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May 5th and I am off to Chicago

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    May 5th and I am off to Chicago

    Well it finally happened, I have my date scheduled. In the meantime I am supposed to have all my dental work done and a clean bill of health from my dentist. Shopping for new gowns, robes and slippers, a wig and tons of hats.

    I never been to Chicago before so I am excited to do some sight seeing whilst there and hitting some of the hot spots before I go in for the actual chemo and I have no hair.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    Godspeed, Katje. I will keep you in my prayers. I am sure that you will be in good hands. I have never been to Chicago, either. I hope that you will keep us posted.
    Good luck

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      #3
      Wishing you the best!!! Keep us posted
      dx 2002 rebif 2002-2013 Tecfidera 2013

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        #4
        Best of luck, Katje! Hope all goes well Keep us posted!

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          #5
          Good Luck! I hope everything is successful and please let us know how you are doing.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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            #6
            Good Luck! I hope your MS progression is halted and that you see improvements.

            All the best. We will all be thinking of you.

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              #7
              I am excited! Dr Burt was looking at my MRI's last night. I have to see a neuro at another hospital in Chicago for some reason.
              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                #8
                Good luck Katje!! Please keep us posted. Sending prayers and good wishes to you
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

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                  #9
                  Does anyone know if Katje went through with this?

                  If so, I'm hoping she is doing well and comes back here to share her experience with us.
                  Meet me in a land of hope and dreams. -Bruce Springsteen

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                    #10
                    It's great that you asked this, sewhappy. I have been wondering the same thing , myself. I just assumed that Katje was going through with the Dr. Burt stem cell treatment. I hope she is doing well and maybe we'll hear from her, sometime soon.

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                      #11
                      I just got back from Chicago. I had some tests and while there I had a relapse. Dr Burt was worried and called my neuro in Colorado. I am now back home recovering. Right now I am working with Kate and my insurance company to have this covered.

                      I guesstimate this fall.

                      I am thinking of building a website for HSCT. I currently run 3 successful websites so I have a really good staff to build it, run it and promote it for me. I think an internet site would be nicer vs a FB page. I use this one developer and it would run on a powerful platform. This way it reaches a bigger audience.

                      Very tired right now, will post more later.
                      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                        #12
                        Great to hear from you, Katje. I was wondering what was happening with you. I guess your recent relapse has put a 'monkey wrench' in your timeline. I hope that you will recover and get the full HSCT treatment from Dr. Burt. Good luck

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                          #13
                          Katje,

                          Thanks for updating us. So sorry to hear about your relapse . What awful timing.

                          I hope you recover both fully and quickly and will soon be able to continue on with HSCT.Hoping you start feeling better each day.
                          Kimba

                          “When you change the way you look at things, the things you look at change.” ― Max Planck

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                            #14
                            I was feeling funny the day I left for Chicago. I had an MRI at North western and the next day then I saw Dr Balabannov at Rush. He read my MRI and saw me dragging my leg a bit. He sent me to Dr Burt right away, so I was at Dr. Burts within 15 minutes and Dr. Burt asked me if I knew I was having a relapse. I actually felt OK for the most part, just a little weak in one leg.

                            They scared me a bit because they seemed alarmed by my MRI so I had a small panic attack and started crying. I feel fine for the most part. Anyway I am now back home on steroids and working with Kate for insurance and scheduling.


                            I wish I knew how to upload a pic of one of my MRI pix so you could see what you think if it's really bad or not. I have a copy of the disc. I also have the most recent report.



                            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                              #15
                              Katje,

                              Oh, too bad. You must have done a lot of mental prep for the procedure before you headed off to Chicago. For it to not happen at the last minute must have been very difficult. I can certainly understand your anxiety.

                              Hope you are feeling stronger each day.

                              The website sounds like a great idea, good luck with that as well!
                              Meet me in a land of hope and dreams. -Bruce Springsteen

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