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The only one real cure for MS

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    The only one real cure for MS

    I see so much confusion in the community regarding stem cells for treatment of MS, which can be broadly categorized into two areas:

    Stem cell "infusions" = Have so far not demonstrated any scientifically verifiable & reproducible clinical benefit (beyond a placebo effect) with lasting curative efficacy. But much of the in-vitro science certainly looks quite promising and hopefully will someday be shown to reverse existing damage in MS patients. Unfortunately not quite there yet.

    Stem cell "transplants" = Utilizes one's own adult hematopoietic stem cells and is currently completeing FDA phase II clinical trials and "scientifically" is the only legitimate medical treatment that currently shows excellent curative results for MS patients. This procedure uses chemotherapy to correct the underlying defective autoreactivity of the immune system that simple stem cell "infusions" cannot accomplish. So no chemotherapy = no cure.

    I compiled relevant info & literature on the subject. . .

    ***URL removed per MS World guidelines. You may put it in your Profile if you wish.***

    #2
    I don't see them as a cure, but I do feel that they'll be a beneficial treatment IF the powers that be ever get off their collective butts to actually help us!
    “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
    Diagnosed 1979

    Comment


      #3
      Link to relevant information on Hematopoietic Stem Cell Transplantation (HSCT) posted in my profile.

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        #4
        Which One ?

        Hi Geogegoss,
        Where did you do your stem cell transplantation ? Are you 100% cured ?
        Tony

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          #5
          Hi Tony,

          Am I "cured" of MS? Short answer. . . yes, I'm cured of MS. Long answer. . . it depends how you define "cure." My diseases progression has been 100% stopped since my treatment and all of my pre-treatment symptoms are slowly reversing (improving). Several of my pre-existing MS symptoms have completely disappeared.

          I received my treatment at Heidelberg Universwity Hospital in Germany.

          All the details of of my treatment and subsequent cure status are in my blog. But unfortunately this website won't let me post a URL link even though it's obvious that I'm not a spammer. The link is listed in my profile. But perhaps it is easier to Google "the ms cure blogspot" and my blog URL should come up first. Then you can read all about the details.

          Best regards,

          George

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            #6
            sorry but i dont buy it.
            im not calling you a liar, just that i need prof of long term results (like 10 years) to even think about calling this a cure
            Learn from yesterday
            Live for today
            Hope for tomorrow

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              #7
              George, I hope for your sake that you are right and that you remain in remission. However, there is no real cure for MS and it isn't fair to the newly diagnosed who visit here to put forth the idea that there is.

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                #8
                "there is no real cure for MS." Wrong.

                Don't take my word for it, or anyone that says otherwise. Check out the science for yourself and make your own judgement.

                Hematopoietic Stem Cell Transplantation (HSCT) works and is absolutely the only "scientifically" verifiable treatment that has curative efficacy. It is currently in the final stage of FDA phase II clinical trials with phase III trials planned to begin 2014. This will become the only FDA approved therapy when the stage III clinical trials are completed.

                To just scratch the surface google this article and also check out my scientific references page of my blog (listed in my profile with many other reputable & legitimate source articles listed). Remember, don't take anyone's word for it, one way or the other. Check it out yourself!. . . .

                Scientists Reverse Early MS With Patients' Own Stem Cells (from the Medical News Today website)

                After an average follow-up of three years after receiving their transplants (which took place between January 2003 and February 2005), 17 patients (81 per cent) improved by at least one point on a [EDSS] disability scale. And for all [100%] patients, the disease had stopped progressing.

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                  #9
                  Hey George

                  I went to the blog and found it very interesting.

                  It was quite alot for me to absorb in one sitting - so I'll need to read (and probably re-read!)

