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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Thank you...
Koala - I can understand why jigsaw would seem to have a Z in it...b/c a jigsaw "teeth prints" look kinda like a z. Makes sense to me!
Snoopy - I hear your concerns and they make perfect sense.
Like I said, I'm still in the investigational stages of looking into this program at JH. It sounds very promising. It also sounds hecka scary, to put it mildly. There are risks. All of the txs out there for MS have risks, some greater than others. Sometimes it comes down to if the benefits outweigh the risks. For me, the jury is still out on HiCy/Revimmune. Just like my decision to go on Tysabri - the benefits DO outweigh the risks, for me, in my opinion, regarding my health. Just like all the other txs, it isn't for everyone. To be honest, the interferons scare me way more than Tysabri does. My choice, my body.  It's nice we live in a world where we can sometimes make some choices, especially since we have little choice in regards to this cruddy disease (in my opinion).
I will continue to research this - meanwhile, I am scheduled for my second Ty infusion on May 9 (barring them cancelling on my again!).
Snoopy, I don't know if we necessarily need to know the official cause - because IF wiping out the immune system wipes out the "memory" of our white cells attacking ourselves....or if the white cells are reprogrammed and whatever caused them to turn on us, so to speak, would not be triggered, then it wouldn't matter in terms of this treatment. Of course, since we don't know what triggers MS - it could happen again. Or not. We don't know yet. Sure, it's good to know, but what if we never know and this is as good as it gets - a starting over period. Again, I said IF - it is a BIG IF....there is some data on this tx....there could be a lot more. Someone has to be the guinea pig, right? Not saying it's me... but I don't know if I'd ever be able to forgive myself IF this turns out to be "IT" and I don't take the chance. But again, no decisions yet. It isn't hurting me to research it and see what it would entail and IF I'd even qualify for this.
Cheryl - thanks for the links! I'm going to check them out, along with the ones Victor sent.... though, with Victor's, I need to keep in mind that those articles are "old".
Sally - thank you - and YES, I will be most careful.
Again, risks vs benefits, is what it comes down to for me.
Tysabri boasts a 67% chance of less relapses and a slowing of disease progression, whereas the CRABS say 33% (my #s are probably off - but I think close enough for an example). But what if HiCy might have a 90% chance of fewer relapses and/or a complete stopping of disease progression and/or repairing of damage done. Is it worth the risk of death - I don't know. I don't know what they are officially claiming - and I need to find that out and talk to more people; I'm still in the research phase....just as I researched Tysabri - and to me, the benefits outweighed the risks with that.
~keri
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