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    #31
    Sad News...Jerry Here is your answer

    Jerry- you asked for the name of someone who's had hsct and it failed...unfortunately this brave young man announced yesterday that the treatment in fact failed for him....his name is Asher....he is a friend of George Goss and is dealing with his stem cell procedure failing. I am praying for him tonight.

    This makes me terribley sad as I really was hoping this was the magic bullet I was hoping for. Good luck Asher if you read this.

    **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 UserCP > Edit Details**

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      #32
      I posted the Url in my UProfile

      Jerry and Others- I posted the url to the forum where Asher made his announcement about HSCT failure in my profile. If you guys follow this treatment as closely as I think you do you probably have already seen the post. Its over at the "ThisisMS" forum and Ashers story is titled something like "my ctrl alt delete". I didnt sleep a minute last night and am deeply troubled by this announcement because like you Jerry I thought with HSCT and CHEMO we stopped the disease...damage might stay but progression was halted.

      I realize that there have been successes with this procedure...many of them...but I wanted this to be the big-gun I had in my back pocket for when I truly needed it. This thought was keeping me sane....

      Comment


        #33
        I very much understand the feelings that Asher is going through. I had my own experience several years although I was never given the expectation of a cure or any level of certainty when dealing with the clinic in Costa Rica. Sure we had great hopes.

        From the get go on HSCT I objected to the use of the word "cure" and it frustrates me that it has been used. Please people, this disease is bad enough without careless an unthoughtful words used by other PWMS.
        Steve
        sometimes you can't make it on your own

        Comment


          #34
          Hopeful,
          What are you talking about? I just read the post from Asher on June 12, 2012 and he is recovering very well. He lists his positive body changes, in just about every effected bodily function. His EDSS has improved from 4.5 to 4.0. He no longer has a problem with heat sensitivity, and so on. I can't believe you take this change as a 'failure'. Am I misreading ? The procedure has not failed according to Asher. Why would you report the info this way ?

          Comment


            #35
            skreynolds57,
            Go to Hopeful4Future's Profile and look up the url that pertains to Asher's treatment. Se if you mthink it is a 'failure'. Am I missing something ?
            Asher continues to recommend HSCT. Have I missed something ?

            Comment


              #36
              I just need to clarify the last post I wrote. Asher Cohen has been posting on another MS blog that his HSCT has been improving his life post MS. I reference his posts of July 2011 through March of this year , 2012, when he passed the 9 month milestone. Go look for yourselves. First hand account by Asher himself.

              Comment


                #37
                I promised honest reporting, so here we go. It took some 10-12 months for the chemo fog of HSCT to clear before I could start telling how I was really doing. The benefits and improvements I had reported were real but 14-15 months post transplantation I started to notice I had stopped to improve and I also noticed small and subtle signs that my MS was still active and that I am getting worse again

                Jerry this is what the URL sent me to from Asher in 2010. Not a cure. EDSS going from 4.5 to 4.0, good news, any help from PT?, not a cure. I didn't use the word.
                Steve
                sometimes you can't make it on your own

                Comment


                  #38
                  Steve (skreynolds57),
                  This is what Asher posted in June of 2012:
                  Heat intolerance (or tolerance if you like) is entirely 100% resolved
                  - Vertigo 90% resolved (NOW 100%)
                  - Bowel movement issues entirely resolved
                  - Urgency 70% resolved (UP TO ABOUT 80%)
                  - Optic-neuritis 80% resolved
                  - Spasms in right leg 90% resolved (NOW 100%)
                  - Purple foot 80% resolved (NOW NEARLY 100%)
                  - I sleep well and wake up fresher as compared to pre-HSCT
                  - 16 hour days with no need for a nap
                  - Walking range back to pre HSCT (700 meters) (NOW UP TO 1 KILOMETER) without walking aids.
                  - Speech and swallowing entirely restored
                  - I can write a whole sentence again and I find it easier to button my shirt
                  - Finally, I regularly (NOW DAILY) sport on my home trainer and I am (STILL) making impressive progress.

                  Finally, some post HSCT reflections:

                  For people with more advanced MS and accumulated neural damage, HSCT is by no means a quick fix. Neural and motor functions will, at best, slowly and only partially recover. At worst, over time you will only notice that disease and disability progression have been halted. So bottom line, the key words are SLOW, PARTIAL and STOPPING PROGRESSION. Any thing beyond this should not be expected and should be regarded as a bonus; else you setting yourself up for a serious disillusion. Btw, I have been told that such a 'bonus' is not likely to be granted in the first year post HSCT.