                  I have a question, if you don't mind. You said:

                  That is, although counterintuitive, people with more advanced MS disease status don't fair as well as people that receive a stem cell transplant cure while treated earlier in the MS disease cycle in which they are still RRMS and/or ambulatory. So this means late stage progressive disease + high EDSS (low ambulation capability) = poorer chance to reverse disease disability, although it does look like the disease progression can still be "stopped" in such advanced cases. But by that time much of the neurologic damage is already done and it may not reverse much, if at all.
                  I'm wondering why that is. Stem cells wouldn't know or care how advanced the MS was. I don't understand why it wouldn't work as well?

                  I can walk with roller walker, and am basically hemi-paresis (I think that is what you call it when very immobile/weak on one side.)

                  Anyways, your blog is very encouraging - now if the US could speed it up a little!

                  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


                    #10
                    George

                    Also the Mellen Center for MS (where I have been a few times) has been doing stem cell research.

                    They are using the Mesechymal (MSC's) - the primitive cells in the bone marrow.

                    Supposedly these can lessen nervous system damage by developing into cells resembling neurons and support cells. Also they're supposed to create a tissue network that reduces disease damage and encourages intrinsic repair mechanisms. Seems like that would work for those with more severe disability?

                    Not sure if that research is finished, or what the results were.

                    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


                      #11
                      Originally posted by georgegoss View Post

                      Scientists Reverse Early MS With Patients' Own Stem Cells (from the Medical News Today website)

                      After an average follow-up of three years after receiving their transplants (which took place between January 2003 and February 2005), 17 patients (81 per cent) improved by at least one point on a [EDSS] disability scale. And for all [100%] patients, the disease had stopped progressing.

                      5 patients in that very small (21 participants for those that didn't want to do the math) uncontrolled study relapsed. They went into remission after further immunosuppression. Doesn't sound "curative" for everyone, in fact for those 5, it probably doesn't seem much different from existing treatments.

                      I have to say my friend, dx'd at 6 or 7 years old, has gone from being totally wheelchair dependent to walking without assistance at least 3 times during her lifetime (she's in her early 40's now) with nothing more than the occasional round of steroids. That would be a few points on the EDSS scale. She maintained those improvements more than 3 years each time (15 or so the last time) before eventually relapsing. People are able to and quite often do, improve by and maintain at least one point in the EDSS scale with or without treatment, particularly early in the disease.

                      As with all MS treatments, without controlled or even better... controlled, randomized and blinded studies (whenever possible and ethical) with a larger group of participants, it's very hard to see if those benefits are due to the treatment or is just the natural course of the disease.

                      The largest group I saw so far was 350, 275 of which registered to the database providing the info on which controlled studies are being based. Of those 275 registered, only 88 had MS (described as progressive MS in the articles). Overall, 2/3rds of the patients experienced a "benefit" using the EDSS.

                      In MS, specifically: 24 were described as "better", 27 as "stable", 7 as "better than progressed" and 17 were "worse". Nothing more specific was provided. All very encouraging, but until compared to controls in a structured study, it's not much more than that - encouraging.

                      The article mentioned above states that this treatment is most beneficial early in the disease when we know the body does its best remyelinating all on its own with lesions disappearing, remissions lasting longer and patients experience more complete recovery and remissions. Again, is it the treatment, natural course of the disease or both?

                      I have read the science, George, and decided for myself.

                      The existing published studies are surely intriguing, definitely promising and encourage further study. But, until the patients receiving this treatment can show greater benefits than those on existing treatments or for that matter, no treatment, it is definitely too early to call anything here a cure. A treatment to develop and base future research on, yes, but not yet a cure.

                      I sincerely hope that you maintain the improvements you've seen so far.

                      Comment


                        #12
                        PROOF

                        isnt there someone with this board that can check this out and let everyone know if if it is true or not.I have wasted enough money on things that I thought might work and Id be willing to try this but I would like some proof.

                        Comment


                          #13
                          Hi Skinner

                          isnt there someone with this board that can check this out and let everyone know if if it is true or not.
                          There is no way we can say if any one person's stem cell treatment has helped them or not. But what is true is that the FDA and the International Society for Stem Cell Research does not promote traveling abroad for Stem Cell Treatments at this time.

                          The research for this type of treatment is still in the preliminary stage.

