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    Why isn't this board filled with news about stem cell results?

    I have been waiting for these message boards to be humming with posts from other MSers, besides me, to comment about the results of Dr Burt's HSCT trials and Dr. Sadiq's MSC-NP phase I, soon to be phase II, trial ! Can anyone tell me why there is so little interest from this community in these stem cell procedures, since these treatments seem to be better in stopping MS than any of the drugs offered at this time? And the mortality rates and negative side effects seem to be better than the drugs, as well ! I feel like I am missing something obvious. Like I am not getting the joke.
    I have bheen laying low for a few days and there hasn't been any chatter! What gives ?

    #2
    I don't know much about it, about anything really. I know the lady who heads the MS support group said a while back she's been put on a waiting list for the trails in Ohio I think. I'll ask her about it. I thought the stem cells didn't always work? There was that actress from The Sopranos on Dr. OZ last week who came out that she has MS, who had fetal stem cells and she said that didn't work for her. She's says her doctor is very confident that there will be a cure in the next 10 years. Made no mention what that cure is. I'm confused about stem cells. Do they work or not?

    Comment


      #3
      Taking a wait & see approach

      I have been following this in the news & waiting to hear more. It definitely sounds promising!! From my understanding, the procedure is no walk in the park (ummm...but neither is having MS!). If I understand it correct - and I may not - the first step is to kill off your immune system completely via chemotherapy, then part II is the stem cell transplant to replenish your crappy immune system with one that is healthy & working normally.

      The other part of this that I think I understood - please jump in if I am misinformed - is that once a person goes through this, the use of DMTs if it doesn't work is no longer an option. I'm wondering if the primary target audience initially (assuming it goes through) will be those with PPMS or SPMS?

      I'm newly Dx'd and watching the news reports. The prospects are VERY promising!

      Cheryl
      Cranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)

      Comment


        #4
        Jerry, you might want to look at the Bart's MS blog. They've talked in depth about this recently.

        Legitimate stem cell therapy is dangerous. And there is no head to head evidence that it's more effective than strong treatments like Lemtrada.

        Comment


          #5
          Originally posted by JerryD View Post
          I have been waiting for these message boards to be humming with posts from other MSers, besides me, to comment about the results of Dr Burt's HSCT trials and Dr. Sadiq's MSC-NP phase I, soon to be phase II, trial ! Can anyone tell me why there is so little interest from this community in these stem cell procedures, since these treatments seem to be better in stopping MS than any of the drugs offered at this time? And the mortality rates and negative side effects seem to be better than the drugs, as well ! I feel like I am missing something obvious. Like I am not getting the joke.
          I have bheen laying low for a few days and there hasn't been any chatter! What gives ?
          Hi Jerry

          I don't think there will be much more news with the Tisch MS Research until they recruit for this summer (2016) clinical trials.

          This is still the most recent news, (that I can find), and it is extremely hopeful - reverse of disability and repair of damage:

          http://tischms.org/news/fda-advises-...-cell-trial-ms
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            So, let's get some things clear about stem cell procedures that seem to be 'really' working ! When I posted on this board, I was writing about the HSCT procedure done in Northwestern Univ. by Dr. Richard Burt and the stem cell procedure performed by Dr. Saud Sadiq. Dr. Burt's procedure has expressly excluded patients who have 'progressive' forms of MS . Dr. Sadiq's treatment has been the only stem cell procedure that is performed, specifically, on patients with SPMS and PPMS. Both procedures use the patients own stem cells (homeopoetic? stem cells ). There is a lot to know about stem cell procedures but I haven't heard of a stem cell procedure in Ohio? Where is that clinic and what doctor is performing it? The Cleveland Clinic? I could be wrong with this stuff! You know about 'cog fog' !

            Comment


              #7
              Jerry you are one of the few on this site who actually dares to dream of a CURE. Bravo! Some of us think, "it won't be that bad". Some believe they can conquer the disease with organic vegetables, exercise and meditation. Some take Copaxone for years while the flares keep coming and they end up in a wheelchair. Some would risk their lives taking aggressive treatments. Some have given up.

              You are the one who says, 'its time to stop pretending this disease is no big deal, it's time to expose the true horrors that it can bring.''Its time to demand a cure'

              I'm with you. I don't know if Dr. Burt's treatment is the answer for everyone but it sure sounds promising. I talked to his nurse over the phone and sent them a letter. They never responded.

