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Are We Ready For a Stem Cell Trial in Transverse Myelitis?

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  • Are We Ready For a Stem Cell Trial in Transverse Myelitis?

    most informative video i have seen about my disease i've seen in a long time. 30 min long but worth the watch

    http://youtu.be/tDJBl2_0_Jc

  • #2
    Personally, I would NEVER do stem cells. I've been paralyzed 29yrs from Transverse Myelitis at age 12 (since 1985).
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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    • #3
      Originally posted by lynnifer View Post
      Personally, I would NEVER do stem cells. I've been paralyzed 29yrs from Transverse Myelitis at age 12 (since 1985).
      im surprised. i would. i also have ms. my hands have nearly become unusable, and i'm blind in one eye and paralyzed from t6, complete. i have nothing to lose..

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      • #4
        http://www.acorda.com/products/resea...opment/rhigm22

        http://clinicaltrials.gov/ct2/show/N...and+ms&rank=15
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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        • #5
          unfortunately I do not qualify for the test. but if anybody out there reading this has Tm and still has the ability to stand, please take a look at that study by dr. Levy

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          • #6
            Jenn, both stress you need to be walking to join. Why no on the stem cells? Or are you just against embryonic cells?
            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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            • #7
              It's just for me personally, we'll not have enough knowledge of stem cells for many many years to come - longer than my life time. I'd be afraid of tumours, growths, etc.

              When there are so many other things in the research pipeline, I'd prefer those - including the electrical stimulation!

              Jennifer Spence ‏@lynnifer72 23h
              @AcordaNews http://www.acorda.com/products/resea...opment/rhigm22 ? When will the results of this study be coming out - was it safe?

              Acorda Therapeutics ‏@AcordaNews 15h
              @lynnifer72 we expect to announce the rHIgM22 trial findings in early 2015
              8:23 AM - 8 Aug 2014 ? Details
              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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              • #8
                rHIgM22 sounds promising for people who have relapses like myself. I'm currently having one and this type of medicine sounds like it could help me get back to my everyday activities, but it doesn't sound like it has regenerative properties. aside from my paralyzation in my back I have quite a few areas with permanent damage like my hands. this is why I'm all for stem cell. I do not believe that embryonic or fetal is going to be the choice route for this type of therapy because it will require anti rejection medicines. iPS cell I think is what its going to be used or what I hope it's going to be used. my biggest fear is thatit's decades away. at the rate of which I have relapsed throughout the last 6 years I'm not going to make it.

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                • #9
                  Hi all,
                  i have PPMS and my wife of 35 yrs. is knocking on the door to going from RRMS to SPMS. We were diagnosed 9 yrs apart. Pretty crazy to say the least. I'm really holding out for a trial with Olifactory stem cells from me.

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                  • #10
                    Originally posted by Stsmark View Post
                    Hi all,
                    i have PPMS and my wife of 35 yrs. is knocking on the door to going from RRMS to SPMS. We were diagnosed 9 yrs apart. Pretty crazy to say the least. I'm really holding out for a trial with Olifactory stem cells from me.
                    I'm hoping to see positive results with remyelination drugs and more importantly training the immune system a type of immunotherapy

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                    • #11
                      Well, I still get the flyer for donations to the Transverse Myelitis Assn. Nothing mentioned about this fucking stem cell trial or anything else. Way to keep the hope going, this blows

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                      • #12
                        It seems to me that TM cases would be some of the last to get research. The first would be complete quads and then complete paras. Recent SCIs.

                        With TM, you are usually incomplete. That makes evaluation of the treatment less certain. Did the treatment result in improvement or was that going to happen anyway? And first, recent SCIs will get research. Waiting for the muscles to deteriorate and then giving treatment also makes evaluation unclear. If it was unsuccessful, was it because it provided no spinal cord healing OR was it because the muscles just couldn't come back?

                        When I got TM, about 12 years ago, literature suggested spinal cord cures just 10 years away. We're overdue.
                        TM 2004 T12 incomplete

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                        • #13
                          Never had my hopes in stem cells anyway.
                          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                          T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                          • #14
                            Originally posted by lynnifer View Post
                            It's just for me personally, we'll not have enough knowledge of stem cells for many many years to come - longer than my life time. I'd be afraid of tumours, growths, etc.

                            When there are so many other things in the research pipeline, I'd prefer those - including the electrical stimulation!

                            Jennifer Spence ‏@lynnifer72 23h
                            @AcordaNews http://www.acorda.com/products/resea...opment/rhigm22 ? When will the results of this study be coming out - was it safe?

                            Acorda Therapeutics ‏@AcordaNews 15h
                            @lynnifer72 we expect to announce the rHIgM22 trial findings in early 2015
                            8:23 AM - 8 Aug 2014 ? Details
                            I think that electrical stimulation is a good idea, too.
                            Female, T9 incomplete

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                            • #15
                              https://multiplesclerosisnewstoday.c...ell-therapies/

                              So much for all the projections on what's gonna get cured/treated first, and how many years it will be before stem cells are used and all the other useless shit that comes rolling out of your pie holes. Read it and see, this could be it. Nobody knows shit.

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