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    #31
    The reason I asked is having gone through SCT and familiar with many others who have is that what happens if you have inflamation, the treatment knocks that down and you get better. If you don't you won't. There's nothing wrong with that but once your symptoms go away or improve, one can continue to improve by physical therapy, etc.

    Its not just about improving EDSS scores, steroids can do that. Remission can do that. For many of us it will take actual repair. And what is preventing another attack?
    Steve
    sometimes you can't make it on your own

    Comment


      #32
      Originally posted by skreynolds57 View Post
      The reason I asked is having gone through SCT and familiar with many others who have is that what happens if you have inflamation, the treatment knocks that down and you get better. If you don't you won't. There's nothing wrong with that but once your symptoms go away or improve, one can continue to improve by physical therapy, etc.

      Its not just about improving EDSS scores, steroids can do that. Remission can do that. For many of us it will take actual repair. And what is preventing another attack?
      Hi Steve,

      Thanks for you comments.

      You had a stem cell transplant? Congratulations to you for taking control of your disease. (BTW. . . I just gotta ask so I'm clear. . . you had chemotherapy to ablate your immune system as part of your stem cell transplantation, right? If not, then it is only a stem cell treatment, which is a completely different procedure.)

      And to add some responses to you comments:

      ". . . . and familiar with many others who have [had stem cell transplantation]" = Really? Many? I'm not aware that there have been more than several hundred people in the entire world so far that have received a stem cell transplantation over the past 20 years. Where were all these people treated? I'd appreciate knowing more.

      ". . . .others who have is that what happens if you have inflamation, the treatment knocks that down and you get better. If you don't you won't." = Partially agree, especially on the inflammation part (for RRMS cases). Definitely the mechanism of nerve damage is different during the early (RRMS) phase of the disease (inflammation) compared with the later stage (progressive) phase of the disease (axonal dystrophy). So following the hematopoietic stem cell transplantation (HSCT) the mechanism of nerve repair is also different. RRMS recovery is to form scar tissie over the demylinated nerves which can result in quick & substantial desease reversal (functional improvement). On the other hand if the disease is stopped during the later (progressive) stage of the disease then the body must re-route the nerve impulses around the damaged areas (much the same way stroke patients can regain some functioning). This process is quite slow which is why functional improvement is substantially slower following HSCT with progressive cases as compared to relapsing cases.

      "Its not just about improving EDSS scores, steroids can do that." = I have to disagree with this statement. Steriods only provide temporary improvement that can bring someone out of an episode faster but has no permanent lasting beneficial effect on disability. In the end steroids will not reduce disability over the long term. This is why steriods do not qualify as a cure and is also why steriods are not standard/usual therapy for progressive cases.

      "Remission can do that [too]" = Again, having any remission(s) is also evidence that exacerbations are occuring. If that's the case then the MS disease activity is not stopped (and therefore not cured).

      Actual meaningful) repair can only happen once the body stops attacking the nerve tissue and the active MS disease activity stops. Once the autoreactive attacks stop then the body can begin to perform repair and/or compensation that is not further undercut by additional attacks.

      "And what is preventing another attack?" = This is a great question that cuts right to the point of why HSCT has so far demonstrated the only verifiable & reproducible ability to stop the MS disease process. HSCT first destroys the existing immune cells that have the damaging autoreactivity (due to their faulty immune memory) that causes MS. Once the entire immune system is wiped out by chemotherapy then one's own immature (and unprogrammed) stem cells are re-installed that allows them to repopulate the bone marrow and produce new T-cells that that lack autoreactive programming and therefore no longer attack the tissues of the body. Correcting this defective autoreactivity is key and is why just infusing stem cells alone doesn't work.) Following HSCT the immune system still has to be "retrained" to recognize diseases, which is why people need be re-vaccinated for all childhood diseases again following HSCT. Additional strong evidence that the body "forget" how to attack itself.

