There is also a sick/crazy-well continuum, and that's the one you need to think about.

2:44 PM  
Anonymous jkt said...

i'm really sorry that you have to go through this, and i just wanted to remind you that i care, and am always wishing you (to be)well (well! well!). i'm thinking of you,
jt.

4:24 PM  
Blogger psychoselph said...

Laugh about it? Somedays i feel that hope, and other days its hopelesss.

Curious: have you no temtpation to self medicate? like with alchohol?

8:35 PM  

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