If you’ve been reading Kittywampus for a while, you know that I’ve had some weird health problems ever since Inauguration Day (a coincidence that still amuses me, when I’m able to laugh about my problems). For a while there, I thought I was losing my ability to think straight. Maybe I did lose it; you be the judge! Where I’m sitting, nearly nine months into this, I feel less foggy and stupid, and my energy is better, though still not great.
Still some problems persist, including “proximal muscle weakness” – that is, weakness in my shoulder and thighs – and a strange, mildly unpleasant tingling sensation in those same areas, plus tingling around my mouth and on my scalp. Odd tingling often signals MS (says the Google), except that an MS specialist at OSU already ruled that out. (Beware: the Google will correlate almost any symptom with MS.) The tingling could even be due to lingering anxiety from last winter’s scare. But the proximal muscle weakness can’t be so easily explained.
So Friday I traveled to OSU in Columbus for an EMG. If you’re squeamish, this might be where you stop reading, because the test is one that Dr. Frankenstein himself probably invented. It has two parts. First, electrodes are attached to your skin above nerves and you get zapped with a current; instruments measure the transmission of electricity through your nerves. And that’s the easy part. In the second half of the test, “thin” needles (described thusly in the patient info package) are inserted deep into your muscles to measure conduction in those nerves that can’t be reached with the electrodes alone. The needles pick up on your nerves’ electrical impulses. And even this is not the hardest part. The doctor has to wiggle the needles around and (as far as I could tell) push the needle successively deeper. In order to get a reading, the needle logically has to be next to your nerves. Then you’re asked to move and contract the muscles while the needle is still buried in your flesh. Then you’re told to relax. (What?????) This continues for somewhere between 45 minutes and infinity, with brief periods of rest while one needle is removed and a new one is inserted.
The patient info sheet describes this process as “uncomfortable.” Ha ha ha ha ha! Always be very suspicious when a medical test is described as uncomfortable. It’s code for “this may hurt like a sonofabitch, but it’s not officially ‘painful’ so you won’t be offered any pain relief.”
I’d had an EMG once before in the late 1990s, when I was having carpal tunnel-like symptoms from too much laptop use, so I knew the code. When I told the neurologist I’d experienced an EMG, her face fell. She knew that I knew. And what I knew was this: Apart from having a baby, this is the most pain that I’ve ever voluntarily submitted to in my life.
But oddly, once she got down to work, two things were true all at once: The needle section of the exam did hurt like crazy. And it wasn’t so bad.
Here’s what I think helped. Birthing two babies helped reset my pain-o-meter. An EMG can cause pain as locally intense as labor pains, but it’s in a much more confined area. Breathing slowly and deeply helped, even if it mostly just kept me from yelping or keening. The worst of the EMG pain is also comparable to bad back pain, but unlike when I was in labor or had back pain, I wasn’t expected to walk around. Also in contrast to labor or back pain, the EMG was scheduled to end at a particular time.
I think that my recent experiences with acupuncture helped, too. I’ve gotten accustomed to needles piercing me every other week or so. The EMG was quite a lot more painful, but I imagine it also released more endorphins as a result. I asked the neurologist if anyone had ever tried using acupuncture prior to EMG for pain control. She didn’t think so but agreed it would be an interesting study. I think it would be a pretty hard sell; most people would vote for minimizing the needles by any means.
It helped that I know enough about dread neurological diseases to be grateful that my nerves are capable of feeling pain.
It helped that the tech who did the zapping portion of the tech and the neurologist who wielded the needles were both kind people with a Zen-like aura. The same was true of the neuro in Berlin who administered my first EMG. I wonder if there’s something about the field of neurology that attracts calm and gentle souls.
So I talked with them whenever I wasn’t breathing through the pain, and I asked a lot of questions, because I know that distraction is my friend in managing pain.. I learned that the big, tough, muscle-bound men have the hardest time with the electrodes, because the muscle serves as an insulator from the nerves, and the current thus needs to be stronger. I learned that neurologists are deeply divided even on how to categorize some diseases. I learned that my doctor believes we’ll someday look back on EMGs and today’s cancer treatments and wonder how humans survived such barbarism.
I learned that my hand and foot can be made to leap and twitch without my volition, which raises thorny questions about free will: If we’re ultimately a collection of electrical impulses, how can we conceive of self, morality, and free will? Couldn’t we be made to love, nurture, and kill by means of electrodes implanted in our brains? This sounds like the stuff of sci fi – until you’re watching your foot kick without any control over it.
Most of all, it helped that I am desperate for an answer to why I’m still sick. The neuro said she’d start with a study of my left leg, and if I was able to continue, she’d check my back, and only if I was still all right would she look at my left shoulder and arm. It helped, too, that I knew I could withdraw my consent at any moment. So we kept going, and by the time she got to that tender flesh at the side of the hand below the pinkie, I understood why she hadn’t started with my arms. She pulled that needle out, and for five minutes I couldn’t tell it was gone.
I have to say, I was brave. This is unlike me; I am tender and juicy, like my nom de blogue, Sungold. I am not tough. And yet, I did not whimper. I did not cry or swear. And I stuck it out until the doctor ended the exam, pronouncing it perfectly complete.
In the end, we did know more. We still don’t what is actually wrong with me. (My wacky thyroid remains the most likely culprit, but lots of evidence doesn’t fit). We do know that I don’t have nerve compression near the spine, nor do I have any of the diseases of the peripheral nervous system. There’s a whole family of disorders (for instance, chronic inflammatory demyelinating neuropathy) that slowly disable and potentially kill you by destroying the myelin that normally protects nerves.
Most of all, best of all, there’s no evidence that I’ll get progressively worse, rather than better.
And so, even though it took the whole weekend to stop feeling achy all over, and not just where I’d been poked (can you spell T-E-N-S-I-O-N?), I’m feeling so grateful and lucky. I celebrated like any good post-9/11 American – and went shopping. I felt so elated, relieved, and brave that I even bought pants and bras. If you see me around town this week, you probably won’t get a peek at the bras, but I’ll likely be wearing my new red cords. Yes, red – on my bottom! – proof positive I was feeling invincible.
Or to put it another way: It all could have been srsly worse:
Fortunately, NOT my experience.