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No interest in Dr. Sadiq's stem cell treatment for progressive MS?

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    No interest in Dr. Sadiq's stem cell treatment for progressive MS?

    This forum is supposed to be targeted at PPMS people! Yet, there is no discussion on this board about the first and only stem cell treatment designed to halt progressive MS and repair some of the damage done to the nervous system ( Dr. Sadiq's stem cell trial at Tisch MS Research center NYU) !
    Isn't anyone curious about this? I would love to read some comments/responses if only to prove to me that I'm not the only PPMSer that is 'chasing this rabbit' !

    #2
    Just searched Dr. Saud Sadiq and found some info that I will check out. I'm always curious to what's happening to help us.

    Comment


      #3
      Originally posted by JerryD View Post
      This forum is supposed to be targeted at PPMS people! Yet, there is no discussion on this board about the first and only stem cell treatment designed to halt progressive MS and repair some of the damage done to the nervous system ( Dr. Sadiq's stem cell trial at Tisch MS Research center NYU) !
      Isn't anyone curious about this? I would love to read some comments/responses if only to prove to me that I'm not the only PPMSer that is 'chasing this rabbit' !
      Hi Jerry

      Yes!

      Waiting to hear something, anything, about the recruitment for the clinical trial this summer.
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        when I called them, they told me the last trial was full and that they were not taking any more applicants. That is when I stopped paying attention to it because I want to wait and see what the final numbers say.
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          hunterd, I take your response to mean that you reached out to the Tisch center in NYC. They only admitted participants that are patients of the IMSMP. Nice for them! Sucks for us ! As far as waiting for results to be published, don't make me laugh! Where will this information 'magically' appear ?

          Comment


            #6
            The promise off stem cells has always far exceeded the medical realities of the treatments. Virtually ever stem cell claim remains "in process," but the media reports them as a "cure." So while I believe stem cell treatments may eventually pan out they aren't reality for me today.
            • I was declined admission to Dr. Burt's study so there's not much I can do until the results come in.
            • I am waiting for more information for Dr. Sadiq's study to become available.
            • I keep seeing reports of patients traveling overseas for "stem cell" and aren't even sure what technique(s) are being used. Patients end up spending thousands and ending up only poorer.


            I am also not a grass is greener kinda guy. While I long for better future treatments, there are only so many available for today. A future with Ocrelizumab and anti-LINGO-1 seems to look decent and both should be available LONG before HSCT is FDA-approved. I am currently trying to start Rituximab because of the similarities with Ocrelizumab. So for now, I'm going to just try to mow the grass I have. I wish you all well ...

            Comment


              #7
              Marco,
              Overseas for stem cell treatments ? You have been at this a lot longer than me ! I am surprised that you haven't heard of George Goss ! He had stem cell replacement treatment in Heidelberg, 2 or 3 years ago ! I used to email him from time to time but I got so busy that I lost touch with him. You could 'Google' his name and I believe that he posts his thoughts on a blog ! There are other people, I assume, that have undergone stem cell replacement and resumed their 'happy' lives. I don't know for certain. The overseas treatments are very expensive and the patient is on the hook for the whole bill !

              Comment


                #8
                Originally posted by hunterd View Post
                when I called them, they told me the last trial was full and that they were not taking any more applicants. That is when I stopped paying attention to it because I want to wait and see what the final numbers say.
                Sorry, this was the wrong trial.I do have an email that I sent to them requesting any further information. I got mixed up.
                hunterd/HuntOP/Dave
                volunteer
                MS World
                hunterd@msworld.org
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN

                Comment


                  #9
                  Originally posted by JerryD View Post
                  You have been at this a lot longer than me ! I am surprised that you haven't heard of George Goss!
                  I am familiar. Right now, I know someone getting 'HSCT' in Russia and another in Panama. I only hope they are not getting completely duped out of their money. I remember when CCSVI was the rage and patients that did not respond were told, "come back in 6 months and we'll try it again." Of course, the second course of treatment was just as expensive as the initial treatment. In many cases, medical tourism is such a racket. I do know American doctors that also treat (vision/dental) in Mexico at a reduced rate, but follow ups are here in the US. It's also a lot easier to see a new dental veneers than what happened after the "lights went out" before surgery.


                  I want better treatment options for us all, but truly believe the silver bullet still remains in the future and is probably not stem cell. I wish you well and hope a cure for all of us is much closer than it appears.

                  Comment


                    #10
                    Marco,
                    I was writing a post to you and I 'fumbled' and lost the post. George Goss has a blog called 'the Cure for Multiple Sclerosis' . Read it and show me where it seems like 'snake oil' . George was treated in Heidelberg, Germany, in 2009. He received his stem cell transplantation around Christmas of that year. No MS since then. It has been 6 years and he is 'clear' of MS.
                    I am curious why anyone would travel to Mexico for HSCT or any other 'stem cell' treatment . I can understand going to Russia for HSCT . Dr. Fedorenko has been recognized as one of the few that has performed the procedure, successfully. I wouldn't trust any of these stem cell clinics 'south of the border' or in the Caribbean !
                    I am pushing George's story because he appears to me to be the 'real deal' ! I am always looking for the 'best' solution, like you. For today, HSCT looks like it is, today. But Dr. Sadiq in NYC seems to have a stem cell treatment that could do the trick. Good luck

                    Comment


                      #11
                      We both agree if you are going to travel abroad to get stem cell, or any treatment, there are better options than others. Patients need to do their homework before beginning any therapy, but especially when shelling out a king's ransom and placing your life in a stranger's hands.