                  Also, do not underestimate the residual effects of chemo. It is not nearly as dangerous as many may believe, but it is by no means a benign procedure and it will certainly put your patients and resilience to the test.

                  Am I happy I did this? Much more; I am grateful, for every breath I take, for every day I live! For as long as it lasts, MS no longer terrorizes me, and it no longer progressively robs me of my dignity.

                  Happy to take any questions. Yours, Asher

                  This is the point I have been pushing. Remember this was posted in June of 2012, this year. Where does it say he considers this a failure? Someone's blowing smoke and I ain't a chimney !
                  And you can't deny that it looks like something positive is happening. It's as plain as the nose on your face. I am waiting for an email from George Goss presently. George is regular contact with Asher.

                  Comment


                    #39
                    Just received an email from George Goss. He stated, unequivocably, that he and Asher Cohen are doing well and have had their MS 100% stopped. Some of their deficits have been mitigated, some are lessened. Most of their deficits that began with the onset of their MS. The post from Hopeful4Future was 100% in error. I asked the guy who is closest to the source. If I can reach Asher, I will confirm with him, personally. But as far as I can ascertain, Asher is doing well and realizes that his deficits will not correct themselves 100%. He was suffering from MS for 14 years. His world is a different place today.

                    Comment


                      #40
                      While I'm not certain how you can quantify the change in certain symptoms, its clear, he's improved and that's good, whatever the reason. Given the variation in the mechanism and course of MS from person to person, combined with the frustrating prospects of meaningful treatment options from conventional sources (beyond what we know is only marginally decent at best), I can fault anyone for seeking an alternative.

                      In any case Jerry, I'll make you a deal, I'll refrain from using the word "failure" (not that I have), if you'll refrain from using the word "cure", which is really my only objection on this subject. Time will tell but for the time being its a option for which some have reported great benefits from.
                      Steve
                      sometimes you can't make it on your own

                      Comment


                        #41
                        Steve,
                        I'll make that deal ! I never used the term 'cure', George does, although. But you can see my objection to Hopeful's post. And my thinking is, where did the quotes attributed to Asher's 'failure' comments come from? Since he is clearly refuting that now. I think it is 'criminally' irresponsible to post an untruth for this MS population, who have so little offerings from the medical world.

                        Comment


                          #42
                          Blatant disregard of facts

                          Jerry- I have to say I have respected your presence here and your advocacy for this procedure because I needed to here positive statements that provide me hope but I am done with this nonsense....I am not sure why you are choosing to claim that I am misrespresenting the facts when its you that either hasnt read the url I put in my UP or you possibly dont want to admit the facts. And based on the blatant disregard of facts that I have presented I'm not sure what your agenda truly is. With you I can only assume its wishful thinking and with Mr. Goss I can only assume he hasn't spoken with Asher in months because I'd hate to believe he's misrepresnting his friend Asher's WORSENING MS.

                          In the posts above you state you are referencing how Asher reported feeling in JUNE! In my post I am referencing Ashers own self-report....NOT GEORGE'S.....on September 26th....THAT was just last Friday. A lot changes in 4 months...just ask me I have RR MULTIPLE SCLEROSIS AND CHILDREN under 12.

                          So In case you only care what happened 4 months ago than don't bother reading below.....but......in case you actually care what REALLY IS currently going on with Asher, here is firsthand account from HIS report not Georges!

                          Hi,

                          The next chapter in an evolving story...

                          I promised honest reporting, so here we go. It took some 10-12 months for the chemo fog of HSCT to clear before I could start telling how I was really doing. The benefits and improvements I had reported were real but 14-15 months post transplantation I started to notice I had stopped to improve and I also noticed small and subtle signs that my MS was still active and that I am getting worse again. You see, after 15 years of MS one becomes extremely attuned and accurate about the slightest and most subtle changes in your physique. I'll spare you the details, but HSCT has stopped working for me and to quote George "this is a probability game, no guarantees".

                          So I'm back to square one. I let no grass grow under my feet and I have been to see Prof. Slavin in Tel-Aviv Israel two weeks ago. He is a remarkable person, took his time, was very thorough and very candid. Bottom line, you may have already guessed, the next 10 days I'll be on my way to Tel-Aviv for a BMA, 3 months after which I will go to Switzerland to have the cultured MSC's pumped into my failing body. If this works and should I experience even modest improvement, I'm willing to repeat this procedure once every 12-18 months (provided the Prof. is willing to adopt such a strategy).

