Not Another Doctor. Anything But That.

April 18, 2013 at 10:13 pm (Uncategorized)

My left leg is numb. It’s like someone flooded everything below my knee with Novocain. I’m stumbling on it, and have taken a couple of nasty falls when I can’t maneuver on the stairs.

It’s probably the neurosarcoidosis—that evil presence embedding itself in my brain and on my cranial nerves, causing vertigo, episodes of blindness, shrill ringing in my ears, and pain like none I’ve ever experienced. But what if it’s not? The assortment of immune-suppressants I’ve taken for the past nine years make me much more susceptible to various frightening cancers than the average person. What if some new foe has decided to pay my brain or nerves a visit?

I suppose I should find out if I’ve got some tumor growing in my head. Which means I should probably go see a neurologist, preferably one who’s at least heard of sarcoidosis. This means medical travel—the least exciting and most exhausting form of tourism on Earth. I hoped I could just go see the Sarcoidosis Guru in Ohio. He manages my treatment. But he’s not a neurologist, and he cautioned that if I signed up to get seen by a neurologist at his big teaching hospital, I’d end up becoming a guinea pig for all the fledgling neurologists in training.

I’ve been through that teaching hospital drill before. Having a rare form of a rare disease means that you are an Interesting Case. All the neurologists-in-training (adolescent White Coats) are summoned to gawk at you. Their wise elders think perhaps you’d be a good data point for their next paper or grant application. So they test the hell out of you, especially when you have private insurance.

I can’t go through another round of testing for the sake of testing. I am exhausted from nine years of sickness, treatment, and doctors. For the first few years, I endured the teaching hospital routine. I wasn’t experienced enough in Chronic Town to have learned the key question to ask when the wise elder specialist at the head of a pack of baby White Coats proposes to scan you, shoot you full of dye, hang you upside down, cover you in electrodes, jam needles in your extremities, hook you up to monitors, try to induce seizures, try to induce fatal heart rhythms, give you hand weights to pump while trying to induce fatal heart rhythms, and/or siphon off enough blood to feed a pack of hungry vampires—all of which, in my confused hope they would help cure me, I agreed to. The million dollar question to ask before they run a million dollars’ worth of tests on you is: Will the results of this test change your treatment recommendations? In other words, are you studying me for the sake of studying me? Or will whatever expensive and unpleasant test you are proposing actually help me?

The Sarcoidosis Guru thought a neurologist in Salt Lake City would be the closest and best place for me to get my dead leg evaluated. So in June, I am heading down there, even though I really don’t want to. I’m practicing reciting my million dollar question for when this guy says he needs to perform a test. Even so, I know I won’t leave Salt Lake City without being scanned and poked and probably bled. Some testing is going to be necessary to try to get to the bottom of the numbness in my leg. I know this. But still, the idea of it—donning the stupid, flappy hospital gown, having my blood drawn, hearing the thunk and whine of the machines, reciting my medical history—just makes me more tired than I already am. And I’m pretty darn tired.

I have a couple months to practice, though. Will the results of this test change your treatment recommendations? If the answer is no, I will say politely but firmly: No thanks. I am not a data mine. I am a person.

I can do this, right?

Have any of you had experience being tested for the sake of being tested? How have you dealt with this?

2 Comments

  1. Leanne Shirtliffe (Ironic Mom) said,

    Twenty years ago, I had a complicated surgery by the top ENT guy in Ontario (where I lived there). The last thing I remember saying before I went under was, “Why are there so many of you here?” Yes, it was a rare surgery and there was an audience.

    I can’t imagine dealing with this for 9 years and for so many parts of your body.

    You nailed the million-dollar question.

    Holding you up to the Light, my friend.

  2. Kathy Scruggs said,

    About 25 years ago I volunteered to be an outpatient guinea pig for panic disorder for 3 years at the Nat’l Institutes of Mental Health. I had started experiencing some awful panic attacks. I knew they had a research project but had postponed this venture for a few years because I understood that they would induce panic attacks. Once the panicky feelings became more frequent and in different environments I signed up. Most of the panic attacks that I had while in the program were less painful because there were doctors and nurses around. I thought that the researchers might learn something to help others. I did appreciate learning as much as I did about this illness but there’s no doubt that I was a case number and I was helping them not vice versa.

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