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    #16
    Hi George

    Mesenchymal stem cells (MSC) are not in the bone marrow. Hematopoietic stem cells are in the bone marrow
    I'm definitely not a stem cell expert. But if you're correct on this, then the Cleveland Clinic researchers must be wrong?

    Go down to article Cleveland Clinic receives 2.75 million dollar grant to study Stem Cell research for MS http://my.clevelandclinic.org/multip...nter_news.aspx

    Anyways, I'm hoping you're right about a future approved stem cell treatment that will someday "cure" MS.

    Take care,
    KoKo
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #17
      Originally posted by KoKo View Post
      Hi George



      I'm definitely not a stem cell expert. But if you're correct on this, then the Cleveland Clinic researchers must be wrong?

      Go down to article Cleveland Clinic receives 2.75 million dollar grant to study Stem Cell research for MS http://my.clevelandclinic.org/multip...nter_news.aspx

      Anyways, I'm hoping you're right about a future approved stem cell treatment that will someday "cure" MS.

      Take care,
      KoKo
      NIH agrees with the Cleveland researchers:
      http://stemcells.nih.gov/info/basics/basics4.asp

      Apparently, since the 1950's, it's been known that the bone marrow contains at least 2 kinds of stem cells.

      Comment


        #18
        Originally posted by MrsBones View Post
        NIH agrees with the Cleveland researchers:
        http://stemcells.nih.gov/info/basics/basics4.asp

        Apparently, since the 1950's, it's been known that the bone marrow contains at least 2 kinds of stem cells.
        The point being that MSC's cannot reset the immune system (regardless of their location in the human body) because they do not differentiate into blood or immune cells. They may have some other beneficial effect, but resetting the immune system is not one of them so they cannot stop the progression of MS. Only hematopoietic stem cells can do that which is why so far this is the only treatment that has shown any reproducible curative efficacy in a clinical environment. As of today no other therapy of any type can hold a candle to what HSCT has shown.

        References page:

        **URL removed by Moderator in compliance with MSWorld guidelines. please visit this member's profile to see his blog**

        Current cure status:

        **URL removed by Moderator in compliance with MSWorld guidelines. please visit this member's profile to see his blog**

        Comment


          #19
          [QUOTE=georgegoss;1269271]The point being that MSC's cannot reset the immune system (regardless of their location in the human body) because they do not differentiate into blood or immune cells. They may have some other beneficial effect, but resetting the immune system is not one of them so they cannot stop the progression of MS. Only hematopoietic stem cells can do that which is why so far this is the only treatment that has shown any reproducible curative efficacy in a clinical environment. As of today no other therapy of any type can hold a candle to what HSCT has shown.

          References page:

          **URL removed by Moderator in compliance with MSWorld guidelines. please visit this member's profile to see his blog**

          Current cure status:
          **URL removed by Moderator in compliance with MSWorld guidelines. please visit this member's profile to see his blog**


          No, George....the point being that in a disease which goes into remission on its own for many years, a few years without progression in what? 500? 500 PwMS in remission if that's what occurred, happens w/o treatment, it does not mean a cure.

          What I'm saying is that a personal blog with at least 1 factual error is not convincing any one of a cure. I agree that medical tourism is dangerous and full of unscrupulous people preying on those in search of a cure, but damning a procedure or even a type of stem cell as an outright scam when it is still being studied is frankly, ridiculous. Study done by reputable scientists in the proper setting can no more be condemned as a scam than the benefits seen by others outside the study setting, as yours are. We must take a balanced view: until the scientists behind all studies have finished studying all possibilities, we can not say we have a cure, we can not say one procedure is a scam because it isn't what we think it should be and can not say it is not beneficial.

          All we can say is that people have benefited from stem cell research and that we need to do more. The extant of that benefit requires much further study over a longer period of time than a few years before it can even be safely called a valid treatment, let alone a cure.

