I can remember even as a kid tipping my head forward feeling the mild electric zing of what I would later learn was known as “Lhermitt’s sign.” I thought at the time that everybody felt this. I also can remember, as a kid, feeling the kind of leg cramps and spasms that I would later identify as spasticity. Again, it never occurred to me that not everybody had these same sensations.
Fast-forward many years, to about 1989 or so. I began to have little tiny dizzy spells, each one lasting a second or two, about 20 or 30 times every day. I went to see a doctor (just picking a name out of the phone book) about this. We did a CAT scan, and the doctor prescribed an anti-seizure medication, as mystified as I was about what these dizzy spells were all about. My son had just been born, and the doctor simply chalked these dizzy spells to stress. The spells lasted a week or maybe more, and then were gone. The doctor simply shrugged with the sage advice that we didn’t know what caused them, but were glad they were gone. A couple of years later, when I was about to start a job cooking breakfast at a local diner on weekends, my hands developed severe cramping to the point that they were essentially claws. I gave up my written journal and started recording daily thoughts on cassette tape. Again, the hand cramps came and went in a week or two, and again, I was just happy that they were gone.
Moving forward again to 2003, I was happily and fully employed as the webmaster for an e-commerce site. Almost every day I took my lunch break with a two or 2 ½ mile walk around the block, and at some point late in the summer I began to notice as I came up to the last quarter mile or so, I had trouble picking up my left foot, causing me to stumble over cracks in the pavement. About this same time I remember I spent a Saturday taking down a big tree in our front yard. I was well experienced with this kind of work, so it was very startling on this particular day finding myself completely exhausted to the point where I needed to put the chainsaw down and sit every 10 or 15 minutes. I knew at this point that something was definitely wrong.
I went to see my doctor, this time a doctor I had been seeing for several years, to investigate this new situation. Although when I look back now I wonder if he had some idea of what was wrong, he simply told me that perhaps I was just out of shape. Somewhere in here about this time, I mysteriously lost almost the entire vision in my left eye. The ophthalmologist I went to see ran me through a battery of tests, but the best he could come up with was a possible tumor behind my eye. He also mentioned “optic neuritis.” Naturally, as soon as I could I Googled this term, to discover that optic neuritis is one of the most common first symptoms presented in multiple sclerosis. My vision cleared up as suddenly and mysteriously as it had struck. The more I read about multiple sclerosis and its symptoms, the more convinced I was that this was what was going on with me. My doctor sent me to a neurologist to do an MRI and a spinal tap, and I’m sure a bunch more tests. But by the time he sat me down to tell me that I had MS, I had pretty much already self diagnosed.
As I continued to read websites and forums about MS, many people wrote about how devastated they were to be given this diagnosis. That was not my reaction. At that time, the symptoms I was experiencing were hardly life-changing, hardly even a bother. In my conversations with the neurologist, we agreed that those dizzy spells and the issue with my hands cramping, probably even the leg spasms of my childhood, were very early MS symptoms, and that I had probably had this disease almost 30 years, if not since childhood. I started on Rebif, and continued my life as if nothing was any different. I was still walking, driving, and working full time. I’m sure that if I crawled through the pages of my journal from those days I could construct a more accurate timeline, but it seemed that at least for a little while the only presenting symptoms were perhaps a bit of a limp and some minor balance issues. Because I was starting to stagger a little bit walking down the hall at work, I felt compelled to tell my boss about the MS, if only to preempt any rumors of my being drunk at work.
I stayed with my webmaster position for another year or so. During that year, the job began to get more complicated and stressful, and I was starting to miss half days and full days of work. The company bought me a laptop so that I could work from home, and for various reasons I was asked to keep a careful log of the hours that I worked. (I felt at the time that they were looking for justification to fire me.) Eventually, the physical and mental fatigue caught up with me, and it became clear that something had to change. I was able to arrange to transfer to the customer service department, answering phones and taking orders from customers. I’ve never been comfortable talking on the phone, so it came as a huge surprise how much I loved this new job. Somewhere in there I adapted my car with a left foot accelerator pedal since my right foot was unreliable. Then I got into a small car accident when my feet got tangled up in the pedals. I was very fortunate that no one was hurt, no cars were damaged, and the propane tank that I ran into did not explode. It was clear that I needed to stop driving, and I hired the son of a friend to drive me to and from work every day. At this point I was working the bare minimum of 32 hours per week, just enough to maintain my insurance eligibility. And, again, somewhere in there, I “graduated” from a cane to a wheelchair. But finally, after almost 10 years working for this same company, it became clear that it was time to stop working. I was missing too many hours, and struggling to meet the minimum obligations of the job. So in 2009, I “retired.”
Since that time, as with most people with MS, I worked my way through several therapies and treatments, all undertaken in an effort to slow the progression of this disease. My disabilities seem to have come on me quickly. I can no longer walk without support, moving quickly from a cane, to crutches and leg braces, to a manual wheelchair and finally to a power wheelchair.
This is hardly a comprehensive account, and it is an on-going story. I have not touched on the emotional part of this journey – maybe I’ll deal with some of that in another post. That part of the story is, as you can imagine, a more difficult knot to untangle. None of this story is particularly unique – MS follows a different and unpredictable course, and responds in different ways to each treatment and therapy, in every person who lives with it – but in a very general sense, it is almost always a down-hill slide, going faster or slower, stopping and starting. It’s different for everyone.