What I Did When I Thought I Might Be Sliding into Secondary-Progressive MS

Until a year ago, my body was like a nation divided. My entire left side was the most stricken, while the right side’s main job has been to compensate for the weakness of the other. My brain adjusted itself long ago with the help of a cane held in my right hand. While it didn’t form a more perfect union, it has promoted the general welfare. But 12 months ago, the right leg began shirking its duties and the left constituency has been sending hate mail to the Central Office (CO) ever since. The CO formed an ad hoc committee and launched an investigation into the cause of the insurgency. My neurologist was appointed Lead Investigator (LI). Here’s what we’ve learned so far.

Over the past 12 months, I’ve had three appointments with the LI during which she performed neurological exams. On all three occasions, upper and lower limbs on the right side were consistently weaker compared to past exams. Foot drop has also developed on the right side, which I’ve reported as a waxing and waning pattern. Although I can often connect the worsening to lack of sleep and increased physical activity, the weakness also comes and goes for no apparent reason at all.

Since my last flare

During my latest appointment in May, I noted a landmark fact: it’s been six years since my last flare. Ever since the rebel faction made its first appearance, I’ve averaged one flare every 4.5 to 5 years. This change could mean:

  • Tecfidera is doing its job, or
  • The disease might be settling down as I enter my senior years, or
  • Some other reason.

Put that together with the worsening limb weakness and foot drop in the absence of a flare, and it could mean:

  • The waxing and waning pattern is being caused by non-demyelinating factors such as temperature changes and bladder infections, or
  • Stenosis caused by my previously diagnosed degenerative spine disease and arthritis has worsened lately, or
  • I’m sliding into secondary-progressive MS (SPMS).

What a new diagnosis could mean

I made it clear to the LI that I am not anxious to get a SPMS diagnosis. That would mean an end to taking Tecfidera and any other RRMS disease-modifying therapy since there hasn't been a new approved therapy for secondary-progressive MS since Novantrone, and that one is rarely used these days because of serious health risks. The LI agreed. I also expressed my awareness that we can still experience inflammation during the transition and ought to continue taking RRMS therapies to treat it. A delay in changing the diagnosis can keep me on Tecfidera. She agreed.

We discussed getting a new set of MRIs. The last set was taken in 2011, after which I decided no more would be taken unless I experienced symptom changes. I agreed to brain MRIs with and without contrast, and a cervical MRI. Those are scheduled for June 14, 2017. If we see no changes, then I’ll get a lumbar MRI where stenosis and arthritis are the worst.

As a side note, we also discussed a hike in pain during in the last year, including lower back pain and a new kind in the left hip and buttock that we’ve identified as sciatica. Since I was quite sedentary during the winter months, I’ve attributed the new discomfort to not moving my body enough. Although I reported finding a stretch specifically designed for sciatica and feeling relief from doing it, I still fail to perform such exercises on a regular basis. The LI gave me a pamphlet of McKenzie extension exercises to try. The McKenzie exercise philosophy is “to first decrease then abolish leg symptoms. As the symptoms decrease your back pain should also decrease.”

My lack of activity hypothesis proved out during May when, after several days of gardening activity that just about killed me, I woke one morning feeling stronger and more pain-free. I want to feel that way all the time.

Whatever the test results show, activity and exercise will remain an important part of the treatment plan. While I do not want a divided nation to escalate into an all-out civil war, either way I must attend training boot camp and keep my body in fight-ready condition. If the insurgency can’t be contained, then I must become a warrior and defend my territory. Quality of life is not guaranteed by the constitution, only the freedom to pursue it. We must fight for it time and again.

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