      Comment


        #33
        No chemotherapy so it is not the same

        so if one is not having inflammatory attacks, how is this process going to initiate repair, however slow. Based on my MRIs the doctors have said my disease activity is in the bottom 5%. I don't have attacks.
        Steve
        sometimes you can't make it on your own

        Comment


          #34
          Hey George,

          Are you aware of any professional puplications out there that are detailing results of these procedures?

          A Believer,

          Comment


            #35
            (Please excuse me, my understanding of this is pathetic...)

            Calling it a 'cure' is a bit disingenuous, isn't it? You may get a "fresh" immune system so to speak, but that does not mean that whatever caused your immune system to go haywire in the first place has been fixed. It could just as likely occur again, correct?

            So it is more accurate to call it a 'promising treatment' as it stands now, correct? We will need to see the long-term effects of this treatment, which will take decades...

            Comment


              #36
              Originally posted by Badaimata View Post
              Hey George,

              Are you aware of any professional puplications out there that are detailing results of these procedures?

              A Believer,
              Never mind George, I found it on your web site (thanks to a friend), don't know why I didn't see it the first time.

              But here's another question for you if you get time, are you doing anything to stimulate your recovery from the neural damage done by the MS?

              Comment


                #37
                @skreynolds57 - If you are individually having success with your treatment, that's great! More power to you for improved health. It's just unfortunate that stem cell infusion treatments have not demonstrated a single verififiable repeatible benefit in a population study.

                @Luongo - Using the word "cure" is completely dependent upon the definition nomenclature. I have always been consistent with my definition of a cure being "stopping the progression of the disease." So no, it is not disingenuous. And in fact, by my own definition I have done better than cure my disease because I have actually had substantial reversal/improvement of my existing symptoms that had arisen prior to my stem cell transplantation. And regarding your comment about a spontaneous re-occurence of my MS progression. . . . yes, I suppose it's possible. But because my body also lost it's memory for all childhood diseases due to the treatment (and I required complete disease re-vaccination for childhood diseases) I would not expect that for some unexplained "magical" reason my body would somehow once again regain it's lost memory of fighting diseases. As a logical extension of this surrogate indicator I would not expect that my body would "magically" reactivate my body's MS autoreactivity. From the initial phase I clinical trials of HSCT performed in 2000, not a single person has had a reoccurence of MS disease progression. In other words, the disease appears to be permanently stopped via stem cell transplantations. Don't take my word for it. Go look at the clinical trial results which repeatedly show consistent results. Nothing else can hold a candle to this based on scientifically-obtained results. However, if you require 30 years of disease-free progression, we're not quite there yet. As for me, I didn't want to wait 30 years for that result when I would be severely disabled. I'm happy that I am currently MS progression-free, and continue to be. This has enabled me to get further away from a wheelchair, as opposed to closer.

                @Badaimata - Glad you could find my scientific & clinical references page (also listed in my profile). As of now I have done nothing beyond my hematopoietic transplantation procedure (HSCT). So now at this point since my body's MS defective autoreactivity has stopped attacking my nerves I am experiencing a continual slow reversal/improvement of my existing clinical symptoms without any medications or additional treatment. But perhaps that might be a possible future avenue of additional treatment to "then" do stem cell infusions post-transplant. It certainly seems like a potentially promising avenue, although not yet studied (post-transplant).

                Comment


                  #38
                  George, I apologize for my imprecision. My disease activity has always been very low, long before I had any stem cell treatment. While there always has been (for 15 plus years) a gradual and continuous loss of function it has never improved by any treatment such as steroids. My reason for getting SCT was to hopefully initiate repair of damage nerves, not to stop the disease.

                  Since that did not happen , my question is simply to know how the procedure you received was able to repair damaged nerves, beyond that which comes from stopping the disease (i.e. inflammation) and not including the body rerouting signals or what can be achieved via physical therapy.
                  Steve
                  sometimes you can't make it on your own

                  Comment


                    #39
                    Originally posted by skreynolds57 View Post
                    George, I apologize for my imprecision. My disease activity has always been very low, long before I had any stem cell treatment. While there always has been (for 15 plus years) a gradual and continuous loss of function it has never improved by any treatment such as steroids. My reason for getting SCT was to hopefully initiate repair of damage nerves, not to stop the disease.

