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    #16
    Everyone believes different stuff. The only belief that makes a difference for you, is yours. If you believe that HSCT is the right thing for you, and your particular case, then go for it. I wish you the best. By the way, how did you get in touch with George ? I sent him an email and got no reply.

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      #17
      I used to belong to his FB group, but I left. He is like the pied piper of HSCT, but not for me. Sadly it's a lot of desperate people who are looking for a cure. HSTC does not work for everyone and it's dangerous and expensive. George acts like you're going to die if you don't have it. Sends people into a bigger frenzy. I just couldn't sit and read the posts anymore.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #18
        Katje,
        I respect your decision, whatever you choose to do. I have been in touch with George in the past. And, yes, he is one of the biggest HSCT proponents on-line or wherever.
        His story is his alone, but that doesn't mean that there aren't others with the same story. I didn't read much from the FB page, so I can't speak on others' experiences with HSCT. As I said earlier, I respect your decision. Good luck

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          #19
          Keep in mind, Dr.Burt's is a trial. He wants everyone to be on meds first before doing the stem cell transplant.
          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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            #20
            Katje,
            I was at a speaker event with a neurologist who said that one of his patients underwent the HSCT procedure at Northwestern Univ. He said that the patient did not improve much after the treatment. He said that the patient was in very bad shape going into the study. The patient was SPMS and wheelchair bound. Also, the patient had much problems with mouth, speech and swallowing. I don't know a lot about the patient, but the doctor was not all that effusive about the stem cell therapy.

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              #21
              Originally posted by JerryD View Post
              Katje,
              I was at a speaker event with a neurologist who said that one of his patients underwent the HSCT procedure at Northwestern Univ. He said that the patient did not improve much after the treatment. He said that the patient was in very bad shape going into the study. The patient was SPMS and wheelchair bound. Also, the patient had much problems with mouth, speech and swallowing. I don't know a lot about the patient, but the doctor was not all that effusive about the stem cell therapy.
              Not surprised. Dr. Burt will only do it on RRMS patients. he feels it needs to be done in the inflammatory stage. My question is, what if MS is genetic? HSCT won't help that. What if even if it helps the inflammatory stage, might the MS still progress to the next stage anyway?

              Dr. Burt can't answer that, but feels it is beneficial in the early stages but not claiming a cure.
              I mentioned this in the HSCT group in FB and I was told I was being negative and scaring people from getting the procedure so they banned me.

              I quoted Dr. Burt. lol

              I am still on the fence to have this or not though. I'm a chicken.
              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                #22
                No you're not a chicken. You are using calm reasoning because the choice you make will have a huge impact on your life. When I heard the neurologist, last night, I began to think more carefully about HSCT. Good luck

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                  #23
                  Hello All

                  Yes, JerryD - Its doctor Slavin at CTCI. My husband is VERY uncomfortable with the whole thing - thinks they were way to quick to accept me before even really looking at medical records...seem more interested in providing me bank routing information so I could send them the $94,000. Taking a lot of convicing that he is a highly respected doctor with very good credentials. I have not wired money or set a date yet!

                  As for the "is it a cure" debate...jeez - wish I knew for sure...lol... I don't think the doctors that do the treatment call it a "cure" - more like a hopefully long term (permanent) remission - I mean whatever "caused" the disease is still there somewhere in you - and since nobody knows what the "cause" is - nobody can claim to have cured it...in my humble and non-scientific opinion. But it is really no different for cancer, right? I mean people that reach 5 year remission are called "cured" - but they will still be monitored very carefully for the rest of their lives since their risk of cancer is still much higher than for someone who never had cancer.

                  Even for people that do the prodecure anywhere between 20 and 25% of people still re-lapse pretty quickly- I guess these folks are followed up with a bit more chemo that then seems to kick things into remission "forever"

                  Clearly, early on they were treating the wrong people - not in the inflammitory phase, too disabled, PPMS - so back then they were only seeing a 50% "cure" rate - it has gone much higher as they learn who to treat - but hey - that is what clinical trials are all about, right, learning!

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                    #24
                    Yeah, the researchers change the patient's profile and the drug regimen to affect better success outcomes. In the real world, MSer's are all in varying degrees of disability and physical distress. If you aren't comfortable with the CTCI program, there is very little you can expect anywhere else. Dr. Slavin has been in this stem cell business a long time.
                    It seems that the researchers want to increase their 'odds' by treating as homogenous a group as they can accumulate in the clinical trials. It's seems like 'stacking the deck' to me.m m
                    I don't mean this as a criticism, because if those trials get our community closer to a 'cure', I accept the compromise.
                    I wish you the best on this journey. Please keep up the dialog. It is my firm belief that the more we 'advocate' for ourselves, the better chance we will be heard. Good luck

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