                      I believe we need to clearly define how we define "cure" when we are talking about MS. A patient with limited disability may consider preventing future damage as a cure, but a wheelchair bound patient may not consider anything a cure that doesn't permit normal ambulation.

                      • Is stopping future disease progression enough to declare a cure? If so, for how long?
                      • What about restoring function or repairing damage? What baseline is used?
                      • Does your MRI have to be lesion free? Old lesions removed, no evidence of demyelination? Or just that no new lesions are realized? If so at what T-strength should the measurement be made? At what intervals and for how long?
                      • What about a vaccine that just prevents new people from getting MS? Wouldn't that be a cure for everyone but existing MS patients? Is that good enough?


                      This about other "cures" for MS or MS symptoms:
                      • My baclofen pump restored MUCH of my function, but I would never suggest it's a cure for anything. The pump did help resolve the majority of my spasticity related symptoms, but the underlying condition remains. Turn my pump off and I'll again be a heap of smelly stuff barely able to move.
                      • At times, Lemtrada is referred to as a "poor man's stem cell" and has a number of patients claiming it cured them.
                      • There are stories of CCSVI patients claiming they were cured.
                      • Bee sting therapy has a number of patients claiming they were cured.
                      • Wahl's diet (or another 15 diets) have patients claiming they were cured.


                      The list goes on and on from legitimate symptom abatement, to halting measurement of disease progression to outright snake oil salesmanship.


                      I personally see George Goss and a patient that died from stem cell treatment as two data points expressing the extremes of possibilities. Neither depicts the average possibility of stem cell treatments, but both are actual possibilities.


                      George Goss claims he's cured because for years he hasn't noticed any progression over a significant portion of time. RRMS patients can go 10+ years between flare ups or noticeable progression. By Goss' measurement would these patients be "cured" year 5, 6, 7, etc? Normally, we would state the patients were simply in remission for a number of years where the disease may have, or may have not, progressed without their knowledge.


                      Goss also claims he has symptom improvement, but admits he maintains residual damage that has not recovered. Consider patients with optic neuritis - some get incomplete recovery, while others get compete recovery. However, both groups would still test positive for MS. Would a neurologist currently reviewing Goss' medical records diagnose him with MS? Would they suggest he was previously misdiagnosed, suggest he was in a period of remission or declare he was actually cured.


                      There are commercials currently running about repairing water/fire damage to the point "like it never even happened." To me that's the standard for a MS cure. That a neurologist would find no evidence of the disease as if it never even happened. It's not that the patient doesn't believe there is no further progression, but that there is no evidence of the disease, old damage is repaired, the body has been returned to a healthy state.



                      If I was George Goss my statement might not suggest cure, but be more akin to this:
                      "I was diagnosed with MS and it was wrecking my life. I underwent a procedure known as 'stem cell' treatment and it improved my life. The procedure apparently forced a period of remission where may of my old symptoms improved and I have not noticed any new disease progression. I still have some leftover problems from the disease, but overall it's been nothing short of a miracle for me. I hope other patients will be able to get stem cell procedure and get benefits similar to my own!"


                      I remain optimistic about stem cell procedures and their potential future impact for MS, but I am also a realist. If Drs. Burt or Sadiq had a highly successful, highly repeatable treatment they would be awarded the Nobel Peace Prize. Why would any of us take another pill, injection or infusion? It would be cheaper to pay even $500k for a one-time treatment than to pay $60k/year for the next 10 years. We could all get off of disability and return to the workforce and again become contributing members to society. I still do not see stem cell treatments ready for prime time.

                      Comment


                        #12
                        I just received an email from them today, it said, " We have recently announced the other center participating in the trial will be the Judith Jaffe MS Center at Weill Cornell Medical Center in New York. Our priority still remains to raise the funding needed to initiate Phase II. Once that is secured, enrollment can begin. Please continue to follow our progress as we post it on our website and Facebook page"
                        hunterd/HuntOP/Dave
                        volunteer
                        MS World
                        hunterd@msworld.org
                        PPMS DX 2001

                        "ADAPT AND OVERCOME" - MY COUSIN

                        Comment


                          #13
                          Stem cell centers

                          Has anyone had an experience with a non-FDA approved stem cell center? Do to the positive report from the New York study, I am wondering if "going rogue" has had any personal success for patients with ppms.

                          The cost is incredibly expensive but the question is, is it worth the money?

                          Comment


                            #14
                            Aarcyn, happy to hear from you. I am glad you found this thread, that I started 2 years ago!
                            The stem cell repair story has been in the works for many years and in several countries. IMO, non FDA approved treatments, performed in foreign countries other than the U.S., could be effective and safe, but I wouldn't spend a dime to try that route. Dr. Burt and/or Dr. Sadiq will hit the bullseye someday! Good luck

                            Comment


                              #15
                              Thanks for the warm greeting. I am not talking about any outside the United States centers for stem cell therapy. The one I am looking at is in La Jolla, California. it is called stemedix.

                              Comment

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