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    TISCH MS RESEARCH CENTER

    TISCH MS RESEARCH CENTER In New York has been given approval to start a phase 1 trial using mesenchymal stem cell-derived neural progenitors to repair the damage wreaked by MS.

    Anyone know the best way to start the process of possibly getting approved to join this trial?
    I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

    Bill Hicks

    #2
    Hey durgastiger,
    I posted about this a week or so ago. i sent an email to them inquiring about who, what, and when. They replied that the subjects for this trial will be taken from the list of patients on their client list. The practice at their facility is called IMSMP International Multiple Sclerosis Management Practice. I gave it a try. Maybe you'll have a better shot if you inquire. I can tell you that the method that will used is that the MSC's will be injected into the spinal fluid via an LP. I could be wrong as I am not a doctor but that is what I understand 'intrathecal' to mean. Good luck

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      #3
      seems like odd research, repairing something that can be damaged again? They need to stop the disease first then repair.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #4
        From what I've read on-line, MSC's are a type of stem cell that can figure out where to go to make repairs in the body. It also seems that MSC's can replace the 'broken' stuff in the CNS and make the repairs needed to 'fix' the MS symptoms. So if one gets the stem cells, and the MS symptoms are 'fixed', if there are more symptoms, one needs to get the stem cells re-infused.

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          #5
          sounds promising. I sent in my stuff to Dr. Burt, but reading what people go through with treatment it scares me a lot.
          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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            #6
            Katje,
            It is perfectly reasonable that you feel 'scared' of having the HSCT procedure at Northwestern. Dr. Burt's clinic is one of the most experienced in the world doing this procedure. They want your condition to improve almost as much as you want to see improvement. I hope and pray for your success. Good luck

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              #7
              Jerry, you're really for this dr burt treatment I noticed.

              For me I have 2 young kids, a busy schedule and not handicapped. I also have extremely labile blood pressure thats hard to control that could seriously complicate things.


              You seem to be under the impression you get zapped with chemo, get stem cells and easy peasy. It's not easy, read the blogs of people who have done it. Many people have experienced serious complications and there was a study out where people who have this end up with a shorter life span.
              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                #8
                Yes Katje,
                I am a believer in Dr. Burt's work. I will admit that I don't know all there is to know. And if I had a chance of getting the stem cell therapy, I would ask all of the questions that I could. The first question I would ask is ..'Has any patient received the HSCT treatment at Northwestern and not improve in all of the measures of disability?'
                I am not very happy with what is left of my abilities, since I was 'robbed' by MS. I am going to continue to 'search' for any improvements that I can get. There is going to be a 'fix' for this disease, someday. I want to be here when it happens. I hope you are, too. Good luck

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                  #9
                  Katje,
                  Yes I am a huige fan of researchers like Dr. Burt. but I do understand that it is a 'scary' proposition to undergo Dr. Burt's treatment procedure. I also realize that some other clinics are doing non-myeloablative procedures. These differences can turn out to be the 'gold standard'. Who knows ? I just hope this research leads to an end to MS. Good luck

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                    #10
                    I am a new patient at the Tisch MSRC in NY. It's an amazing facility but the stem cell trials are not made available to everybody. It is one of the finest facilities I have been too but I'm still learning.

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                      #11
                      Daisy Dead Petals,
                      I am glad to hear of your new patient status with Tisch in NY. Maybe you can keep us posted on the Stem Cell trial that is ongoing there. Are you PPMS or SPMS, by chance ? Are you enrolled in the trial ?

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                        #12
                        Hi. I was seen as a new patient at Tisch last month. I have PPMS, 58 years old, on Copaxone and Ampyra, walk with cane.

                        The stem cell study is full, based on what I heard at their conference and then from the doctor I saw there. Wonderful clinic with great care. They recommended intra-thecal methotrexate (small amount of this chemo injected in spine.) Has anyone had this treatment?

                        Cheers.

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                          #13
                          Hi Jerry, No I have not been invited into the trial for stem cells. I went to the seminar they held in NYC and filled out the information card they gave out afterwards and they called me to invite me into the clinic for an evaluation. The doctor spend a few hours with me going over my history and scans and just recently took some spinal fluid from me.

                          I go back next month to hear his treatment plan for me. I am SPMS now.

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                            #14
                            Daisy Dead Petals,
                            I as curious to hear of your experiences and advice from the Tisch docs. Keep on posting. Good luck

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