          I sincerely hope that your treatment has done what you believe it has, but until more study is complete, like these, studying all types of stem cells and stem cell procedures:

          http://clinicaltrials.gov/ct2/result...sclerosis&pg=1

          we can't say that there is absolutely only one way to use stem cells to treat any disease and we can not say it is a cure. It may very well be one day, but until more results are in from well designed, thorough studies we must keep an open mind to all the possibilities.

          Comment


            #20
            Hi George - really interesting blog - thanks for taking the time to write it all up

            How did you actually get in touch with hospital in Germany? Did you just phone them and ask for the treatment?

            Comment


              #21
              HI Koko, I never knew I was a "hemi parsis?" I also use a rollator & wheelchair w/ out. My right side is completely weak & almost useless.
              I don't think I could go thru all that,maybe if I was younger (65). But I've had this monster for almost 11yrs. I guess I've just resigned myself to it.
              I praise anyone who would do it.At least you're using your own stem cells.
              I Praise God if he is "Cured"
              Nona Judy

              Comment


                #22
                Hemiparesis is weakness on one side of the body. It is less severe than hemiplegia, the total paralysis of the arm, leg, and trunk on one side of the body.

                Source: Wikipedia

                Comment


                  #23
                  Nona Judy

                  Nona Judy

                  I praise anyone who would do it.At least you're using your own stem cells.
                  I Praise God if he is "Cured"
                  Yes, I like the idea of using our own stem cells too. It would be great if they can figure out the way to cure MS, as well as other diseases, with this method.

                  HI Koko, I never knew I was a "hemi parsis?" I also use a rollator & wheelchair w/ out. My right side is completely weak & almost useless.
                  Sounds like we have alot in common. I was diagnosed 11years ago too - and my whole right side is affected.

                  With the definition of hemiparesis and hemiplegia that Sequoia provided, I would have to say that I'm pretty darn close to hemiplegia when my body gets too hot or too cold.

                  Take care,
                  KoKo
                  PPMS for 26 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #24
                    I would like to know how you (George) were accepted for the SCT in Germany, how you are today, and what was the cost?

                    Comment


                      #25
                      To be fair I should note that the definition of "cure" depends upon the individual.

                      Based upon the several hematopoietic stem cell transplantation for MS clinical trials to date, they generally (and verifyably consistently & repeatedly) fall into these categories. . .

                      Early relapsing MS cases = halting of all disease progression + quick & substantial reversing (improvement) of existing disability.

                      Later stage progressive MS cases = halting of all disease progression + slow reversal (improvement) of existing disability favoring low EDSS (high ambulation) MS cases.

                      The myeloablative hematopoietic stem cell transplantation treatment (HSCT) that has shown such good curative results is, unfortunately, not available in North America outside of a clinical trial. But because the treatment protocol is basically the same as the protocol used for cancer treatment, I was able to find a suitable treatment facility that met my expectations by searaching the international bone marrow doner website. I then quickly focussed on the Heidelberg University Medical Center that performs HSCT more than 300 times per year. I was very happy to have received treatment at this facility that has effectively cured my MS.

                      But it is NOT necessary to receive treatment at only this facility. Any qualified hospital around the globe can perform this same procedure. This is where your own reasearch will be beneficial as I'm sure less expensive places are available. I can only comment on where I received treatment since I have only done this procedure one time and have no plans to repeat it.

                      Because I used the top stem cell transplantation facility in Europe, the procedure is not cheap as I paid 55,000 Euros plus travel & lodging expenses from California. The question is "how much is a cure for MS worth to you?" That can only be answered by each individual.

