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    #16
    HSCT

    Originally posted by JerryD View Post
    Thanks for your responses, nela2011 ! I am glad that my 'antagonistic' approach hasn't turned you away ! I have a 'gut' feeling that there is way to 'stomp' this MonSter ! And I hear you when you comment about the 'slowing' the progression of your MS! I don't 'buy' into that thought process ! It's like saying that 'You will continue to bleed from your wounds, but you won't bleed out and die !' ! I guess MS is a good thing like having the 'stigmata' ! I am not Padre Pio, I have a chronic disease that must be stopped ! Thanks again for your responses ! Good luck
    No problem
    I just got on the waiting list this past January. I'll update here as soon as I have a date for my treatment 👍🏻

    Comment


      #17
      Hi AlexMS1964,

      Please be very wary of Stem Cell America. A supposed testimonial is not a legitimate result. Unfortunately, they are only feeding off desperate patients, willing to pay them big bucks for their unproven treatment.

      The International Society for Stem Cell Research (ISSCR)
      lists these warning signs that a stem cell treatment is not legitimate:

      -The same stem cells are used to treat multiple diseases.

      -The source of the stem cells is not clearly documented.

      -How the treatment will be done is not clearly documented in a "protocol" that serves as the medical practitioner's operating manual for the procedure.

      -Claims there is no risk. All medical procedures carry some risk.

      -High cost or hidden costs. Legitimate clinical trials don't charge patients. Some even pay them to participate.

      http://www.webmd.com/a-to-z-guides/f...g-signs?page=2
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

      Comment


        #18
        AlexMS1964,
        I appreciate that you have 'weighed in' on this stem cell dialogue but I don't believe that there are any reliable stem cell clinics in the U.S., other than those FDA sanctioned clinical trials, like the trials performed by Dr. Burt at Northwestern and Dr. Sadiq at Tisch MS research center at NYU. Advertisements and testimonials are NOT acceptable proof of anything ! Heed the words that Kimba has posted ! Good luck Thanks for playing !

        Comment


          #19
          The U.K. press is reporting encouraging results for the use of adult stem cells to treat multiple sclerosis (MS). "Remarkable" and "miraculous" are descriptions from some of the doctors who treated the patients, made detailed examinations of their progress, and scientifically validated the observations. The results are part of an FDA-approved, ongoing clinical trial, with collaborations between investigators in the U.S., U.K., Sweden and Brazil. The phase 3 trial originally started in 2006, and has been adding patients and observing results since that time.

          The adult stem cell treatment procedure was developed by Dr. Richard Burt of Northwestern University Feinberg School of Medicine, and is a variation of some standard cancer treatments. MS is an autoimmune condition, where some of the body’s immune cells have gone rogue and started to attack the body’s own nervous tissue, leading to the neurological symptoms seen with MS. Patients' adult stem cells were collected from bone marrow or blood, and then they received chemotherapy to kill the rogue immune cells. After this conditioning step, the patient’s adult stem cells were re*infused into their body and made their home in the bone marrow, where they produced fresh immune cells. The process acts to “reboot” the immune system.

          In early 2015, the international group reported some of their own initial results with relapsing*-remitting MS patients that were surprising. Not only did the adult stem cell reboot stop disease progression, but it actually reversed the neurological disability for many patients. As their peer*-reviewed publication in JAMA noted, no FDA-*approved therapy has reversed MS symptoms or improved quality of life for these patients. However, the adult stem cell treatment which they administered improved the neurological condition of the patients, in some cases putting them into a remission from the MS. Dr. Burt noted that this is the only therapy to date shown to reverse neurologic deficits in relapsing-*remitting MS.

          A separate U.K. research team is testing the use of adult stem cells for progressive MS. The team, led by Dr. Neil J. Scolding at the University of Bristol, had previously published promising results from a preliminary safety trial in the use of a patient’s own bone marrow adult stem cells for MS. In 2015, they published the design of an expanded clinical trial with potential to treat progressive MS. The FDA*-approved phase 2 trial, which differs from the relapsing-*remitting trial in that no chemotherapy conditioning is used, is currently recruiting patients.

