Tuesday, February 5, 2008

Secondary Progressive Multiple Sclerosis

Yesterday, I had my yearly visit with a specialist at the Johns Hopkins Multiple Sclerosis Center. At my last visit with a neurologist at this center, it was suggested that I was beginning to transition from Relapsing Remitting Multiple Sclerosis (RRMS) to Secondary Progressive Multiple Sclerosis (SPMS). With the full understanding that definite, clear-cut answers are rare in MS, I went back to see if this was still the likely case.

This doctor confirmed that I am probably now Secondary Progressive MS. Of course, he can’t say with absolute certainty because I could theoretically have an relapse or exacerbation tomorrow or next week, but he feels that I am most likely in the SPMS group. This was based upon this evidence: I have not had a relapse/ exacerbation/ attack since 1999, my MRIs have shown no change for the last four years, but I am now on disability due to worsening fatigue and decreasing strength in my right leg.

It is not unusual for Relapsing Remitting MS patients to transition to Secondary Progressive after about ten years, especially if they have not been on any disease modifying drugs. I had MS for approximately 7 years before any doctor suspected that I had it, and went 13 years before I started disease modifying drugs (due to the long road to positive diagnosis). It is now 21 years later, and the neurologist said I was in pretty good shape considering how long I’ve had this monster. But I do have a lot of obvious lesions in my brain and spinal cord, and I even have some 'black holes' in my brain where the neurons are simply dead.

BUT on the other hand, it could be the Copaxone that is holding my exacerbations in check. We won’t know for sure until I stop taking Copaxone shots and then see what happens.

So why am I so curious to know which acronym applies to me? MS is MS, you might think. But note that the injectable medications used for Relapsing Remitting MS are not effective with Secondary Progressive MS. So I have been asking this question for almost two years to determine if I'm on the correct drug therapy. Now I have to decide whether or not to stop the Copaxone shots. I have some time to consider this, weighing the pros and cons, understanding that nothing is certain.

But that’s okay, I’m used to the uncertainty of this disease.



  1. Joan, which seems more frightening to you...
    1) big, bad relapses which rise up and then eventually fade somewhat, or
    2) a slow, gradual incline toward whatever greater disability there may be to come.

    For someone who has lived with MS for so many years, I'd like to hear your opinions. [and could I maybe, possibly, if it's okay with you, make it onto your blogroll?]

    Lisa of Brass and Ivory

  2. I had my first MS symptom soon after age 10(head trauma) then dx age 33 (MRIs came along), on Copaxone 1999 and stopped daily about two years ago, stop for month at a time. No exacerbations, no new problems, for years now, I am not a CRAB fan, never was. I prefer no more big exacerbations and knowing what I have to work with. The copaxone did not keep me from ending up exactly where I normally would have at this stage.
    That is MY story. My life is good.

  3. Guess it doesn't matter WHICH letters we use to describe the disease...they ALL suck.

    Linda D. in Seattle

  4. Lisa,
    You are already on my blog roll under MS Bloggers - Brass and Ivory Carnival of MS Bloggers. Would you prefer a different title?

    I have to think about how to answer your question about what I prefer - the intensity and unpredictability of months in bed followed by periods of clarity and no problems, vs. the slow decline and constant fatigue. I will get back to you on that subject.