                      And I would also like to mention what has become obvious to me while researching and being involved with this adventure in curing my MS disease. . . . . Although it works well for Multiple Sclerosis (and several other autoimmune disorders), an HSCT will not cure every disease. However, it has been shown to have similar (good-to-excellent) curative results for other hematologic-based autoimmune diseases. If I were otherwise afflicted with any of these other types of hematologic-based autoimune disorders (there are likely many more than I have listed here), I would also likely seek the same transplant procedure to cure it:

                      - Rheumatoid arthritis
                      - Scleroderma (Systemic Sclerosis)
                      - Inflammatory Bowel Disease (Chrohn's disease & ulcerative colitis)
                      - Systemic Lupus Erythematosus (SLE)
                      - Polymyositis
                      - Evans syndrome
                      - Hashimoto's thyroiditis
                      - CIDP
                      - Graves' disease
                      - Autoimmune hemolytic anemia
                      - Autoimmune blistering diseases
                      - Autoimmune lymphoproliferative syndrome
                      - Myasthenia gravis
                      - Psoriatic arthritis
                      - Wegener's granulomatosis
                      - Sjögren's syndrome (Mikulicz disease, Sicca syndrome)
                      - Churg-Strauss syndrome
                      - Microscopic polyangiitis
                      - Relapsing polychondritis
                      - Pemphigus vulgaris
                      - Dermatomyositis / Polymyositis
                      - Ankylosing spondylitis

                      Comment


                        #26
                        STEM CELL THERAPY

                        WHAT PHARMACEUTICALS ARE INVESING IN THIS? THERE IS A HUGE DIFFERENCE BETWEEN RESEARCH, STUDY, FDA, AND US. I AM NOT SURE OF THE REAL HEIRARCHY, BUT I KNOW WE ARE LAST. THAT IS WHY IT IS ALL THE MORE IMPORTANT THAT WE LET THOSE AROUND AND ABOVE US KNOW WHAT ARE LIVES ARE LIKE. I HAVE FOUND A VERY DIPLOMATIC WAY OF EXPRESSING HOW MY
                        DAILY BATTLE WITH MS HAPPENS. I LIKE TO CALL IT "PROFESSIONAL COMPLAINING"! JUST JOKING ON THE COMPLAINING. KNOW ONE WANTS TO LISTEN TO SOMEONE WHO HAS ALREADY SUNK THEMSELVES BEFORE LEAVING THE DOCK! I CAN'T REMEMBER ANYTHING ANYMORE, SO YOUR BLOG IS GREAT FOR 'STIRRING UP THE POT". THANKS

                        Comment


                          #27
                          Originally posted by MSersRULE View Post
                          WHAT PHARMACEUTICALS ARE INVESING IN THIS? THERE IS A HUGE DIFFERENCE BETWEEN RESEARCH, STUDY, FDA, AND US. I AM NOT SURE OF THE REAL HEIRARCHY, BUT I KNOW WE ARE LAST. THAT IS WHY IT IS ALL THE MORE IMPORTANT THAT WE LET THOSE AROUND AND ABOVE US KNOW WHAT ARE LIVES ARE LIKE. I HAVE FOUND A VERY DIPLOMATIC WAY OF EXPRESSING HOW MY
                          DAILY BATTLE WITH MS HAPPENS. I LIKE TO CALL IT "PROFESSIONAL COMPLAINING"! JUST JOKING ON THE COMPLAINING. KNOW ONE WANTS TO LISTEN TO SOMEONE WHO HAS ALREADY SUNK THEMSELVES BEFORE LEAVING THE DOCK! I CAN'T REMEMBER ANYTHING ANYMORE, SO YOUR BLOG IS GREAT FOR 'STIRRING UP THE POT". THANKS
                          I like your point of view, MSersRULE. Peripherally expanding on this, work for funding effort to cure MS seems to come down to the question of motive. I'm not a conspiracy theorist kind of guy, but I do think that drug companies have no motivation for finding a cure for MS (although I also don't think they are preventing a cure) so they don't spend any money on such an endeavor. In the end there is no money in curing MS for them. Even the stem cell transplantation curative studies being done today are run by doctors that have only their passion as a driving force. The research doctors are clearly not doing it for the money since they are on fixeded salaries, as decsribed by Richard Burt in this short series of Youtube videos regarding his experience as a researcher to cure MS via stem cell transplantation (I hope the site admin will be reasonable and allow these URL's to be posted):

