Would you enter a research study if you had a chance wondered what people would do if given the chance.
Sue
i’ve read of someone on this forum who is about to get it done as part of a research project.
bart’s research is the place to start - just google it.
good luck
carole x
1 Like
Honest opinion?
No. Not with the current immaturity of the technique and current state of my disease (much better than average, without taking such risks).
I do think it’s a very promising and exciting research area, and if I was contemplating it, I’d certainly rather do it as part of a properly backed and supervised UK trial (and especially at no cost to me) than pay thousands to have it done in a foreign commercial clinic.
However, at the moment, I’m not ready to entertain it, even if carried out by recognised experts, free on the NHS!
I’ve been very lucky so far in how MS has affected me - or rather how it hasn’t. I don’t mean I’m unaffected of course - no-one is - but I’ve been stable enough for long enough that I’d hate to risk all that by trying anything that could go horribly wrong.
Desperate times call for desperate measures, so if my disease were a lot more active and disabling than it has been, it might tip the balance the other way. But, if you mean exactly as things stand today, then no, I wouldn’t go for it, and I’d be quite surprised if my neuro encouraged it.
I think each case has to be looked at on its merits, and if you have very aggressive disease, it justifies more treatment risk than if you don’t.
I have an acquaintance whose MS has taken an extreme course. Being realistic, without pretty drastic intervention, she probably won’t survive (I hate to say this, and it’s only true in a tiny minority of cases). So in her case, there’s nothing to lose - anything’s worth a try - especially if it’s free, so she couldn’t even lose out financially. But she and I are (so far) at polar opposites of the MS spectrum. What she’s willing to consider will be way up the risk scale from anything I’d consider. It’s not that we have fundamentally different attitudes (probably). It’s just that her risk v. benefit analysis would come out very different to mine.
Tina
x
Hiya Sue, if I was given the opportunity then I definately would. I’ve had ms 19yrs now & I would be happy to try anything as part of research. I’ve given blood samples in the past that was to be used for research but that’s my only experience of it. Are you talking about a project that’s going to be happening?