In my quest to find out more about HSCT and decide whether it is the right option for me, I have spent a lot of time reading accounts of other people’s experiences.
Thankfully there are many people who have shared their experiences of treatment and their recovery through blogs, videos, Facebook pages and discussions in online support groups.
There are a couple of recurring themes I have come across. In terms of halting MS and improving symptoms, there seems to be a wide range of outcomes – from huge life changing improvements to very little change at all. The vast majority see the progression of their disease stopped and it is important to remember that this is the aim of the treatment. HSCT doesn’t “cure” MS but there’s a good chance it can put it in remission. At the moment, this would be a dream come true for me!
For a few people, the disease isn’t stopped by HSCT and their MS progression continues. Despite this, I have come across very few people who regret having HSCT and a very rare one or two who are thinking of having HSCT for a second time!
I think, because it feels as if MS has taken control of your life, it can feel empowering to be doing something to fight back and not give in to that control. The most common regret I see expressed by those who have had HSCT is that they didn’t have it sooner, before accumulating as much damage.
Last week, The Times published an updated personal account written by BBC correspondent, Caroline Wyatt, of her progress and recovery from HSCT.
If only we could all look this cool with a walking stick!
Caroline has had a mixed recovery and says this about where she is now…
“Nearly two years after my stem cell transplant, I’m back to where I started. Yet curiously, I am also more at peace with myself, with my life and with multiple sclerosis.”
You can read her full account here (you will need to provide your name and email address in order to read the full article – it’s quick and easy and there is no commitment).
It is an inspirational, highly personal, honest account and many of us in the world of MS/HSCT are grateful to her for talking openly about her experiences …
Caroline Wyatt: multiple sclerosis and my stem cell transplant, The Times, November 17 2018
Many MSers recovering from HSCT feel that their recovery isn’t complete until 3 or 4 years after treatment, so there is hope that Caroline could see further improvements.
Caroline wrote an earlier account of her treatment at Clinic Ruiz in Mexico, which can be read here …
Caroline Wyatt: How I’m feeling after my MS ‘body reboot’, BBC, March 22nd 2018
You can follow Caroline on Twitter @CarolineWyatt