Stem Cell Replacement Recipients?

[JerryD]

I know there have been , at the least, a thousand MSer's successfully treated with SCT, in one form or another, in various clinics in this world. Dr. Burt at Northwestern has performed HSCT on nearly a thousand people since he began these types of treatments. Where are they? Why aren't they posting on this board ?
I know about the FB group but FB doesn't seem to reach out to the posters This message board has a very high profile, as far as MS information is concerned. I am surprised to see the lack of posts from 'former' MSer's who have been treated with SCT. Where are they ?

[CaroleK]

I hear you, JerryD

but I think the reason that not many post on this forum is that there was a lot of criticism when George Goss really opened up the whole conversation here a few years back. He used the word 'cure' and many MSrs on this forum took offense, as you could see by the extremely long thread that ensued.

I don't personally find it offensive..to each his own...but I also don't think it is a cure in the traditional sense of the word. You are still left with any deficits that have already accrued, but progression, for a very good percentage of people, stops. That's good enough for me.

I think Facebook really is a more interactive medium for many people (although not everyone loves it) because you can post immediately (no one has to approve your posts) and more expression is allowed on that forum (in terms of posting links to fundraisers, online petitions, posting pictures and videos, etc.). This is not to criticize this forum at all. MSWorld is a great place to share ideas, experiences and challenges, and to know that you are not alone.

I would personally love to see more SCTers posting here too as MSWorld has a very large membership and more people could be reached here. I promise, Jerry, if Dr. Burt chooses me, I will post an update here after I go through the transplant process

[JerryD]

Thanks for your thoughtful post, CaroleK. Obviously you understand the points I am trying to get. If this HSCT has any kind of success rate above 50%, it should be considered above most of, or all, of the DMT's.
After all. if one is taking a DMT, it is , at best, a way to prolong the period between 'flares'. And there is always the question of 'deficit restoration'. Nothing known of today will restore accrued deficits. IMHO