              Comment


                #8
                palmtree, thanks for recognizing me and my rants. Thank you, thank you, thank you ! Because of the unrelenting misery of this disease most people eventually write us off ! I am happy that you get it! Good luck

                Comment


                  #9
                  Originally posted by palmtree View Post
                  I talked to his nurse over the phone and sent them a letter. They never responded.
                  My application was denied via email. I responded asking why I was denied, but they never responded. That's frustrating and doesn't encourage me to stay involved or suggest their program to others. I still refer people to Dr. Burt's trial information, but is it too much to ask for a basic response?

                  Comment


                    #10
                    Marco,
                    Dr. Burt's folks are immune to our suffering and neglect. That's no excuse for showing this type of ignorance, but it is what it is ! It's just another kick in the shorts. What a surprise ! I'm glad to see you are still staying with this /us because, Marco, you offer very good perspectives. Good luck

                    Comment


                      #11
                      As I continue on my search for information about stem cell treatment for MS, I found that the 'Telegraph' newspaper of London (online) has been reporting for a few years about the progress of stem cell procedures around the world. Most of the articles use the word 'miraculous'. And none ever reported any deaths attributed to the stem cell treatments. There have been a very few patients that have died from things not related to the stem cell treatments! I wish that I could gather the results and outcomes of all of the pertinent stem cell treatments. But such is life in the 'experimental treatment' world of MS.
                      Some readers of this site have responded that these procedures are dangerous and use fetal stem cells. I think that these procedures can be dangerous because of the chemo used in the 'ablation' of the patients immune system . And the successful procedures use the patients own 'revitalized' stem cells (analogous hematopoetic). As far as I can discover, there are many patents that have had these stem cell replacements from hospitals in the U.S., Canada, Israel, Russia and more. Anyone have anything to add ?

                      Comment


                        #12
                        HSCT

                        Originally posted by JerryD View Post
                        As I continue on my search for information about stem cell treatment for MS, I found that the 'Telegraph' newspaper of London (online) has been reporting for a few years about the progress of stem cell procedures around the world. Most of the articles use the word 'miraculous'. And none ever reported any deaths attributed to the stem cell treatments. There have been a very few patients that have died from things not related to the stem cell treatments! I wish that I could gather the results and outcomes of all of the pertinent stem cell treatments. But such is life in the 'experimental treatment' world of MS.
                        Some readers of this site have responded that these procedures are dangerous and use fetal stem cells. I think that these procedures can be dangerous because of the chemo used in the 'ablation' of the patients immune system . And the successful procedures use the patients own 'revitalized' stem cells (analogous hematopoetic). As far as I can discover, there are many patents that have had these stem cell replacements from hospitals in the U.S., Canada, Israel, Russia and more. Anyone have anything to add ?
                        Hi jerryD!
                        I believe HSCT is going to be the standard treatment for MS in the future. Unfortunately it's not going to be anytime soon. HSCT it's being done successfully overseas ( Russia, Germany, Mexico) not only RRMS patients but also PPMS and SPMS patients too. I am on the waiting list for Mexico. You can join the Facebook forums and learn first hand from the people that has done it/ doing it right now. This is the main forum

                        **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**

                        Comment


                          #13
                          nela2011, I know about the Facebook groups but I never seem to navigate them very well. I joined the site that George Goss posts on. Thank God for George, he says that he has been clear of this MonSter for 6 years. A real pioneer. Please follow the mods instructions so that I can get the URL ! Thanks,
                          JerryD

                          Comment


                            #14
                            HSCT

                            Originally posted by JerryD View Post
                            nela2011, I know about the Facebook groups but I never seem to navigate them very well. I joined the site that George Goss posts on. Thank God for George, he says that he has been clear of this MonSter for 6 years. A real pioneer. Please follow the mods instructions so that I can get the URL ! Thanks,
                            JerryD
                            JerryD, that's the one I'm talking about. There are several HSCT groups on Facebook. I placed one of the URL addresses on my profile. I'm not sure if I did it right. You can have access to George Goss's and so many more blogs of people that have had HSCT successfully. I have finally gotten some answers to some of my questions by reading these groups files and talking to the members. I was tired of hearing "you have no new or active lesions your MS is stable" after every MRI. Really? So how come I went from no disability to walking with a cane in 4 years? Don't get me wrong. I'm on Tysabri and I think it finally delayed the progression but HSCT will stop it and no more DMDs in the future.

                            Comment


                              #15
                              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

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