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Whyare people so uninterested in having SCT?

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    Whyare people so uninterested in having SCT?

    I see so many MSer's still using the usual dmt's. I simply don't understand why more are not trying to have HSCT?

    I been sitting on the fence on this for a year but finally decided to move forward on this because dmt's simply aren't enough and I don't want to get disabled or have MS for the rest of my life.

    I understand the fear, but MS is scary too.

    Look forward to your replies because I would like to hear why people choose not to have this treatment.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    I am with you, Katje. The Tisch Center in NYC is currently performing its stem cell trial on 20 patients with 'progressive MS'. That is the first of its type in the US. Every other stem cell trial in the US has included RRMS patients, only. I hope this changes, soon. Good luck

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      #3
      Katje, I'm glad you are moving forward with it. I hope to be as lucky as you in getting accepted by Dr. Burt's group. HSCT is a bit scary, but its effectiveness cannot be dismissed. It seems to be the best option out there. Best of luck with your journey and please post back here as you go through the process. I'm sure I'm not the only one interested in how it all goes for you.

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        #4
        S C T

        What can I say. I already flew half way around the world to have the liberation treatment, at a cost of about 14 grand, pretty near four years ago. I'm ppms and I think it helped to a certin extent but it didn't reverse the symptoms. If your not too bad off symtom wise then I'd go for it but right now I need to be repaired, or to get my body kick started to repairing itself.

        I don't even think that this procedure is available in Canada yet or even to ppms'ers . I heard it costs a whole pile of money as well. I'm just gonna wait and see for a while. I know time isn't on my side but I leaped before I looked with the other.

        I lost one of my best freinds to the 'cure' with cancer and that chemo and radiation, it aint pretty. I was definatly a guinney pig with the ccsvi thing so I'm a little afraid to push my luck to far. Savvy??
        It was one agains't 2.5million toughest one we ever fought.

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          #5
          For me, 1 word.... cost.

          Jen
          RRMS 2005, Copaxone since 2007
          "I hope to be the person my dog thinks I am."

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            #6
            I don't because I don't believe in it and it is vastly expensive anyway.

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              #7
              Oops, hit "Submit Reply" by accident.

              Further to my "cost" comment, not only do we have to come up with the $ for the procedure but since it's not "on the list" of Canada approved surgery (like CCSVI) one would have to have enough money to pay for travel, plus the appointments, to have anything done in the US or abroad should anything go wrong.

              Sad reality.

              Jen
              RRMS 2005, Copaxone since 2007
              "I hope to be the person my dog thinks I am."

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                #8
                Hi Katje, I assume that you are referring to stem cell replacement. It has been my understanding that if you cannot get in a trial that it is way to expensive and insurance does not cover it. Am I totally wrong as I would try it asap.
                PEACE
                Tortis

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                  #9
                  I am not at all against getting stem cell treatment. HTSC treatment is only offered in Denmark if you have aggressive ms and meds aren't helping, but there are currently trials going on with stem cells derived from the bone marrow, where the preliminary science has been really promising, and the good thing is that they won't need to use chemo to wipe out the old immune system.

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                    #10
                    Originally posted by Jotunheim View Post
                    I am not at all against getting stem cell treatment. HTSC treatment is only offered in Denmark if you have aggressive ms and meds aren't helping, but there are currently trials going on with stem cells derived from the bone marrow, where the preliminary science has been really promising, and the good thing is that they won't need to use chemo to wipe out the old immune system.
                    I agree about the no chemo, however I don't think they have been successful just using stem cells but I could be wrong.
                    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                      #11
                      Of the emerging breakthroughs for Multiple Sclerosis, I believe that stem cell therapy (SCT) holds the biggest promise. I currently do not believe that SCT (of any flavor) lives up to its potential and it isn't ready for "prime time." It is my estimate that the pros of SCT do not outweigh the substantial cons that people have already pointed out. While SCT may be the future boon of medicine; there are few areas where SCT has been proven in properly conducted clinical trials.

