What I wish I'd known about HSCT
If I could go back 5 years – I would still definitely choose to have HSCT, although knowing what I know now would make me think more carefully.
I chose to opt for HSCT in Mexico after being turned down for a trial in the UK. I was hopeful and ready to get well and believe in the process. For me, though, it wasn’t the cure I had hoped for. But I'm still so very grateful that it seems to have stopped MS in its tracks and slowed any progression.
Some positive results
Almost instantly my foot drop disappeared and I could wear flip flops again and that has stayed with me. The overarching pain in my lower back and not being able to stand upright after 5pm has totally gone.
Walking was one of the main areas I wanted it to improve and it did seem to for a year or so where I enjoyed dog walks again.
But I think that this might have been more to do with the chemo treatments (rituximab) that I had for a year in the UK following the treatment.
The other area I was hoping would improve was my IBS / bladder urgency. That hasn’t seen much change, although I do follow a ketogenic diet along with supplements like vitamin D, which seem to really help.
The not-so-positive results
One thing that I didn’t really think about was the onset of early menopause. I knew that was in the small print but I didn’t think it would happen to me.
Now at 46 years old, I have gone through menopause and often I don’t know what my symptoms are – MS or menopause?
I do get tired after eating, have achy joints, can’t sleep through the night and the dreaded hot flushes!
Maintaining what I've achieved
My walking has worsened over the last few years and I'm experiencing muscle loss although the doctors in Mexico recommended intense physio which does still seem to help. I do notice when I haven’t done my exercises! I also go to the gym and again notice a huge difference in my shape and muscle tone.
I think it is crucial for any treatment to work that you believe that it will. I'm continuing to work on being as healthy and well as possible.
Daily yoga, physio, breathwork and diet seem to really help me manage my MS now along with keeping me positive.