                    Since that did not happen , my question is simply to know how the procedure you received was able to repair damaged nerves, beyond that which comes from stopping the disease (i.e. inflammation) and not including the body rerouting signals or what can be achieved via physical therapy.
                    Great comments. Again, I salute you for being proactive and taking control of your disease! I like the way you have approached your disease and in the end I'm sure that everyone has the same goal. . . . eradication of MS.

                    It sounds like you and I had some similar MS progression history. For the first ten years I was RRMS and then the last five years (prior to my HSCT) I was SPMS. At first I had also considered a stem cell infusion procedure because the underlying science appears to be sound and the in-vitro (test tube) research and results have shown some remarkable things going on at the cellular level. It's just unfortunate that these results have yet to be shown to carry over in-vivo (in the body) with reproducible benefits in a polulation study. Like many people I still hold out hope that eventually the researchers will discover the key and it will eventually show confirmed beneficial effect in repairing nerve function. Although I still wonder how effective this will be if the underlying destructive deasese process is not also stopped.

                    So in thinking about the underlying disease activity, this is why I looked into HSCT because it actually has shown curative efficacy in several poulation trials that have been amazingly consistent (which is the scientific gold standard for curative confirmation). It seems that once the body's defective autoreactivity (T-cell attacks upon the nerve tissue) is stopped following HSCT, then the body is able to repair/compensate on it's own with no additional intervention. Since I have now improved (so far) by one EDSS point one-year following my HSCT (was 3.5, now 2.5 and hope to improve further over time), I'm glad that I no longer take any drugs or treatments at all.

                    But perhaps this is where the next big advance might be made? . . . . . . stem cell infusions to repair pre-existing damage that has remained since my HSCT procedure. Definitely I plan to keep an eye on this promising area of research and if postive curative results are scientifically demonstrated, I would definitely consider to accept such treatment if I can close the gap on my residual EDSS deficit.

                    Hope your day is well!

                    Comment


                      #40
                      George, I hope there is progress made on fixing damage although I'm not hopeful. In the near future anyway. For those early in the disease and at a lower level of the EDSS stopping progression, however defined or accomplished, will be a great thing there can be no doubt.
                      Steve
                      sometimes you can't make it on your own

                      Comment


                        #41
                        I spoke to one of the neuros that has been involved with a lot of the recent MS drug trials over here in Oz (i.e. campath, fingolimod etc)

                        She has been involved in discussions with the team running the HALT MS trial in the States.

                        According the discussions that she has had a number of patients that have recieved HSCT have evidence of new lesions after their immune system has reconstituted (about 4 years out).

                        What do you think George?

                        Comment


                          #42
                          Originally posted by batman12 View Post
                          I spoke to one of the neuros that has been involved with a lot of the recent MS drug trials over here in Oz (i.e. campath, fingolimod etc)

                          She has been involved in discussions with the team running the HALT MS trial in the States.

                          According the discussions that she has had a number of patients that have recieved HSCT have evidence of new lesions after their immune system has reconstituted (about 4 years out).

                          What do you think George?
                          Although not cures themselves, the initial treatment data with Campath and Fingolimod look quite good. Much better than the current CRAB drugs. That's good that your neuro is talking about them. I wished they had been around when I was diagnosed 15 years ago (I used Avonex until my HSCT).

                          Regarding your original question. . . . I certainly wouldn't want to accuse your neurologist of being disingenuous. But for whatever reason I do think she's wrong, operating from bad information. For me I'd rather see data & evidence instead of hearsay. Perhaps this is an opportunity to educate her on this subject? (Seems like many neurologists are great at prescribing drugs. But they seem to me to be quite slow to become fully aware of the curative efficacy of HSCT.)