                      Desperate people do desperate things. Medical Tourism continues to prey on people that pin their hopes on experimental therapies and unproven procedures. A number of MS patients have used "medical tourism" in the past and are only poorer for it. There have also been procedure complications, up to and including death, that few people believe will happen to them. It isn't just CCSVI for MS patients, but also Lemtrada and stem cell procedures have been going on for 10+ years. During the height of the CCSVI craze, places were doing dozens of treatments each week in assembly line fashion. A number of US citizens are hoping to obtain Lemtrada abroad. The US FDA questioned the benefit and was concerned about the health risks. The anecdotal evidence of Lemtrada is apparent, but according to the FDA it wasn't backed up with scientific evidence. I am not completely against medical tourism. I know a number of doctors that fly to Mexico and perform the identical procedures there that they do here --- with the same equipment and comparable facilities. Those doctors then provide post-op care here in the States so the continuity of care is never severed.

                      MS has definitely impacted my life, but I still LOVE life and currently not willing to risk it on SCT. I am grateful that people are volunteering to be experimented on and only hope the best for them. For me, I have good hope and my faith and God's grace meets all my needs. I try to not spend my time looking for the next best thing while life is passing me by. I am also aware that I am an old stubborn curmudgeon -- and proudly so! During my time here, I've learned a few phrases that sum up my current feelings of SCT quite well.

                      • Technology phrase, "We want to be on the cutting edge, but not the bleeding edge."
                      • Military phrase, "Don't become a statistic."
                      • Medical phrase, "Do no harm."

                      I wish you all well ...

                      Comment


                        #12
                        You didn't mention how aggressive and how far along your MS is. Do you have a lot of disabilities, or are you just wanting to hold damage where it is now.

                        incidentally, I don't know that much about it, but it seems the procedure gives you a new immune system, which in theory would stop the attack on your nervous system. I'm not clear though if there is any recovery, just more like removing the drunk driver who's hitting parked cars and denting up the car, from the seat and putting a sober driver in. The dents and scratches don't go away, but there are no new ones.

                        If it's the case, you might want to look at Lemtrada before you spend the money and take the risks. Lemtrada has some risks, but it's the closest thing to a med that stops MS activity (Relapsing Remitting, I think)

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                          #13
                          At the age of 50, it would be difficult at best to get me to even think about trying to get into one of the trials. Not enough evidence has been produced yet for me.

                          HSCT is not a walk in the park...I just would not put my body through that. I watched one of my neighbors do it with cancer. He actually ended up dying, but not before going through utter misery, for many months. My body is too old to be the Guinea Pig.

                          So for me, I will stick with my DMD (which could kill me too)and keep hoping the Tysabri keeps working...but, no chemo, no bone marrow transplant for me.

                          Additionally, for me, any treatment has to be available here in the United States.

                          Now with that said, I believe HSCT is the right direction for MS. And bless those that are raising their hands to do the trials. If I was younger and still running marathons, I would raise my hand right along with you.

                          Congratulations on getting accepted into the trial and let us know how it goes!
                          Katie
                          "Yep, I have MS, and it does have Me!"
                          "My MS is a Journey for One."
                          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                          Comment


                            #14
                            I looked into being a participant in one of the trials but I was denied (you needed to be able to walk 25 feet). It is the trial that is being done by the Cleveland clinic.
                            hunterd/HuntOP/Dave
                            volunteer
                            MS World
                            hunterd@msworld.org
                            PPMS DX 2001

                            "ADAPT AND OVERCOME" - MY COUSIN

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                              #15
                              Katie I am 49 and going to do it. I have a 6 and 7 year old, They need me to be able to do things with them. I have to do this. So 50 is not too old. I know of someone who was 56 when she did it. She is fine.

                              People who have cancer die from cancer not the stem cell treatment.
                              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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