April 8, 2001
Secondary/Progressive (SP) Initial relapsing/remitting disease followed by progression with/without occasional relapses; minor remissions (some recovery), and plateaus.
My first symptom of multiple sclerosis occurred in 1983, a case of double vision that resolved about five weeks later. Several tests followed, including evoked potentials, glucose tolerance, CAT scan and spinal tap. MRI was not available at that time. Oh, and blood; they wanted lots and lots of blood. The glucose tolerance test was given because diabetes is strong in my family and, apparently, double vision is a common first symptom with that disease, as well. When all was said and done, I was told that the cause of the double vision could not be determined.
The next several years found me living in what I considered a neurological Disneyland. I worked at a job that required much standing and I noticed that my legs were "wobbly" at the end of a shift; later, this ended my employment at that occupation. Still not diagnosed by 1988 and with a co-vivant who understandably regarded me as simply too lazy to work, I was forced to find work elsewhere where I could sit most of the time.
Neurological symptoms increased during this time. The muscles of my right arm would cause the arm to wander off on its own for two to five minutes, during which time the arm and hand would be useless and it would be about an hour before I regained enough fine motor control to type. This disturbance lasted about two years and would occur about twice per week before it resolved. These episodes were the first I experienced that caused pain.
My right leg was affected by spells of weakness, such spells also lasting about two minutes and also resolved after a couple of years. These spells did not cause me to fall, but did require that I lean against a wall (or whatever was nearby) until they passed.
I received a "possible MS" diagnosis in 1989. There had been other "possible <whatever>" diagnoses prior to this and I decided not to tell anyone of it. This decision, in retrospect, was a mistake. Folks could see by now that my gait was abnormal, but they had no way of knowing the possible cause. Some, I learned much later, thought I was taking illegal drugs.
Around 1992, my knees became painful if I walked more than a very short distance or stood in one place for more than a minute. This was not initially associated with MS and was diagnosed as "femoral patella syndrome", a problem normally experienced by athletes I knew this was not it! <grin>
In 1994 I stumbled and nearly fell while crossing a busy street. This caused my doctor to refer me to a neurologist who specialized in MS. An MRI showed the MS lesions and, based on my symptom history, I was officially diagnosed as having the relapsing/remitting form of multiple sclerosis and the "femoral patella syndrome" diagnosis was regarded with increasing suspicion before it resolved in 1995.
By 1996 I was having difficulty walking unassisted and I started using forearm crutches in the fall of that year. I had been having back pain for some time before I started using the crutches. This back pain disappeared within a few weeks of starting the forearm crutches, leading me to believe the pain was associated with the "MS list to starboard". The forearm crutches eliminated this as well as improving my posture when standing. It was also this year that I became aware I had changed from relapsing/remitting to secondary progressive MS.
In 1997 my legs would occasionally go into spasms and baclofen was prescribed. This remains the only drug I take for the MS. For one reason or another, I never qualified for Avonex, Betaseron, Copaxone or Rebif. I wish I had qualified to take one of these drugs.
I took flurazepam (dalmane) for many years prior to the double vision and continue to take it to this day to help me sleep, especially when the restless leg syndrome sets in as it frequently does. Restless leg syndrome is the muscles of one or both legs suddenly contracting, causing a sudden jerk of the leg.
I was no longer able to work by the end of 1998 and had to go on disability. In 1999 it became obvious that I was headed for a wheelchair, which arrived late fall/early winter of that year.
As of this writing (May, 2001), I do not experience exacerbations, but fatigue and hot weather will make my symptoms worse. These worsened effects return to my baseline as soon as I rest or cool off.
I married a wonderful lady, formerly Joan Kennedy, on March 5 of this year. Yes, we met on the internet. :-) Joan also has ms, although she has been relapsing/remitting for more than 30 years. We purchased a bungalow here in Perth, Ontario, Canada and had several modifications made to the house before we moved in. Our local mobility products store maintains a library on how all aspects of a house should be modified to accommodate disable persons.
The first modification was the addition of a wheelchair ramp so that I could get in and out.
Second modification was to the washroom. The toilet has an extension piece added to raise the seat by several inches and rails added as arm rests. I can use these rails as aids when I transfer to/from the wheelchair. A plastic and metal chair rests in the custom shower stall. This stall has no barrier at the sides as you have in a ususal shower stall. Instead, the floor of the stall slopes down to the drain and a plastic curtain weighted with magnets prevents water escaping. Plenty of grab bars around the chair help make it possible for me to shower unassisted.
The bedroom was enlarged to facilitate movement in the wheelchair. Doorways throughout the house were widened to 36 inches, again to accommodate the wheelchair.
There is much I feel I should add to this article, but a weakening arm and hand prevent long periods of typing. I hope to fill out these areas and then beg Paul's indulgence in replacing this article with the updates. Should anyone have questions I can be contacted on the usenet newsgroup alt.support.mult-sclerosis. My e-mail address changes from time-to-time so it is impractical to put it here.
© Jim Carter, July 2001