Jenny Can you believe it’s been two years since I had my HSCT?!
In some ways, it seems so recent but, in others, it seems like a dream. When I look in the mirror, I’m no longer shocked by my hair – it really took a lot from me to try and get used to the short hair I had as a result of the chemotherapy I had as part of the HSCT. Now it has grown back, I feel more like me again.
Background
Just to give it a bit of background, for those new to my blog, I had a Haemopoietic Stem Cell Transplant (HSCT) two years ago for my multiple sclerosis. I actually have secondary progressive multiple sclerosis, but I was also having new lesions occurring on my MRI scan that were not easing with disease-modifying drugs. Luckily, my neurologist is involved in the research around the use of HSCT in multiple sclerosis, so he put me forward for the treatment.
My Results
So how am I doing two years later? Well, I thought it would be easier to record a video so that I can pop it up on my youtube channel, which I have somewhat neglected over the past year or so (life gets in the way), so I’ll add that here if you would like to watch it. To put it simply, I would say that I have not had any improvement in my symptoms (although perhaps a little bit in my fatigue levels) but I am happy because the MRIs I’ve had since finishing my treatment have all shown that new damage is no longer occurring. And that’s all I can hope for a really isn’t it? The HSCT did what it was meant to do, which was to stop the MS from attacking my brain. As a result, I don’t regret the treatment at all.
HSCT: Some Thoughts…
I’m not a doctor and I know that it’s probably quite controversial to say, but I do think that HSCT should be offered as a treatment for not just those with highly active Relapsing-Remitting MS and those with active Secondary Progressive MS; I think it should be considered at a much earlier stage of the disease in order to reduce any long-term physical impact that MS may have on the body. I know that it is expensive but if it is then shown to halt progression for the same amount of money it costs for 5 years of disease-modifying drugs, I would’ve thought that’s a good thing?
The Video
Hoping that everyone is well and safe.
Love and light,
Previous posts about my HSCT experience:
No way, 2 years already?? Wow, I can’t believe that. Time is just disappearing at an alarming rate!
It’s interesting to get a fuller picture of the treatment after a bigger timespan. It’s absolutely fantastic news that there’s no new damage happening since HSCT, though I’m sorry that you’ve not really had any noticeable improvements to symptoms. I would have thought something like this could and should be offered to others at an earlier stage of MS, too, just from my outsider perspective and a common sense view of preventing additional damage and progression. I’d also anticipate the cost would weigh up quite nicely when looking at the drug vs worsening MS progression over the years. I wonder whether it’s something they’ll look to roll out in the future once they get more feedback and statistics from patients? I hope so.
You’ve been through so much with your treatment, Jen. I think you’ve done incredibly well and I’m really pleased for you that the results are positive with no new damage! ♥ ♥