                          http://www.isscr.org/clinical_trans/

                          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


                            #14
                            Not sure that I'd call it a cure. Maybe someday but I feel "cure" is very misleading. It will be another decade before they know that.

                            I had MSCT a year ago starting in Israel. Although I've had some benefit, it has not stopped the progression at all. Would I recommend it? If you have the $$ and desire, why not.

                            I'm thrilled to hear that your progression stopped! You paid a very high price for it, I'm sure, and as a pioneer, what they've learned from you is precious indeed.

                            Good luck, but please, use caution with the word 'cure'. It's not proven yet and it's certainly not available yet.
                            I'm not perfect....just forgiven!

                            Comment


                              #15
                              Some good info on feedback. Thanks to everyone. I'll just toss in a few more pieces of info for what its worth. . . . . .

                              Definitely most overseas stem cell treatment facilities are just scams. They offer stem cell "infusions" that offer no scientifically-verifiable or reproducible benefit beyond a placebo effect. Basically stated. . . . no chemotherapy = no cure. The reason is because a cure requires that the body's underlying defective immune autoreactivity be reset. Just infusing stem cells into the body does not accomplish this. But eliminating and then re-installing un-programmed hematopoietic stem cells following bone marrow ablation does "reset" the body's immune system to stop the defective autoreactivity. The only reason I went overseas (Germany) is because it is not yet possible to receive this treatment in the United States outside of a clinical trial. But I did go to a reputable (Heidelberg University Hospital) bone marrow/stem cell transplantation facility to have the procedure performed (they do more than 300 transplants per year, for cancer).

                              Mesenchymal stem cells (MSC) are not in the bone marrow. Hematopoietic stem cells are in the bone marrow. Using mesenchymal stem cells (MSC) does not work because MSC's do not differentiate into blood immune cells. They only differentiate into connective tissue, bone cells or fat tissue. They do not differentiate into any type of immune cells or any type of nerve tissue. Although they do produce a limited amount of cytokines for some possible beneficial nervous tissue effect, there is no possibility that MSC's will reset the defective autoreactivity of the immune system that causes MS in any treatment. Facilities that offer such treatment are just a sham treatment that steal people’s money & hope. Remember. . . no ablative chemotherapy = no cure (because there is no immune system "reset" with naive 'unprogrammed' immune cells populating the immune system).

                              The clinical study at Northwestern in Chicago is not the only clinical trial that is ongoing. There are also clinical trials at the Fred Hutchinson Cancer Research Center in Seattle, the University of Louisville and at the University of Ottawa. All three study programs have different treatment protocols. The main difference being that the Chicago protocol is not "myeloablative," as the Seattle program is (and which is the treatment I received). The Chicago protocol under the direction of Dr. Burt is only “lymphoablative.” This is likely why a few of the patients relapsed. None of the myeloablative-treated patients have relapsed at all. But I don’t need to tell everyone about this since all the data is public and can be discovered directly. Sorry to mention this since these issues should be obvious.

                              The studies to date clearly indicate that people treated earlier in the disease cycle fair better than those treated later. So on the continuum of disease status, early RRMS has the greatest probability to be completely reversed by HSCT while on the other hand late stage disease has the least possibility for symptomatic reversal, but likely the disease progression can still be completely stopped. The reason is because early disease is characterized by nerve demyelination and progressive disease status is characterized by axonal dystrophy. Two different mechanisms of pathology.

                              So summary. . . . since the early 1990’s more than 500 people with MS have been treated with Hematopoietic Stem Cell Transplantation (HSCT). For the most severe (progressive + EDSS >6.0) cases have shown disease remission (halting of progression). For early RRMS cases, often complete reversal (total improvement) has been shown.

                              HSCT will likely become standard FDA-approved curative MS therapy sometime between 2020 and 2025. For now if you want it, it can still be had.

                              You can go to my blog detailing my experience & status (disease stopped + reversing/improving) now at one-year following my transplant on my blog that is listed in my profile.

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