Sunday, December 18, 2005

The Neuropsychological Evaluation

Being referred by a doctor for a neuropsychological evaluation can't ever be a happy occasion. In my case there were layers of confusing unpleasantness. First of all, having my IQ pinned down was something I'd escaped for 46 years. My family, that supremely formative influence, was not in accord with the late Duchess of Windsor when she voiced an opinion on the impossibility of being too rich or too thin. (If asked they'd say I was always too thin, the Duchess of Windsor undoubtedly too rich for her own good.) What you could never be, in my family, was too smart. If you hadn't won a Nobel Prize or a MacArthur Genius Award you were in one of two categories: a) still showing potential, or b) failing. I knew my IQ had never been what was hoped for and now I had to face directly the possibility of brain damage.

On the other hand, if I couldn't demonstrate some cognitive incapacity my options for financial survival looked grim. Eight months ago my chemical sensitivities had gone nuclear--shooting squarely into the "good luck getting anyone to believe you" range--and I hadn't worked since. The aforementioned family doesn't value sanity, sobriety, or happiness as much as it values intelligence and I dreaded turning to them. My boyfriend's generosity, strained as it must be by the ordeal that had become ours, was the thread by which I hung. I had applied for disability payments through Social Security, but I knew my case would be difficult to prove. My primary symptom was a frightening and debilitating brain fog that wasn't likely to be imaged by a scan. Nothing in my blood or urine suggested crippling impairment. A favorable neuropsych, that is, one guaranteed to shake my self-esteem, was my greatest hope.

My primary care physician, Dr. R., has been something of an agnostic on my diagnosis, Multiple Chemical Sensitivities (MCS). After years of playing her cards close to her lab coat she finally wrote all three words together, in order--after being backed into a corner by a form demanding a diagnosis. It was the first time she had capitalized anything and then only the word "Multiple." She stipulated, on the form, that I might be able to get back to work at any time. Privately she let me know that she was only going by my account, implying that she didn't necessarily believe a bit of it. This is not the doctor you want on your side when facing the Social Security Administration, which takes your word for nothing. Still, at my HMO, she's the best I've encountered. As an institution, it has no use for controversial diagnoses.

Aside from internal conflict as to whether I wanted to be found smart or dumb, there was the issue of judgments being made about my mental health and those judgments being entered into my medical records. Dr. R., when pressed for a rationale for the testing, had mumbled vaguely about finding out what role depression or anxiety might have in my symptoms. The big chief of Allergy had tactlessly thrown out some hypotheses closer to the psychotic end of the emotional-disturbance spectrum. I knew they were both just shooting in the dark, and perhaps hoping I'd become someone else's problem. From a survival standpoint my greatest fears were that I would get formally labeled as a malingerer, or, more likely--given my reflexive, tedious, kamikaze honesty--as a hypochondriac. Either could be the kiss of death for a Social Security application. From the personal vulnerability angle I knew that things might be written about my personality that would have sufficient truth and authority to sting. I had been given some training in conducting neuropsych assessments and hadn't liked the whole endeavor from that side either. If felt intrusive, impersonal, authoritarian, and, surprisingly unscientific.

Given the fears and risks I decided to hire myself a sympathetic psychologist for my assessment--or, more accurately, ask my boyfriend to hire me one, the price tag being $1800. No one is ever neutral on the question of MCS, unless they are ignorant about it, and I wanted neither a naif nor a skeptic probing around my psyche, determining my fate. I chose an examiner with impeccable credentials, one who was also a champion of MCS patients. She turned out to be a charming, diminutive, sweetheart of a woman. She palpably disliked the prying portion of her job and kept it as brief as possible. Her natural warmth overcame any restraint in which she may have been schooled, which suited me completely.

Major problems remained, however. Whatever permanent brain damage I might have incurred, as painful as it might be to confront, it wasn't what prevented me from working. The disabling part of the problem occurred temporarily when I was exposed to things (perfume, mold, magic markers, Xerox copies, etc., etc.), especially when I was exposed consistently over time, when it got a little less temporary. Since the catastrophe eight months back, through making lifestyle changes bordering on the absurd, I had gradually put together hours and then entire days of clear-headedness. The near-normal use of my brain and a semblance of well-being were my most precious possessions. The last thing I wanted to do was run myself back into the ground toward the end of proving I had a problem. Avoiding any further permanent brain damage had to remain the prime objective, however inconvenient it might be.

I had the impression through the grapevine that the psychologist did provocation testing--deliberately impairing people with inhalants to which they reacted and then putting them through the drills. When I asked about it, she said that she had twice allowed people to try this on their own volition. The second time a woman had inadvertently given herself an epileptic seizure by spritzing some perfume. That was the end of provocation testing, or at least the psychologist's endorsement of it. I was relieved to hear it.

However, as the testing progressed I feared she didn't have any other magic for teasing out the complexities. I deteriorated while in her office and thus scored lower on tests given late in our sessions, regardless of the functions and and skills they were designed to measure. How could there be any accuracy to the results, I wondered, if there was no way to track or quantify this shifting variable? Also, it seemed that even while feeling drugged and struggling to keep track of which test item I was on I might still be pulling down at least average scores. I mean the highest office in the land was held by a man who seemed barely able to navigate his way to a podium; could I really claim on the basis of my performance on these tests that I couldn't work? I feared that short of falling into a coma I might test too well.

Despite my worries, the psychologist thought she had gotten reasonable data and seemed to believe my story. We discussed whether she should administer a personality inventory.

"Why should I give you a test normed to psychiatric patients," she reasoned, "when you're perfectly normal and healthy?"

"Well, yes, of course," I thought, with this anti-climax, but something I couldn't put my finger on felt odd. Later I realized that this was an unusual instance in which I was being evaluated by someone of whom I could say the same.

1 comment:

Jonathan, AU said...

Simular experience in Australia. I've had five evaluations and only one was pathetic due to an insurance companies finanial vested interest. The case history and report were grossly inconsistent with the other reports.

My EI doctor advises me that a combination of an IntegNeuro and QEEG are becoming highly effective in identifying impaired brain function to a wide range of toxic chemicals.

My Immunologist has stated that "a blood test to diagnoses MCS is very close..." although it doesn't identify which chemical induced the condition.

I like your writing style, it's refreshing.