                          This most recent summary (it is customary to only provide status summaries until the final clinical trial evaluation & report is completed at some future date) from the HALT-MS research team indicates relatively consistent stopping (and improvement) of MS disease progression with absolutely no new MRI lesion activity in any of the treated patients. And also on the positive side all treated patients have stopped taking all immunomodulator drugs (same as me) since the transplant procedure.

                          This clinical data page describes the three patient's clinical status that have just passed the four year post-transplantation milestone:

                          http://www.bcm.edu/neurology/pdf/pos...HALTMS_aan.pdf

                          Overall current HALT-MS clinical trial treatment result data summary:

                          http://www.bcm.edu/neurology/pdf/pos...er_HALT-MS.pdf

                          As for my own personal experience, I am now 14 months post-transplant and my EDSS has improved from 3.5 (pre-transplantation) to currently (near) 2.0. All without any MS medication, of course. I hope it continues but I suspect that the "rate" of my improvement will eventually slow, even though I never expect to again have wosening MS symptoms. C'est la vie.

                          Comment


                            #43
                            Originally posted by jojo18 View Post
                            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
                            George,
                            Do not be upset with MSWorld. Their guidelines prohibit posting of URL's because if they did NOT, then there would be TOOOOO many URL's and would confound the posting rooms.

                            JOJO,
                            I have to agree with you. As a researcher, I need to see long term proof of anything calling itself a "cure". Not that I do not believe your anecdotal experience George, but one persons "cure" may not "fit all". I am happy for YOU, don't get me wrong.
                            Live simply. Love generously. Care deeply. Speak kindly.

                            Comment


                              #44
                              Hi George...I have been following this thread with great interest to say the least! I have been to your blogspot...have read the entire thing and am working my way thru your archives. As someone before me said, I thank you very much for taking the time to relate to us so much detailed, well researched information including all the links to your research sources...I wish you all the best with your recovery. My wife Carey is the MS'er...dx 4/09 with PPMS...lesions limited to spine...symptoms are primarily limited to left leg/foot...uses a Walk Aide for foot drop...no cane yet but I see it in the near future...no EDDS score but her progression seems at a point similar to yours pre-HSCT. I'm having a difficult time getting her as interested in the procedure as I am...probably because it's a pretty drastic step to take for any MS'er. BUT, I'm pretty much convinced that it's the only game in town right now that actually has a chance to halt the progression of this crap. A couple of quick questions if I may (and probably more to follow if I might be so bold and you so kind as to respond):

                              - You often mention 80% - 85% chance of experiencing substantial reversing/improvement of existing physical deficit. Is this a Dr. Burt conclusion or other?
                              - I'm curious as to your choice of clinics...what were the main determing factors of you chosing Heidelberg University Hospital and what were your other top choices?

                              Again, thank you for all the time & effort you spent to help educate those of us not satisfied with a "slowing of the progression".

                              Thanks - Brad

                              Comment


                                #45
                                Originally posted by bspotts1 View Post
                                Hi George...I have been following this thread with great interest to say the least! I have been to your blogspot...have read the entire thing and am working my way thru your archives. As someone before me said, I thank you very much for taking the time to relate to us so much detailed, well researched information including all the links to your research sources...I wish you all the best with your recovery. My wife Carey is the MS'er...dx 4/09 with PPMS...lesions limited to spine...symptoms are primarily limited to left leg/foot...uses a Walk Aide for foot drop...no cane yet but I see it in the near future...no EDDS score but her progression seems at a point similar to yours pre-HSCT. I'm having a difficult time getting her as interested in the procedure as I am...probably because it's a pretty drastic step to take for any MS'er. BUT, I'm pretty much convinced that it's the only game in town right now that actually has a chance to halt the progression of this crap. A couple of quick questions if I may (and probably more to follow if I might be so bold and you so kind as to respond):

                                - You often mention 80% - 85% chance of experiencing substantial reversing/improvement of existing physical deficit. Is this a Dr. Burt conclusion or other?
                                - I'm curious as to your choice of clinics...what were the main determing factors of you chosing Heidelberg University Hospital and what were your other top choices?

