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    I did it

    Eight weeks ago I had a double stem cell transplant. They liposuctioned fat from two areas, separated the stem cells and gave them back to me by IV. I wanted to try it because I have bad primary progressive. I can't use my legs or my right arm and my right hand has been curled up as a fist for 6 or7 years. My left hand is starting to get worse. My upper body balance is bad. My speech and swallowing is bad. I figured what have I got to lose. After 8 weeks, all I have seen is my right hand is no longer curled and I can move my thumb and first finger and everybody says my speech is better. It has only been 8 weeks. I have read that it can take many weeks or months. If it is only stops the progression that would be great. I am glad I did this.

    #2
    great news!!! i hope you continue to regain lost abilities! keep us posted.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

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      #3
      DavidT,
      That sounds like great news. I am hoping that you continue to improve. Where did you receive your stem cell treatment?

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        #4
        That's great.......I hope you continue to improve!!
        dx 2002 rebif 2002-2013 Tecfidera 2013

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          #5
          I had it done at the Kansas Regenerative Medical Center in Manhattan, Kansas. That is only 5 hours from where I live. I found them on the list on the Cell Surgery Network. They list places all over The United States.

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            #6
            Wow David!

            Congratulations and thank you for trailblazing in this area. I hope the procedure works well for you and trust it will.

            I'm probably not the only one who is wondering about the cost, if you don't mind me asking.

            Also, was your insurance any help with the cost?

            It seems reasonable that if certain types of stem cell procedures are successful the insurance companies would prefer those procedures over $50k or $60k per year meds.

            Thank you again for your willingness to participate in this newly developing area. And thank you for sharing about your experience; it means a great deal to a bunch of us, David.

            Best

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              #7
              Wow!

              I didn't see this thread until right now! I hope you come back to tell us more, David. This seems to me to be the best hope for most if not all of us to beat this horrible disease. Please let us know how it's going for you. and good luck, we're all rooting for you!
              PPMS
              Dx 07/13

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                #8
                So DavidT,
                As you can see from the replies, many of us on this board are actively seeking some 'curative' treatment. Keep posting. I'm hooked on your story. I wish you well. Good luck

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                  #9
                  I, too, am hooked on your story. Manhattan, KS is not a long drive for us at all.

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                    #10
                    It has only been 10 weeks now. I have not seen any more improvement yet but they say it can take weeks or months. So I still have faith. It has to grow new nerves to replace the dead ones. I will be happy if it just stops the progression. Health insurance doesn't cover it because it is not FDA approved but I did not want to wait another 10 years or more. It did cost me $8900. I had found cheaper, but they were farther away. So not really any cheaper when you added all the extra expenses up. Just check the Cell Surgery Network for more information and to find somewhere close.

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                      #11
                      DavidT,
                      I want to/ need to know more of your story. I have read your posts but you didn't say where you had the procedure. I looked for the Cell Surgery Network and found the Cell Surgical Network. Is it the same thing ? I know I am nit-picking, but there are many sound alike names on the web.
                      If I can get a straight story, without holes, I am much more likely to 'buy in'. You did say that your costs were around $8900. Is that number all inclusive of treatment and room and board ? Keep us posted !

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                        #12
                        Is is the Cell Surgical Network. That price includes everything. Is is a outpatient procedure. Is only takes 3 to 4 hours.

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                          #13
                          Thanks for for the reply. Keep us posted. Happy Thanksgiving

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                            #14
                            It has now been three months. I'm not seeing any more improvements yet. I called the doctor and he said to give it six months because it is having to grow new nerves because my current nerves are dead. I figured that since I have had the same problems for years. He said to call him back then to see if I might need a second treatment or if I have had improvements. I still have faith. I knew it would not be an overnight fix.

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                              #15
                              David - Thank you for the update. Three months isn't really that long -- I hope the next three show additional improvements!

                              Keep the faith and best wishes for the Holidays.

                              Bree

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