Getting Diagnosed

It's pretty clear that I had MS for awhile before I was willing to acknowledge anything was amiss. I began tripping regularly when I stepped off the curb to cross the street. I would regularly catch my toe on irregular surfaces and topple on to my face. Though I'd never been much of an athlete, I suddenly lost the capacity to do the few things I' been marginally proficient at. I'd been a kayaker but suddenly couldn't keep my small craft upright. I couldn't hit a soft ball even when it was gently lobbed to me. Granted, I'd never been much of a hitter but my uncanny ability to repeatedly miss the ball seemed to defy even random chance. These symptoms, though unsettling, fell well within my broad capacity for ignoring. What prompted me to consult my doctor was the sudden arrival of a prickly numbness extending from my right shoulder to the middle of my right thigh. Though I could move my arm and hand, I had lost most of the feeling in these extremities. I pretended that this was not occurring until I had lost so many things from my right pocket that I needed an excuse for the missing items more than I needed to deny the numbness. A curious development, I finally acknowledged to myself, one that I would reluctantly need to investigate.

So began my foray into our complicated health care system. I was, I suppose, one of the lucky ones. I had health insurance. My "primary physician" the gatekeeper in this system was baffled by my presenting symptoms and thought a neurological consult warranted. A month later I presented myself for the specialists perusal. I'd not visited a neurologist before and I wasn't sure what to expect. My doctor as it turned out was a very attractive young woman. She introduced herself and the attractive young woman trailing respectfully behind her. The younger of the two was an intern doing her neurology rotation at the clinic. Would I, the Neurologist inquired, mind if her student sat in on the examination. Of course not, I replied. I am after all four square in favor of educational opportunity. A full explication of my symptoms ensued along with a variety of physical assessment procedures. I was surprised to learn that this specialty, concerned as it was with the brain and central nervous system, necessitated a rectal probing as a part of it's it's I investigative procedure. But, I'm a big boy, I understand that human biology is a complicated matter. Perhaps an assessment of my tolerance for humiliation was an important part of the Neurological work up. But they were doctors you say, scientists, they have a strictly clinical interest in your hinder. I have friends who are doctors. I know for a fact that they are no less amused by another's saggy boxers and posterior than you or I. At the conclusion, my Neurologist said she would call me when the lab results were in and let me know what she thought. Both of these perky young women shook my hand, indicating they'd enjoyed meeting me. I slunk timidly from their office.

I got that call a week later. She, my neurologist, thought there were some unanswered questions relative to my examination. She wanted me to see her colleague who she believed might be better able to make a definitive diagnosis. The vagueness of her comments did not strike me as good news. Maybe I was dying. Maybe she thought my keister so unusual that she wanted her colleague to have a look. The specialist's specialist appeared to have some definite suspicions as to the nature of my difficulties. It was from him that I first heard Multiple Sclerosis mentioned as a possibility. Multiple Sclerosis, it turns out, was his area of speciality. If there was further intrusive probing in the offing this was the kind of scientist you'd want doing it. There was nothing about him to suggest he was of our species. He had no interest in doctor patient banter, no "bedside manner", in fact, no discernable interest in me at all. He was all business, and I was an as yet uncatalogued bit of pathology. At the conclusion of our examination he did speak. He indicated that we needed to do some additional testing to "rule out" Multiple Sclerosis. I was somewhat encouraged until learning that being "ruled out" in medical parlance does not mean that the diagnosis is considered only a remote possibility but that it is the likely culprit. When they want to rule something out you're pretty much cooked. He wanted me to have an MRI scan, and he wanted to schedule me for a "lumbar puncture".

The MRI (magnetic resonance imaging), though a bit creepy, was painless. For those of you who've not had the experience let me explain this marvel of contemporary medical technology. You are laid out on a sliding cylindrical platform and slowly inserted into a narrow tomb like enclosure. A cacophony of clanking noises begins and continues for approximately twenty minutes. Through this mysterious process a detailed picture of your inner anatomy is generated. In my case the area of interest was the brain. The resulting image, much like an X-ray image, afforded the radiologist a detailed view of the puzzling terrain that had been both my salvation and nemesis. It was possible to see the specific areas of my nervous system that had come under attack by MS "lesions". They showed up as whitish, rather unsightly blemishes on the calm grey expanse of my psyche. The physician interpreting this image is able to see precisely what nervous system functions are likely to be affected by the location of the lesion.

The "lumbar puncture" was a nightmare. My Neurologist may have been a very knowledgeable fellow but he was not particularly deft with his hands.. The "puncture" involved the insertion of a four inch needle into my back. It was intended to collect spinal fluid to ascertain the presence of certain proteins characteristic of MS. This procedure is usually accomplished with one puncture, occasionally two. My guy required five or possibly six sticks, each excruciatingly painful. I wondered, had I offended this man in some unknown way? Was he perhaps to vain to acknowledge his obvious need for corrective eye wear? I had the sense that failing in his initial efforts, he'd begun stabbing indiscriminately at my spine. Sometimes, even when the procedure is accomplished in a single insertion, it can result in a continuing leakage of fluid. This fluid goes to the brain and gives rise to a debilitating headache. The patient must remain motionless until the leakage seals itself. My spine, from all indications, was spewing fluid like the Trivoli Fountain from multiple sources. The leaks can sometimes be remedied by something called a "blood patch" which seemed far too grisly to explore further. Besides, this fellow's performance did not suggest him to be the ideal candidate for an intricate repair procedure. Consequently I was laid up in my bed, unable to move my head for several miserable days. This experience did have an unforeseen benefit. When told that the testing had confirmed MS I received the news rather calmly . Clearly no mere affliction could rival the "lumbar puncture" and it's aftermath for raw, unbridled misery. I read sometime after this experience that lumbar punctures had become somewhat passee in the diagnosis of MS. The MRI and the Visual Evoked Potential Test had all but eclipsed the more intrusive lumbar puncture as a diagnostic test. So, it appears that my Neurologist not only lacked personal charm and physical dexterity, but had allowed his subscriptions to the medical journals to lapse as well. Or, possibly my HMO understood that indiscriminate stabbing would be an effective disincentive to the frivolous consumption of their scarce medical resources.

And so, the diagnostic procedures intended to "rule out" Multiple Sclerosis had confirmed it. In the wink of an eye, I'd been inducted into the subculture of the lame and infirm. There were, my Neurologist told me, three or four hundred thousand sufferers limping about in the US today, and many more, he seemed to imply, too cowardly to undergo his lumbar puncture. To my knowledge I'd never met any of these people. I was sent me packing with a stack of informational publications from the National MS Society. This group, my physician told me, would be an invaluable resource to me. The sheer number of publications, each dealing with a different way in which my body might fail me, did not seem good news. Despite my earlier inclination to simply boycott the entire unpleasant situation, I forced myself to wade in to the material. Lets see, there were pamphlets devoted to fatigue, spasticity, mobility problems, sexuality issues, bowel and bladder difficulties, vision problems, cognitive problems, psychological issues, and the predictable detrimental effects on the patients family. A daunting litany of potential woes indeed. For someone like myself, inclined to fret, this provided more than ample fodder. Having tired of railing at the heavens for my affliction I realized that I needed to learn something about MS and what it was likely to do to me. The Neurologist's parting words were these, "you'd probably rather not have MS, but since you've got it, you might take solace in the fact that it's the best time in history to have it". I didn't fully appreciate this until I read that in 1900 the life expectancy of a person with MS was five years.