                                Again, thank you for all the time & effort you spent to help educate those of us not satisfied with a "slowing of the progression".

                                Thanks - Brad
                                Sorry for my tardiness in my response here.

                                Thank you for your comments, JOJO. Much appreciated.

                                Also. . . I'll first apologize for my following long-winded response. I'm sorry for that.

                                Hi Brad,

                                Thank you for the nice feedback and bestwishes. But I also have to say. . . . wow. You actually went through my whole blog? That's a lot of verbosity and I salute your fortitude to wade through all of it. It was easy for me to write because I just spent a few minutes every day as I went through the (transplantation) experience and completed it all a little at a time. And it also kept me focussed during the treatment, as well. But if the info can help anyone else, thats great.

                                Just a side note. . . . filtering out all the other false-starts (and failed interest) there are now three other people that are getting lined up to follow in my footsteps to receive HSCT outside of a clinical trial for their MS. I plan to at least post regarding the first one, and perhaps the others too, unless they wish privacy regarding their treatment.

                                I have also come to understand why people might be hesitant to get this treatment as curative therapy for their MS. It is definitely a serious procedure, not to be taken lightly. (But honestly. . . it's significantly reduced risk now with absolutely no deaths associated with the treatment with the updated phase II treatment protocols that no longer use TBI.) I can completely understand people being scared of the chemo, making one feeling quite ill for a week. But the good news is that when it's over, it's over. Not having to repeat it again and so far every treated patient discontinues all MS disease-modifying drugs following the procedure. (I love no longer injecting interferon!) The ironic (or conundrum) part of the treatment is that it works better if performed earlier in the disease cycle when MS symptoms are not as serious as opposed to later in the disease cycle when the treatment shows less curative efficacy. I can completely understand how people that are not badly afflicted with MS could wonder why they would need to undergo a serious procedure like HSCT to stop their disease progression. But in actuality, early is the better time to do it.

                                BTW. . . just for anyone else reading that might be interested. . . . As a curative treatment HSCT works by changing the body's overall T-cell epitope (antigen binding) repretoire, inactivating autoimmunity (making the body's immune cells "antigen naive") which results in restoration of immune self tolerance. This is often referred to as "resetting" the immune system that stops the underlying MS disease activity & progression. Once acheived, the body then has a chance to repair (or compensate for) some of the existing neural damage that is not undermined by further MS disease progression, often resulting in symptomatic improvement.

                                And I also understand that there are people that will not agree with the following comment. . . . but it sounds like both you and I completely agree that indeeed HSCT is absolutely (currently) the only medically-verifiable & reproducible treatment that will stop MS disease progression and frequently provide permanent symptomatic improvement. Once the FDA phase III clinical trials (currently in-progress) are complete, I'm certain this will become standard curative therapy for MS.

                                Regarding your questions. . . .

                                The 80-85% reversal (or symptomatic improvement) success numbers is the result shown by both the programs in Chicago with Dr. Burt doing the MIST trial, and in Seattle by Dr. Nash in the HALT-MS trial. Both of these trials are showing consistent results which are substantially similar. Another great indicator (from two different facilities) that HSCT works. (Just so I'm not mis-characterizing it . . . 100% of RRMS cases have their disease progression "stopped." Then, the 80% improvement rate is for "number of people" seeing reversal/improvement, not the actual degree of improvement seen across the population.)

                                Regarding my choice of clinic (Heidelberg University Hospital, Germany). . . . I chose Heidelberg because of several factors, as follows:

                                First, once I read the scientific literature on HSCT and was convinced of the science I tried (unsuccessfully) to enter both the HALT trial and the MIST trial here in the US but was rejected from both because I was SPMS which is automatic disqualification from both trials. (Just like in all clinical trials, they "cherry pick" the patients that they believe will respond best to therapy (RRMS) even though other MS cases can benefit, as well. You have to remember that the objective of a clinical trial is not to help individual patients. The purpose of a clinical trial is to prove/disprove a hypothesis in the context of a population. Progressive patients be damned.)

