Secondary Progressive MS – Part 1, My Journey

The positive thing for most people who are diagnosed with Relapsing Remitting MS is that if found out early and started on DMTs you may never progress to Secondary progressive MS (SPMS). With new medications being developed all of the time those newly diagnosed have so many options.

Even since I was diagnosed there have many new drugs approved by the FDA in the states which give hope to those still in RRMS or any other types because previously, there were no options for primary or secondary MS.

My story is a bit different though, I had it for numerous years before actually being diagnosed and once I was there were more than 20 active lesions in my brain, which for those who don’t know ms, it’s a lot. My original neurologist put me on Tysabri, which was considered the stronger and most effective drug at the time. I was on it for two years and had new lesions occur and was not changed to something else. At that point I switched doctors. In 2015 I had the only “remission” since my diagnosis, it was August though the end of September and it was awesome.

At the end of September 2015, I was in a car accident that totaled my car when I was rear-ended and shoved into the truck in front of me. I went back into relapse at that point. In June of 2016 I saw a new neurologist who advised me my MS was aggressive if I had new lesions on MS. That tracked for me. I won’t give you the play by play but I am now on my 4th DMT (disease modifying therapy).

I have not been in remission since, it has been a slow degrade of abilities and functions since 2015. Until last year there was no medication for SPMS and no one would label it because all treatment would have to stop at that point. This year, my medical notes reflect my progression and note that it appears I am having relapses with no new lesions. For someone who lives in a body that doesn’t really work and with a mind that seems to get worse everyday, those notes in my file are a win. I am not crazy, what I am feeling happen to my body is in fact true.

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