Paulfrom the MS community: Do you have any advice for people considering taking HSCT treatment now and hoping to live longer?
Dave Bexfield, MSers Expert and founder of Active MSers: Oh, one thing I would recommend is get your facts right. On my website ActiveMSers.org, I have in the forums areas dedicated just to research on HSCT, and I don’t editorialise much there at all.
It also has my experience from day one, day two, year one, the whole thing. And I cover it in great detail. But I think the most valuable thing over there is I publish the abstracts of every study that’s been done on HSCT, and I continue to publish them. So they go back to probably the year 2000 and you can really get a good sense of what’s out there.
I would say – and yeah, I will get flamed – don’t rely on a lot of these other websites out there. There are some groups and they’re very vocal and they’re very excited about this treatment, and that’s fantastic, but they don’t have their facts exactly right and it causes a big problem with the researchers and they’ve even come to me to complain, and they say hey, they get about 60 or 70% of it right, but then they get 30% of it wrong. So I would say, try and go to an unbiased source for information, look at these research studies and come to your own conclusions, don’t necessarily listen to someone who says, I got it done six months ago and I am cured and I feel great.
Well, I felt great at six months too, and I felt great at one year and two years and four years. You need to look a little bit farther down the line and take all those great experiences with a grain of salt and make your own decisions. That’s what I would say.
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