On November 12th, 2019, I had my stem cells reintroduced to my body. They consider this my new birthday because I was given a new immune system (some people even consider, I was killed off, and my twin was brought into existence).
So, to begin with, chemotherapy is inflammatory. Which is not usually a problem, unless you have an underlying inflammatory disease (MS). The first couple years after the treatment, is called “the roller coaster” because there are many inexplicable ups and downs. Often, your MS symptoms get worse during this time. But the recovery process is often illustrated with the following highly unscientific graph
So I’ve been holding off writing anymore on my blog because I don’t really know what feelings I’m feeling are permanent or portend to anything. It’s a lot of unknowns, and I haven’t really wanted to speak about anything and jinx it.
Very early on when I first got home, I was very weak. But because I was very weak, all my muscles stiffness, muscle Tone (where a muscle flexes and won’t release. This most often happens with my quads, and my leg will stick straight out of my knee.), and spasms which is a big part of my disability, seemed to have gone. I thought, with the stiffness gone, and only time ahead, I would get stronger and everything would be better. But this was a head fake. As I got stronger, the stiffness returned, so I really didn’t know what to think about any improvements that I thought I was feeling.
As an example, a couple of months into the recovery, the amount of time I could stand started to actually go down. Only at about the +9-month mark did it, slowly, start to go up. Even, at times, my knees will stay straight, and it’s only my balance that is limiting me. Other times my knees can’t hold me up, and my ability to stand is greatly diminished.
But still, I have some small notable improvements since the treatment. My fatigue seems to be gone, and my heat intolerance seems to be greatly reduced (I think. I haven’t been walking full time [I’m using a wheelchair], and certainly wasn’t during the summer. I’ve also kept my hair short, which certainly seems to decrease the amount of heat that I feel). My concentration is about the same, but there is also a phenomenon known as chemo-brain, that can be expected to dissipate.
I haven’t seen much physical improvements, in terms of strength or coordination, but…
I’ve joined a PT site called the MS Gym. www.themsgym.com. I’ve known about the MS Gym for a long time and heard many good things. I always meant to join, but also managed to put off joining. I then read a post about somebody who had gone from an EDSS score of 6.5 (That’s using two forearm crutches) to a score of 3.5 (That’s mainly based on walking distance. Anything lower than a 5.0 is not using any walking aid, whatsoever). A kind of off-hand part of that post was a caveat, that this person was pretty religious about the MS Gym, so results may vary. That was enough to push me over the edge and join.
I’m about 6 months into my membership. At first, the results were pretty dramatic. My balance seemed to improve greatly at first. My strength is definitely improving, albeit at a decreased rate than when I first started. But that’s always the case with a new workout routine, right?
I have a new positive outlook that I will continue to improve. I am hopeful with more time, more training, and maybe even some more improvements from the treatment, I will continue to get better. Whether those improvements are solely from the treatment and the continued decrease in inflammation, or from strength training at the Gym, I probably won’t know. Nor do I really care. This new positive outlook is a whole lot better than most MS patients just hoping not to have their MS degrade.
I’ve seen some people say recovery really takes 2 years. I’ve even seen some people say they’re still feeling improvements after 3 years. I’m just hoping it continues to get better because right now I worry that I’ve gotten everything that I’m going to get.
I wall-walked for two steps the other day. That means none of my weight was being supported on my arms with crutches or anything like that. Just my balance was being assisted with my hand on the wall. My legs completely bore my weight. Was this luck? This week I’m back to barely being able to stand up out of my chair without holding onto something. Will I continue to improve my ability to keep my knees straight? I don’t know.
I have witnessed posts from 18-year-olds, and people with low EDSS scores, talking about how they feel cured three to four months post. I think with my disability load and how much damage already exists, and coupled with my age (ah, to be 18 again), I’m probably not going to see much inexplicable, magical reversal of symptoms from the treatment alone, certainly not to make me use the word “cure”.
It just goes to reinforce, this treatment is more effective and more successful, the earlier in the disease progression it is administered. It is starting to catch on as a serious option In countries that have national health coverage. Because they know curing the individual saves on a lifetime of disease-modifying “treatment” costs. I wish I’d known about it years ago, but I’m happy that I had it at all.
I hope only more people learn about it, and it becomes something to be taken seriously. Raise a glass, to The Revolution!