Haha! I think you and I got caught up in a conversation on FB group the other day! My thoughts - HSCT is a very effective treatment, one I myself have considered, but it has a lot of cons to take into consideration as well, and there are soo many people who could never fundraiser enough money to pay for it, nor do they have the time to wait in their disease progression to get the treatment. I've done Lemtrada - I have no problem sharing the good AND the bad with anyone who asks (which, if you have noticed, many negative posts are removed from HSCT boards and anyone who asks for negative stories is usually berated and chastised for asking). What I don't do is be on a general MS board and if someone is complaining about their DMD not working, jump in and start ranting about how great Lemtrada is, which I've seen many times by some HSCTers, including being done on the Lem board. If someone asks, I'll share my knowledge but don't beat them over the head with it. I can understand the patients feeling that they have had to do their HSCT search alone, have had no support, it's not advertised, whatever, but I feel that many times a line is crossed. I also try to avoid getting into debates with others unless I see blatant misinformation being shared cause it ends up being a no-win situation. Not knocking anything or anyone, just my opinion. And back to that other conversation, many times it was said Lemtrada patients were stupid, idiots, didn't want to help themselves, identified so much with MS we want to keep it and we didn't know the truth about Lemtrada so needed an HSCTer to set us straight (which was wrong anyway!).

Exactly. I personally can't take pretty much ANYTHING for MS due to a blood issue. I have been told chemo could be a death sentence for me personally, but HSCT supporters have told me I'm wrong and like the attention MS gives me ( cause being stared at or ignored is just what I want 😕). I also have a friend that had blood cancer, went through chemo, destroying her immune system, and 3 years after she was told she was cancer free the MS is 1p0 times worse. I just got told on a HSCT page that HSCT is"directed" chemo.
The whole cult like attitude scares the heck out of me.

Yes, they seem to have to get you off of this site and say everythings on the Facebook. I don't really do much of my medical decisions through 3rd party testimonials on fb....

I feel the same @A MyMSTeam Member, I am very interested in finding out more about HSCT and am on FB pages re HSCT, but there are some people who have a strange way of thinking, and prance around like theyre experts when clearly they are just like you and me. HSCT certainly has had success in varying degrees for many people but if you keep searching youll find blogs from people who have had no change at all, and some who have had relapses post HSCT. And before anyone shoots me down, I'm NOT anti-HSCT, and am still considering it for myself, I just dont do anything ever, until I know ALL the positives and negatives and can go into it prepared for whatever the result will be, good or bad - and HSCT is no small thing, all we can do is educate ourselves as best we can and decide from there.

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A MyMSTea...

This scam was started in canada. Our rcmp and the threat of charges drove them out.

This even was written in our local newspaper.

I think it is immoral to be on a MS site doing all this.

Read this;

Http://www.wheelchairkamikaze.com/2015/01/a-ste...