@ChiMum 

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ChiMum

HSCT Experiences

I haven’t started treatment yet as I’m recently diagnosed with MS, but my consultant has offered me the option of going on a trial of aHSCT. Has anyone else had stem cell transplantation, and would be willing to share their experience with me? I know that it’s a massive decision to make because it means potentially a couple of months of being really ill and weeks of being in hospital and away from my children plus there is the risk that I could die and chemotherapy sucks. I know it sounds silly, but the thought of potentially losing my hair breaks my heart. I have zero confidence at the moment as it is, I can’t imagine how I would feel without any hair. I know it’ll grow back and it’s not the end of the world but still 🥹 On the other hand, the day opportunity is huge. The treatment is free, the hospital is an hour on the bus away from me, so not far at all and it could mean that I halt my MS symptoms in their tracks before I get any worse. I had two big relapses this year and I haven’t fully recovered from either of them, I am scared that one day I will lose my vision in an eye, not be able to use my hands completely or end up in a wheelchair. I want to be able to be a good mum, I want to be able to drive, walk, keep running my business and leave as independent of a life as possible. I have always done almost everything myself since I left home at 17. My husband works really long hours and my kids are at school all day. I work from home and I’m alone for most of the time. I just want as normal a life as possible. It’s such a massive decision to make. If it works, I could have a really normal life ahead of me, but if it doesn’t work, then I’ve gone through a lot of misery for nothing, I might be worse off healthwise and I was before I could even die. I would really really appreciate anyone’s personal experience of going through the treatment. Please feel free to PM me if that feels easier for you :)
@Snail-train

I do wonder about this .. whether it’s worth it. Seems to be only short term benefit?