                          So a somewhat somber post spiced with hope, yours, Asher
                          In another post from last FRIDAY not June 2012 he seems to be asking Mr. Goss for advice on why his treatment failed....

                          And still so much remains an enigma: why do the statistics show some 70% of SP and some PP patients benefit from HSCT? Is it that they were wrongly diagnosed, or is it that the neurodegenerative process does involve some kind of inflammatory activity? Perhaps George could offer some perspective?
                          And lastly nowhere did I state that Asher wasn't still a proponent of HSCT or MSC....I was simply answering a question that.....you Jerry, on September 22 at 6:50 stated this.....

                          Steve,
                          What I have uncovered on the internet, leads me to believe that HSCT can be the cure that all of us have craved for 150 years. I am simply saying that if you can prove to me that you have found someone that had the chemo/ablative treatment and stem cell replacement ( using one's own stem cells ) and did NOT rid themselves of MS, I want to hear the story.
                          There you have it Jerry I just gave you the NAME and the STORY of somone who had C/A treatment with SCR and failed and you still disregard the facts as they are and tell me I am misrepresenting something.

                          Is it true that HSCT helps some...thank the Lord, YES. Are there failures.....sadly now we assuredly know that yes there is and I sleep less and worry more knowing it.

                          Jerry- I am and will continue to be a huge proponent of this procedure and will continue to be an advocate for it and will likely be a patient of it but knowing and admitting the failures of treatment regimens only makes us work harder on developing treatment options. If you bury your head in the sand and ignore the failures of HSCT you look foolish. Like someone who lacks the intelligence to see reality or maybe worse unwilling and alot like some of the advocates here selling snake oil.

                          Prospective patients who are hurting dont need that, pioneering Doctors dont need that. Those exploring this procedure need honesty not antagonistic rhetoric punctuated by old misinformation even if it is to support an agenda that's worthwhile.

                          Get better information, read up to date sites, and dont rely on those pushing a side of the issue to give you their interpretation of how someone in another country is doing physically. Especially when you look foolish and tell someone posting facts they are wrong.

                          Comment


                            #43
                            Hopeful,
                            Sorry for missing the post from Asher about his condition. And sorry for lumping you into the 'Negative nellie' group. I believe it came a day after I posted that I didn't believe your account of his condition. I am sorry for my misstatement. I simply didn't read his account because it wasn't there when I posted. I am glad to hear that you have been tolerating my presence. Much obliged. You do realize that there are many here who do not look for their own answers and wait for their neuros to relay info. I am not one of them.

                            I see that Asher is in contact with Prof. Slavin in Israel regarding another try at treatment.
                            The thing that matters to me is that our (MS ) community keeps pushing for improvements in treatments. I never will believe that there is a simple, one size fits all, solution (treatment ) . It doesn't matter how the MonSter is 'bottled up'. I just want the terror to end. But I will try to stay open minded to reasonable ' new ' treatments. It seems that Dr. Burt and Prof. Slavin have some solid ideas for treating MS patients. I want to hear from those that have experienced positive and negative outcomes.. There is something to be learned from both sides.

                            Comment


                              #44
                              Have you had the treatment?


                              Originally posted by JerryD View Post
                              I don't imply that his response, positive as it seems to me, has anything to do with George's education or degree. My implication is that George knows and understands the science. And can describe the procedure, in lay terms.
                              I am saying that HSCT has been used on many more patients than I have found, and they have been treated successfully. George has explained it on his blog to my satisfaction.
                              I wish you all would search him out and I know these other ideas of stem cell replacement ( and their questionable successes ) would lose their luster.
                              George has researched this treatment. He went through it. Now he is living without MS. That says, to me, that we should all have the opportunity to have the HSCT procedure.
                              But, once it has been proven effective and approved by the FDA, it will be on the list of treatments like the drugs. Or maybe not? If you are truly looking to get rid of this disease, this seems to be the only way. Prove me wrong.

                              Comment


                                #45
                                I haven't had the HSCT treatment. I have been trying to follow the advancements of this procedure for 3 years. I am dx'd with PPMS and that sub-group is always in the 'exclusions' list when looking at a clinical trial. But I do know that George Goss from California, Asher Cohen, Alex Normandin, Edwin McClure(sp), Carmel Turner and a host of others have had varying degrees of success with this treatment.
                                But don't be fooled by treatments that are done at foreign clinics, for cash payment, that are not using chemotherapy for ablation. I am sure the medical community around the world has some handle on the 'best practices' for this 'stem cell replacement' therapy

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