I started walking into walls nine years ago. Somehow I just end up taking corners in my collar bone, or rubbing shoulders with the wall in hallways, or slamming my hand with all its rings into metal doorways and railings. I know everyone does this kind of thing from time to time, but I do it a lot.
For years there were also whispers of intermittent numbness here and there — on my shin, around my right eye, on my right cheek, in the middle of my back just left of my spine. At some point over a year ago, I realized I was having trouble picking up a small key and opening my desk drawer at work. Every time I unlocked or locked my drawer through the day, I felt vague dread that something fundamental was wrong with me. Multiple times a day, I swept that worry under the carpet where it could join other vague doubts and fears and undermine me insidiously.
Whether these odd little facts will turn out to be significant foreshadowing in the story of my life remains unclear. What I do know now is that an aberrant process has disrupted my central nervous system in the last several months. That aberrant process may be multiple sclerosis.
Last summer I knew I was entering a time wherein my metals would be tempered. At first a layoff seemed imminent. Then divorce. In each instance I saw the storm coming from a distance and did my best to confront whatever fears I had about it in advance, learn what I could about myself and ride out to meet it head on . . . like some kind of karma warrior, or so I fancied.
Both of those storms ended up dissipating. The layoff storm passed me by. My husband and I are back together after a few months of separation.
What arrived instead were physical symptoms. When I googled them, they suggested possibilities I was not ready to face. For one thing, my right hand went numb. Suddenly both hands felt like paws. So clumsy, I was dropping things, missing targets, having trouble grasping and opening things. And there seemed to be a prickly stocking over my right hand most of the time. And at night both hands were always going dead and waking me up. Frankly, my leg below my knee was sometimes going numb as well. That undermining dread crept out from under the carpet. But no — carpal tunnel . . . that’s what it was.
If I weren’t doctor phobic, I would have gone to the doctor right then and hopefully had the wrist surgery that a co-worker had, getting off eight weeks from work while she was at it. But there was already something subtle and sneaky eroding my hope of that relatively easy outcome. My right leg felt heavy and sluggish. The sole of my left foot hurt to walk on. I told myself the sluggishness was my imagination and I just needed new sneakers.
By January the heaviness and lack of coordination in my right leg was undeniable. I was walking funny – probably not so much that casual observers would notice but it was clear to me. My feet were often numb and felt like bricks. Walking on them, I just had to trust they were in the right position to meet the ground. Sometimes I wobbled and almost fell over. When I was resting, both feet and calves often went into painful spasms – my toes were making involuntary gangsta signs. Soon there were cell phones vibrating in my calves and feet. Putting on pantyhose or tights was difficult since it involved coordinating the movement of uncoordinated extremities. Meanwhile, both arms felt heavy – it hurt to lift them to put on a jacket or wash my hair. And my hands and legs became stiff super easily – it was difficult to drive, write by hand for more than a paragraph, hold a phone to my ear or rise from a cross-legged position, at times from a chair. I felt overwhelmingly fatigued on exertion and dopey in the afternoons at work.
I don’t want to ramble on about symptoms, but I do want to give a sense of what I’ve been experiencing because neurological symptoms can seem both routine and ridiculous to someone who’s not experiencing them piled up at pathological levels. At first I was afraid to acknowledge them. Then I became fascinated. Maybe they’ve become an obsession – a scrying device used to divine what’s happening in my body. I’ve been told to keep a log, but obviously this is not the place.
Suffice it to say there has been an evolving catalogue. Thankfully, the original paresthesia and spasms have subsided now.
Long story short(ish), I put aside my doctor phobia and saw the doctor who is supposedly my PCP. She sent me to a neurologist. Since then I’ve been through a marathon of tests. I’ve been to more medical appointments in the last three months than I have in the last 15 years. At this point, differential diagnoses have been ruled out via blood tests and so forth (though there is some compression in my neck). I’ve also passed all the neurological lab tests except for the most important one: the MRI showed “scarring and inflammation,” as my neurologist called it.
One thing I’ve learned about multiple sclerosis is that there is a complex set of diagnostic criteria that must be satisfied for a definite dx. Most obviously, there must be multiple demyelinating instances, disseminated in time or space. MS is a repeat offender — not a hit and run. And it is far from easy to diagnose.
As I understand it, I’ve got one objective area of “scarring and inflammation” visible on the MRI and one episode of symptoms suggestive of demyelination. That’s an isolated instance. One hit, at least for now.
My neurologist was putting a positive spin on things when I met him this week. He was laughing that I aced the memory test after being worried that my memory was slipping along with my coordination. (I attribute the memory test results to basic occult training, BTW.) “Do you have anxiety?” he asked. Um…you could say that. It feels like an alien has moved into my body, and the external world has not responded with a definitive answer that addresses the cause and validates my perception of what I am experiencing. I feel alone in the dark with a mysterious destroyer. At the same time, I am wondering if I am crazy.
When I asked him what could have caused the “scarring and inflammation” visible on the brain scan, he stiffened. “I don’t want to scare you before your summer,” he said, “but it could be MS.” Of course, I knew that. I saw MS as a storm in the distance from the beginning. At first I couldn’t face the possibility, but since I saw “r/o MS” in plain letters on the script ordering the first MRI, I’ve come out of hiding and started riding out to meet it. Maybe I’m wrong, but that’s what I suspect this alien companion of mine is.
So my neurologist is sending me for physical therapy this summer. No lumbar puncture at this time since my visual evoked potentials were clear. He is conservative in this regard, and this is one kind of conservatism I like. In the first week of September, he is sending me back for a second MRI looking specifically for changes suggesting MS, with and without contrast dye. I agree with this plan, mainly perhaps because it doesn’t involve a spinal tap. That’s where I stand now.
I don’t mean to dramatize my personal story. The important thing is this: whether this storm ends up skirting me or hitting me dead on, I’m learning things about myself as I ride out to meet it. Time and time again I’ve seen that a beautiful strength emerges when you take up the hero’s mantle in your mind’s eye and face a fear that has long been undermining you insidiously. You are bringing light to the darkness. In your own way, I think, you become a pioneer of light in the universe.