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    Stem Cells

    hi, i have been reading a lot of information on stem cells....i have some questions.....1. has anyone ever do it? 2. how expensive is it 3. can it really help people who have MS? THANKS FOR THE COMMENTS

    #2
    digiulio,
    There is a Facebook community about Stem Cells for the treatment of MS. You have to know your way around the internet (which I don't ).
    There is a Facebook page titled Dr. Richard Burt which has posters that are giving information and seeking information about HSCT for MS. I am a novice at finding this info, so I hope I helped you a little.

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      #3
      stem cell transplant info

      Hi DiGuilio: I'm so happy to see the NMSS seriously addressing stem cell treatment by highlighting the treatment and interviewing Dr. Richard Burt this month. I'm actually undergoing the transplant with Dr. Burt at Northwestern Memorial Hospital in Chicago. It's intense (and, trust me, I'm nervous!) and consists of high dose chemo followed by stem cell transplant (my own stem cells which I grew in Chicago in late July and which are currently frozen, awaiting my return).

      I have aggressive RRMS and have failed three MS approved DMDs so this, really, is the best option for me. The results, so far, have been more than encouraging.

      Jerry is correct: there are two great stem cell forums on Facebook. One is called Hematopoietic Stem Cell Transplant - MS & Autoimmune Diseases and the other is called Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago. There is tons of info about the process and accounts from people who have gone through, or are going through the transplant.

      I head back to Chicago for the actual heavy duty chemo and transplant next week. I will post updates when I'm through.

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        #4
        Hi CaroleK,
        So happy to read your post. Again, I wish you the best of luck. I only wish I could meet with Dr. Burt, myself. But he doesn't treat PPMS patients. Good luck and god speed, Carole

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          #5
          Hi Jerry

          Jerry: I know you're not keen on Facebook, but there are several people on George Goss's page for HSCT (it's called Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases) that are SPMS and have undergone HSCT with success (George Goss being one of the most vocal). HSCT doesn't claim to reverse any disability already accrued but it has, for a majority of those undergoing it, stopped the progression of the disease.

          Of course the problem is funding it as, since it is not part of a clinical trial here in the US, most people with SPMS have to seek treatment overseas (Russia, Israel, Germany). I know it's a lot for people to consider and to deal with. Many people fundraise as the cheapest treatment is through Moscow and I believe that's close to 40K.

          I hope and pray that we see more trials here in the US sooner than later that tackle SPMS and even PPMS.

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            #6
            Thanks for your response, Carole. It would be a huge task and expense for me to seek treatment overseas. I appreciate your suggestions. I will keep hoping and praying for a 'cure', soon. I also pray for your successful treatment. Good luck

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