Dec 17, 2008
How I lost faith in doctors and myself.
It was 2003, and many odd sensations and inconveniences convinced my PCP to send me to a neurologist -- back to Dr. B., my old friend who had empowered me about migraine prevention and thought my hemiplegic migraine (or maybe TIA) was serious enough to warrant a same-day visit if it recurred. Empowered by the Internet, where my constellation of symptoms pointed to MS, I was thrilled when I got in to see Dr. B. within a month due to a cancellation.
"What brings you here?" I handed him a typed, detailed history and explained my symptoms, using medical terminology. (I teach college classes involving human anatomy.) WRONG MOVE! He was immediately suspicious, asked if I'd been on the web about this, and proceeded to downplay or dismiss every symptom. The tremor? Inherited essential tremor, not to worry. The vertigo that's better when I lie down? Benign positional vertigo, not to worry. The dragging foot (that usually comes on after walking 45 minutes or so)? Didn't happen in his hallway and no foot weakness detected, not to worry. The urinary problems and constipation? Probably have some "problems down there" so see my gynecologist. (Yes, he actually said "down there.") The lightning-strike pain shooting up my leg and vagina? First of all, that's impossible since no nerve runs through both parts, and anyway, some women get discomfort like that from wearing their jeans too tight.
"But I suppose we'd better get an MRI, eh?" he said, clearly humoring me but not in good humor at all.
The MRI (with contrast) report from him reads, "This was normal." I asked if my hemiplegic migraine / TIA thing showed up at all. "No, and there's no way it would have. It wasn't a serious thing." He handed me the films, suggested I seek counseling for my stress level, and ushered me out the door.
Lesson learned: Patient empowerment is great WHEN THE DOCTOR IS DOING THE EMPOWERING. Just don't try it yourself.
Later that year I made an appointment with the only other neurologist at the clinic about my left foot, the draggy foot, which was now getting numb in a predictable pattern, with the numbness level rising slowly with the passing weeks. Dr. N. did a nerve conduction test, but clearly didn't believe me from day one. When the electrodes produced EXACTLY the sensation of lightning I'd been feeling, I said so, and he told me that was impossible -- people can't feel the impulse because it's too fast.
He also suggested that I was probably just under a lot of stress.
I was so angry and discouraged that I never called back for the results. For the next five years, the only times I sought medical help were (a) for basic upkeep (Pap tests and mammograms) and (b) when I broke my ankle -- the draggy one. When I went to my PCP for the upkeep, I'd tell her about my latest oddity, like extreme toe cramps and falling down in IKEA. I hoped these would get into my chart so that someday some doctor would put it all together. But she kept saying, "these things don't excite us."
It was clear that there was some note in my chart about me being a hypochondriac. So I stopped telling her anything except what she wanted to hear. "How are you today?" "Just fine, thanks." "How's it been going?" "Just great, thanks." Our visits went much more smoothly without that parental disapproval thing.
In fact, I started to think maybe it was all coincidental and not a big deal.
Even after I lost sensation in my lower bowel.