Russian Roulette
- May 13, 2016
- 2 min read
One of the worst things about waiting for my dates is I have plenty of time to think and read about other people's experiences. It would seem that not everyone achieves the "miracle" that Lemtrada has the potential to deliver. And now the fear has set in that maybe I won't be one of the lucky ones or do I have "the goods", the emotional strength, to get through what is about to happen. My fears are surrounded about exacerbating my MS which may or may not improve, I may or may not end up in a wheelchair if not permanently, perhaps temporarily. I have reached out to so many people that have had this treatment, and some say, it's worked wonders, others are just happy to stop progression even if things get worse for a while, and some say they wish they could go back to being "pre-Lem" as life more difficult for them. Can you see the conundrum I'm in?
What I uncovered was that people that are only recently diagnosed (in the last couple of years) and who have this treatment have the best results and those (like me) that have had it for about 15-20+ years (and may very well be on the cusp of developing Secondary Progressive MS (SPMS)) seem to have more frightening results of exacerbating their MS symptoms. The best way to explain it is like this.
If you have had MS for only a few years (and therefore have RRMS), your neurons and axons in your nervous system are able to regenerate as they have very little permanent damage. Lemtrada facilitates the regeneration of these axons. If you have SPMS or may be on the cusp between RRMS and SPMS then your neurons are slowly dying as they have had a lot of damage, and can't be regenerated with Lemtrada (or anything else for that matter)
If you have 8 minutes and want to learn a lttle more about neurons and axons watch this:
So... If your immune system is diminished and your body is fighting this process (People with MS actually have very strong immune systems - the strength and stubbornness of your immune system will dictate how many infusions you'll need), then those dying axons will become more pronounced - therefore leading to a worsening of MS.
My neurologist has decided to send me for a second opinion before commencing and I'm not sure what to expect.. will there be a confirmation I am heading into SPMS territory? Do I still retain my diagnosis of RRMS? Do I still have the opportunity to play russian roulette? - lucky I love a good spin of the wheel.
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