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Dr. Burt called me and wants me to come to Chicago!

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    Dr. Burt called me and wants me to come to Chicago!

    I received a call early this morning from Dr. Burt. I am excited and scared. Has anyone here had this procedure, because I am a littler nervous about the 1-2 percent fatality rate.

    I have recovered from my relapse, it's easy to put this off, but MS doesn't go away and I am afraid I wil miss an opportunity of I don't go.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    I think you won the lotto. I know about the 1-2% mortality rate. Dr. Burt has done this type of stem cell replacement since around 1990. I have been watching and waiting for a long time to see how this HSCT was improving over the years of trials.
    I wish you the best of luck. Many prayers from me to you. Think of positive outcomes and keep them in your mind for the whole procedure. Good luck

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      #3
      Congratulations Katje!!

      Congratulations and best of luck on your journey...keep us posted!
      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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        #4
        I'm in a similar situation. Best of luck and prayers for the best outcome for you.

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          #5
          Torn,
          Are you also on Dr. Burt's short list. If you are, I hope you make the cut. I wish you the best. Good luck

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            #6
            I don't have to be on his short list to make the cut.
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #7
              No, I am working with a doctor in Amarillo Texas. Anyone else in this study?

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                #8
                Prayers and thoughts for you both

                Katje and Torn,

                You are both in my thoughts and prayers. May God's hands be on your Dr and on you both.

                May your journey be full of love and support. You know you have that here at MSWorld. We are here for you both anytime, night and day.

                Please let us know how it goes.

                Much love and hugs. ((((Katje)))) & ((((Torn))))
                STR

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                  #9
                  Originally posted by Torn View Post
                  No, I am working with a doctor in Amarillo Texas. Anyone else in this study?

                  I read about it. I think your EDSS has to be over 3.0 and PPMS?
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                    #10
                    Over three but not ppms. Under 5.5 also.

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                      #11
                      Torn

                      I am also talking to the folks in Amarillo.
                      Melissa (dx. 3/22/2011)

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                        #12
                        Hi Katje - my son just returned from seeing Dr. Burt about 1 month ago. He has been accepted into the study although we are currently fighting for insurance. We have been denied after 3 appeals. We are not going to quit. Dr. Burt is awesome and I think you should take comfort in going to Chicago . . . good luck.

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                          #13
                          I am happy to hear that your son will be treated at Northwestern. Doesn't your son use this site ? His personal story would be f interest to others, here. Please stay in touch with us. I know I am really intersted in how a patient does with HSCT performed at Northwestern and other clinics.
                          I was emailed by Dr. Burt's people that SCT doesn't work on PPMS, and that's the form of MS hat I have. I hope the HSCT does help your son. Good luck

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                            #14
                            I met some people today who had this procedure. I was on the fence about having it, but now we all agreed it would be in my best interest before it's too late. Proceeding with paperwork and setting up preliminary testing this Tuesday.

                            I am scared but excited to get rid of this disease and feeling better again.
                            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                              #15
                              Katje,
                              I am very happy to hear of your decision. I hope that your life is returned to your 'pre-MS' condition. Please continue to post with updates. This could be the decade that MS is conquered. And you could be one of the pioneers. Good luck

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