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    PPMS and HSCT

    On the HSCT message board tonight I saw a woman who had HSCT done and now she is running and jumping. So apparently it does benefit those with a different form of the disease. I do not know where she had it done but it has helped her from wheelchair bound to running and jumping.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    That sounds really promising!!!

    I progressed pretty fast even for PPMS. Zero to (permanent) EDSS 6.0 in 2-3 years of first symptoms. Realistically, I expect to need a scooter or chair within a year.

    What is the name of the board?

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      #3
      it's a HSCT forum on FB. George Goss is part of the group.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #4
        Thanks, I'll go take a look.

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          #5
          I spoke to someone who is involved with Northwestern U and Dr. Burt about this subject. I was told that Dr. Burt felt his Stem Cell protocol wasn't effective on PPMS patients. For that reason, Dr. Burt's trials always 'exclude' progressive forms of MS.
          I am also a PPMSer and I would like to know about the possibility of getting stem cell treatment. If there has been success with this procedure, why hasn't there been some 'news' about it ?

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            #6
            I dont know, I only saw her post in a forum. You're right Dr. Burt won't treat SPMS or PPMS. I have to go in thursday to for am MRI to show continued inflammation and new lesions. He said he could help me. It made me feel good however he also said it's still a clinical trial and no proof that it can help any of us. Only time will tell. He said there is a risk. So he has to be choose the right candidates. I been on his list for a year now and yesterday he just moved me up. he said there is a small window for treatment. One must show inflammation for over a year with new lesions. So far I fit into his category. But I don't agree how strict he is with his guidelines because I feel they benefit him more than the patients. I think this does work on people with other forms of the disease, but they are forced to go out of the country.
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #7
              Katje, Glad to hear you're in the process of getting into this trial. I was denied, but I do think stem cells are the answer to all forms of the disease.

              Keep us posted! Good Luck!
              Opiegirl, Dx 1991
              Have never used DMD's.

              LDN 9/2011-9/2012 & just started again 6/14
              Estriol 9/12-present
              Still Hopeful.

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                #8
                I hear you, Katje. Dr. Burt is in an 'elite' type of researcher in a very 'special' situation. So he wants to be very careful in picking his patients and keep his numbers 'up'. Can't blame him.

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                  #9
                  I am so scared and it wil disrupt my family taking them out to chicago for 2 months. Fortunatly my husband can work out of Chicago, but that doesnt solve the issue with my little girls. Who will watch them.

                  I have a lot of anxiety. They said they can keep me on anti anxiety meds the whole time if need be.

                  I am afraid of the MS but a little more afraid of this procedure. I just dont want to die.
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                    #10
                    Wishing you lots of luck.

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                      #11

                      I applaud you for taking the initiative! I wish you lots of luck and hope you let us know about the treatment as you go through it. We are pulling for you!

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