I first heard about aHSCT (Autologous Hematopoietic Stem Cell Transplant) many years ago. I began seriously looking into this fascinating approach by educating myself in the science and clinical trials behind it. It seemed like a miracle for some, stabilization for many, yet a failure for others.
The concept of this treatment made the most logical sense to me of all available drugs. It is the strongest treatment for MS. I was suffering immensely from my MS poltergeist, so any chance at obliterating this beast was very appealing. The most prominent question I had was ‘why wasn’t this an option for my aggressive, advanced MS?’ The second question I had was ‘why wasn’t this offered to me in 2014 before I went in for Alemtuzumab?’ Since HSCT is an approved therapy in Canada for certain blood cancers, why wasn’t it also authorized for people with MS (pwMS)? The lack of answers to these questions left me stunned, and highly confused.
In 2016 I asked my MS neurologist ‘could we try this for me?’ I had already done my ‘duty’ of fulfilling the two-year requirement of Alemtuzumab, (which had been arduous and unsuccessful). The sad answer was that he said, “it wouldn’t work for me”. I asked again the following year, and got the same answer. Worse yet, I was told on multiple occasions that my prognosis was grisly, leaving me feeling so hopeless I didn’t know where to turn.
Sometimes just trying something is a way of focusing the mind to hope something might go right one day. I had more than enough faith that something should go right, so why wasn’t it?
In the years following, I went on to try more disease modifying drugs (aka MS drugs) along with alternative therapies. I tried anything I could find that would help. Admittedly some things helped, but they were only minor improvements. The disease was still omnipresent.
People who have known me for a long time can’t comprehend how I keep moving through adversity, but I do. Just. Keep. Moving. Forward. My current life was (and is) not worth it, and I had to find a way to get better.
In spring of 2021, another big relapse hit and I was too exhausted – on all levels – to try much of anything. My daily survival was more than a full time job. It felt like my poltergeist was basically trying to kill me. I was in way too much pain, very poor body functionality, and horrendous day-to-day living to the point it was simply undignified.
When did I lose the idea of what a good quality of life was supposed to be like? The feeling of daily joy, fitness, being in the outdoors, artist work, successful business, and belly-aching laughter were all things that had been vacant from my life for so long that I forgot how it felt. There’s usually only one wish a sick person has, and that’s to have their life back. And I want to be how I was prior to this unwanted monster taking claim of my body.
After four months into that relapse I had some close friends push me hard to reconsider what my neurologist had said wouldn’t work for me (HSCT). I had nothing to lose as I was going downhill anyways. Who knows?! Maybe it would work!
After several weeks of research, it came down to one simple truth…without treatment I most definitely was going to continue this downward trend. In contrast, by trying HSCT I may halt that projection, or even have some improvement! Worst case scenario, my health declines post HSCT, but then I’d be no worse off than if I’d tried nothing.
Decision was made: HSCT.