As I mentioned in my last post, MS comes in four flavors. Since 85% of those afflicted have the relapsing-remitting type (RRMS), most people start with an assumption that this is the version that they have. Some of us hit a point where we have to start to question if we actually have Primary Progressive MS (PPMS) instead. I am at that point now.
Let’s start by looking at some of differences between RRMS and PPMS.
RRMS has periodic flare-ups that largely or completely go away, only to come back again later. PPMS has just a steady deterioration. Looking back on the progress of my disease, it has been a slow steady deterioration. I may have some days that are slightly better or worse than others, but I have never all of the sudden had an exacerbation. Nor have I woken up and found that my leg was back to normal. My strength and coordination in my left leg has just very slowly gradually gotten worse. I used to think that my MS medications were just preventing any flare ups of new symptoms. More and more I am suspecting that this is not the case; it may just be PPMS.
Demographics. RRMS occurs in two to three times as many women as men. It usually first pops up it’s ugly head in someone’s late teens to 20’s. PPMS on the other hand, usually begins in someone’s 40’s and afflicts men and women equally. I am a male and my MS began in my late 40’s.
RRMS activity tends to show up in the brain more and the lesions have more inflammation. PPMS tends to show up more in the spinal cord and have less inflammation. I remember my doctor looking at my MRI done with contrast last year and saying that it looked good with little evidence of new inflammation. We attributed it to the Rebif that I was on working. It could be. Or it could just be that it’s PPMS and taking the Rebif was coincidental since it’s generally accepted that the interferons like Rebif don’t do much if anything for PPMS.
MS can manifest itself in many ways. RRMS runs the gamut from eyesight, strength, balance, cognitive, bladder control, sexual issues etc etc. Any of these can also occur with PPMS, but the most common symptom is trouble walking and mobility. To date, walking/mobility is the only symptom that I have experienced.
What difference does it make and what does it all mean from a practical perspective? The only advantage that I can think of for PPMS is that it is more predictable. You know what you have and that it will gradually get worse. There is less of a concern that you will all of the sudden wake up one day unable to see out of your left eye for a week. The biggest disadvantage of PPMS is that it doesn’t respond as well to medications. In fact, all of the disease modifying drugs approved for use in the U.S. currently are just for RRMS. With some luck, that may be changing.
In my next post, I will dive deeper into my treatment options if we suspect that I may have PPMS.