                                Second, HSCT treatment for MS outside of a clinical trial in the US is impossible to receive because no treatment facility will accept the potential liability for treating an autoimmune condition (until it becomes FDA approved later this decade, or early the next). So that means going overseas. There are A LOT of disreputable treatment centers all around the world, so people should be very careful not to get scammed and receive a dangerous ineffective treatment elsewhere. However, Heidelberg is Europe's top #1 cancer research and treatment center (as good as, if not better than, centers here in the US.) They perform over 300 stem cell transplantation procedures every year for cancer, so they have fantastically good treatment safety. (For my own BEAM protocol they have a mortality rate of 1%, or less. Nearly the same as Dr. Burt's protocol at NWU.) And because I know that Germans are good at following strict procedures, I went with Heidelberg because I knew I would be getting the best treatment with the safest possible outcome. Luckily, everything did go fine and I had virtually no unexpected side effects. (In fact, the only real side effect from the procedure is that my MS completely stopped progressing, and reversed. On top of that, after 15 years of use, no more Avonex injections. Life's great!) On the same subject of hospitals I also considered. . . . I also looked at the Apollo Hospital network in India. I communicated with them (they will treat anyone), and Apollo was my backup plan if I could not get the treatment in Heidelberg. I also heard that Haddasah-Hebrew Medical Center in Tel-Aviv, Israel will perform the treatment. But I have never communicated with them.

                                Onto your wife's PPMS. . . you have my empathy for your (her) situation. My own thinking about PPMS is that the worst part of having this course of the disease is the uncertaintly it brings to the future life. It seems that it is hard to plan longer-term when it's impossible to know for certain what disability status one will have to deal with. I might think that the only way to overcome this insideous part of MS is to just stop the disease progression. Just my opinion of course, but if I were in the same situation then I would be seeking just a halting of the disease. That way I might be able to restore a degree of certaintly to my future life. It turns out that for even the worst cases of advanced non-ambulatory PPMS cases that were treated in the phase I clinical trials, roughly two-thirds of people were able to successfully have their PPMS disease progression stopped. (It's now been ten years since this early trial, and to date 100% of the people that had their disease stopped are still in remission and progression-free to this day. A strong indicator that HSCT has permanent curative efficacy.) But here's a unexplained finding from the phase I trial. . . . SPMS patients and PPMS patients with equivalent EDSS levels did not see idential curative efficacy. The SPMS people had roughly an 80% disease halting. Once the MS disease pathology enters a progressive phase, the nerve damage mechanism is dominated by axonal dystrophy (not inflamatory demeylination.) So why would SPMS patients fair better (80%) following HSCT compared to PPMS patients (66%)? This has never been elucidated or theorized by the researchers. From this point forward they just focussed on RRMS. But still, even the worst PPMS cases have better-than-even odds of stopping the disease, even if they don't show much symptomatic improvement, if at all. But also, interpolating from other ambulatory (EDSS <6.0) SPMS cases from the early clinical trial (this also applies to my own case as an example), I think there is some indication that people with an ambulatory PPMS (EDSS <6.0), there is still a chance to experience some symptomatic improvement. It's impossible to be certain for any individual, but I certainly think it better then zero percent chance. If I were personally PPMS with an ambulatory status, in my case I would go for HSCT. At the very least, I would have a good shot at restoring better certaintly to my future.

                                BTW, I describe the effect of relative probability of MS disease "halting" and "improvement" effects versus disease status that I have summarized into a single graph. You can find it on my June 23, 2010 blog page titled "Stem Cell Transplantation (Scientific) Reference Information."

                                And on my February 24, 2010 blog page titled "Day +58 - Lessons learned & practical info," near the bottom you can find my e-mail address if you have any interest to shoot me a message. I'm happy to share what I have learned.

                                My very sincere bestwishes for your wife's good health.

                                - George

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