                          Stem cells [transplantation] to treat MS - MSRA Public Lecture - A/Prof Richard Burt

                          Part 1 -> http://www.youtube.com/watch?v=s3TgP...eature=related

                          Part 2 -> http://www.youtube.com/watch?v=msYTO...eature=channel

                          Part 3 -> http://www.youtube.com/watch?v=8mUwC...eature=channel

                          So in the end it seems to me that establishing a cure for MS (that will eventually become FDA-accepted standard curative therapy) will only have either individul's or Government funding to rely upon. Neither of which seems to have deep pockets these days.

                          As MSers we all know it sucks being last in line. So lets keep up the "passion."

                          ********
                          ** Blog removed by Moderator in compliance with MSWorld guidelines. This may be put in your profile for all registered, logged-in members to see**

                          Comment


                            #28
                            Based upon the several hematopoietic stem cell transplantation for MS clinical trials to date, they generally (and verifyably consistently & repeatedly) fall into these categories. . .

                            Early relapsing MS cases = halting of all disease progression + quick & substantial reversing (improvement) of existing disability.

                            Later stage progressive MS cases = halting of all disease progression + slow reversal (improvement) of existing disability favoring low EDSS (high ambulation) MS cases.
                            That doesn't narrow it down much. Define "progression". Is that "inflammatory attacks" and/or nerve degeneration? Define "improvements". Is that repair of damaged nerves, regrowth of myelin, or some level of improvement due to an anti inflamatory impact.
                            Steve
                            sometimes you can't make it on your own

                            Comment


                              #29
                              Originally posted by skreynolds57 View Post
                              That doesn't narrow it down much. Define "progression". Is that "inflammatory attacks" and/or nerve degeneration? Define "improvements". Is that repair of damaged nerves, regrowth of myelin, or some level of improvement due to an anti inflamatory impact.
                              Very fair question. But I'm sure I won't need to spoon-feed anyone this info since taking the time to read the clinical trial results will reveal the answer. Which is. . . . .

                              Both "progression" and "improvement" are measured based upon "clinical symptomatic status" (which is the EDSS score of individual patients). Disease symptomatic progression is stopped and most people following HSCT have improvement (reversal) in their EDSS score (which translates into practical daily improvement in symptoms & function). In the end this is the only meaningful result for people with MS. The lesion activity of the brain, although helpful and interesting for diagnosis & study purposes, has little meaning to people battling MS.

                              Comment


                                #30
                                Originally posted by georgegoss View Post
                                Very fair question. But I'm sure I won't need to spoon-feed anyone this info since taking the time to read the clinical trial results will reveal the answer. Which is. . . . .

                                Both "progression" and "improvement" are measured based upon "clinical symptomatic status" (which is the EDSS score of individual patients). Disease symptomatic progression is stopped and most people following HSCT have improvement (reversal) in their EDSS score (which translates into practical daily improvement in symptoms & function). In the end this is the only meaningful result for people with MS. The lesion activity of the brain, although helpful and interesting for diagnosis & study purposes, has little meaning to people battling MS.
                                Not that it has any specific relevance to any other individual. . . . I just share my own personal status as an example. . . . . Since completing my stem cell transplantation procedure one year ago my EDSS has improved by one full point (I was EDSS 3.5 prior to HSCT, and now am at 2.5. I expect this to continue to slowly improve over time. I'm hoping to be down to EDSS 1.5 in another year.) And this is all while taking no drugs of any type for treatment of MS. (After 15 years of use I stopped taking Avonex in November, 2009 just prior to my treatment.)

                                My symptomatic improvement is actualy surprising since I was SPMS which virtually never sees any improvement of any kind. So I was on the continuum between RRMS (which shows the greatest benefit from HSCT) and advanced progressive cases (that see the least benefit from HSCT). So for my SPMS case I have seen stopping of disease progrssion + slow but continuos symptomatic improvement.

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