Preparing for Secondary-Progressive MS

SPMSFinding out 80% of RRMS patients progress into SPMS was shocking to me. I always knew there was a chance of such progression; I just didn’t know it was so likely. Man! I’m going to have to take a few minutes to think about this. Odd my doctors never told me the facts of progression. I feel a little cheated. 20 years into MS means I am right in the window, and now I am finding out? I might have prepared differently had I known.

So if 80% of us lucky RRMSers are going to become SPMSers maybe we should check-out what SPMS looks like. As with RRMS, SPMS symptoms can be all over the board however, there are indicators to watch out for: 1) “increase in weakness and incoordination”; 2) “stiff, tight leg muscles”; 3) “bowel and bladder problems”; and, 4) “greater fatigue, depression, and problems with thinking than before” (WebMD). Changing a diagnosis happens with a comparison of symptoms now vs then.

Unfortunately the treatments to slow progression of SPMS are limited and those existing have undesirable side effects such as Novantrone (mitoxantrone) with its heart problems and leukemia or methotrexate with its “nausea, vomiting, stomach pain, drowsiness” (WebMD) and hair loss not to mention the potential increase risk of infections and anemia. Medications are available to manage symptoms.

Now that we are all depressed… Knowledge is power. The realization of what may come, is likely to come, my way I can plan accordingly. Prioritizing what I want to do with my life, the tasks I will complete, and the financial goals I must achieve with my potential future in mind is essential. Most of all, I will remember that happiness is a choice and though I am armed with this unfortunate knowledge of potential progression, I am also not defenseless because I know getting good sleep, keeping stress to a minimum and avoiding sickness helps me stay in remission. By taking care of myself I am more likely to have quality of life for a longer period of time. In general MS does not affect life expectancy.

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About the Author

Melissa Cook
Melissa Cook is the author of As a retired high school teacher and school district administrator, she chooses to share her MS story in hopes of benefiting others.