          In the most recent update of the trial for relapsing-remitting MS, Steven Storey, a marathon runner who became wheelchair*-bound and was virtually paralyzed talked about how four months of the treatment he could stand, and within ten months did a mile*long swim and could walk again. Another patient, Holly Drewry, also became wheelchair-bound from her MS. She started to notice changes in her strength just days after her treatment, and soon walked out of the hospital.




          https://www.worldhealth.net/news/adu...rosis-in-tria/

          Comment


            #20
            Originally posted by Kimba22 View Post
            Hi AlexMS1964,

            Please be very wary of Stem Cell America. A supposed testimonial is not a legitimate result. Unfortunately, they are only feeding off desperate patients, willing to pay them big bucks for their unproven treatment.

            The International Society for Stem Cell Research (ISSCR)
            lists these warning signs that a stem cell treatment is not legitimate:

            -The same stem cells are used to treat multiple diseases.

            -The source of the stem cells is not clearly documented.

            -How the treatment will be done is not clearly documented in a "protocol" that serves as the medical practitioner's operating manual for the procedure.

            -Claims there is no risk. All medical procedures carry some risk.

            -High cost or hidden costs. Legitimate clinical trials don't charge patients. Some even pay them to participate.

            http://www.webmd.com/a-to-z-guides/f...g-signs?page=2
            There is a difference between Stem cell therapy and HSCT ( chemo involved) Stem cell therapy is a scam. The protocol being done (with very good results) at the facilities oversee its very similar than the one being done by Dr. Burt in Chicago.

            Comment


              #21
              Thanks Marco . A very happy bedtime story ! I am glad to hear your summary of this intense subject . I am curious about this stem cell clinic that was mentioned in the earlier post. No FDA oversight ? lol

              Comment


                #22
                I know it's frustrating, Jerry, to not see stem cell therapy get much coverage in this forum and in other MS forums/publications and I do hope this changes. Thanks, Marco, for providing a nice summary of HSCT study results. We are our own best advocates/educators and, hopefully, more and more people will see posts like yours and feel more hopeful. I received HSCT in September 2014 in Chicago (Dr. Burt) and, while there is still residual damage ( and probably always will be), I feel like it gave me a new lease on life. I'm back to work full time now, my fatigue is minimal as is my saddle anesthesia and my spasticity issues. I don't call it a cure, but, for RRMSrs, it's the best thing out there and I hope it will be available to more SPMSrs and PPMSrs at some point too.

                Comment


                  #23
                  Thanks for responding, CaroleK ! I missed you ! I haven't seen your posts for a long time ! I am happy to hear that your HSCT is keeping the MonSter away !

                  Comment


                    #24
                    HSCT Date

                    Originally posted by nela2011 View Post
                    No problem
                    I just got on the waiting list this past January. I'll update here as soon as I have a date for my treatment 👍🏻
                    Update:
                    My date is February 27, 2017. Can't wait!

                    Comment


                      #25
                      That's great, Nela2011 ! I am really praying for you ! HSCT in Evanston at Northwestern holds the best promise of taming the MS beast ! Best wishes. I'm pulling for you !

                      Comment


                        #26
                        Originally posted by JerryD View Post
                        That's great, Nela2011 ! I am really praying for you ! HSCT in Evanston at Northwestern holds the best promise of taming the MS beast ! Best wishes. I'm pulling for you !
                        Thank you so much JerryD!
                        I'll keep you posted

                        Comment


                          #27
                          I started this thread, a year ago. Not much has changed, as far as I'm concerned . There have been a few responses from MSer's who shared their 'real world' experiences. On the whole, I can't believe that Dr. Burt has performed HSCT on, at least, 100+ MSer's and there has been very little information disseminated to the MS community, the people most affected by this blight !
                          Thanks to you all who pay close attention to the developments in conquering this beast!

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