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    #16
    Carole, thank you for keeping us updated. Just know that we are all rooting and hoping for great success for you. You will be in my thoughts tomorrow as you are getting the stem cells infused.

    Did they give you your pre EDSS score. It is nice to have a baseline for your progress.

    Stay strong and let those stem cells do their work!

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      #17
      back from Chicago

      Well, I made it through the chemo and transplant and am so thrilled to be back home with my family :-) Chemo was a bit rough, and the steroids have left me feeling a bit stiff in the legs (steroids always exacerbates my symptoms) but, overall, I feel ok. I'm taking it easy, and will pretty much stay at home for the next few weeks, wash my hands religiously and avoid crowds/sick people for the next 6 months! Dr. Burt's team was absolutely fantastic and I remain optimistic that this reboot will halt the progression of my MS. Guess I'll have a better idea when I go back to Chicago in 6 months for my follow up MRI and appointments!

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        #18
        Best wishes to you Carole K!

        I hope the treatment will be very successful for you in slowing down the progression.
        Nikki

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          #19
          Congrats and best wishes to you, CaroleK.

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            #20
            CaroleK - Just stumbled onto this post and now I'm wondering how you're doing a month out? God bless you!

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              #21
              hi MomtoMiracle

              I'm actually doing pretty well! It is early in the game, I know, but I have definitely seem some improvements. My fatigue has decreased (I don't even need a nap in the day) and my saddle anesthesia (numbness around my middle) has also improved noticeably. I still have numbness, some spasticity in my legs but I am back up to walking 2 miles a day at a pretty decent pace (about 15 minutes per mile). I've been told recovery is a roller coaster so I don't want to get too excited about these improvements, but I'll take what I can get

              I still have to keep away from crowds for another 5 months, be vigilant about germs and keep clear of sick people. For me, HSCT was the best option since I was failing on DMDs. I don't regret having done it and finally have some hope for my future

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                #22
                That is awesome to hear, CaroleK. So happy for you!

                I am in the researching process...

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                  #23
                  3 month update

                  It has been three months as of today since I received my new stem cells. Just to be clear on this, while it is called Hematopoietic Stem Cell Transplant, the backbone of the treatment is the chemotherapy that precedes getting the new stem cells infused. There are a lot of bogus 'stem cell' centers out there that are apt to discourage and mislead a lot of people seeking treatment. The chemo is essential for halting the progression of MS.

                  Overall, I feel good. My hair is finally growing in, my energy level is very good and I have noticed improvements in my strength and balance (yoga is helping with this too). I finish up with the course of prescribed antibiotics and antifungals this week, which is also nice. I will remain on antiviral medicine for a full year. It is so nice not to have to take any MS medicines.

                  I have no regrets having undergone the transplant, and I hope the reports that eventually go to the FDA support HSCT's efficacy. I'm in Phase III of the trial and, once this is finished, (Dr. Burt has to follow us for 5 years post transplant) it will go to the FDA for approval as a treatment.

                  My legs feel strong but a bit stiff, especially when I am inactive (upon waking). My saddle anesthesia has markedly improved. I head back to Chicago in March for another MRI and an evaluation with the neurologist and Dr. Burt. Hopefully, the news will be good.

                  I'll post again when I return from Chicago.

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                    #24
                    Thanks CaroleK. Your posts are posts encouraging. I hope (and pray) that you will continue to see improvements. Good luck

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                      #25
                      Carole, thank you for your postings! I have been following Dr. Burt's study and am inches away from applying. I have many questions. I see that you are also in MA. Did you go alone...how long were you actually there...? Do you have a blog?

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                        #26
                        This is tremendously encouraging! Hope to hear more good news after your next check up!

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                          #27
                          There is nothing (re: MS treatment) as encouraging as your posts. I continue to pray for your recovery. When will we ,MSer's, get treatments that stop MS and put the end to pills and shots that do NOT STOP MS ?
                          I would love to hear from other MSer's that are as frustrated as I am. MS sucks and the industry that has prospered from it sucks, too.
                          That's my rant !

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                            #28
                            I hear you, Jerry. MS is a very profitable disease for Big Pharma, that's for sure. I'm doing well now almost four months out. Booked for my six month follow up on St. Party's Day. Sure hoping the proverbial luck of the Irish will be with me and that I'll have no new or enhancing lesions!

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                              #29
                              From your lips to Gods ears, CaroleK !

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                                #30
                                6 month update

                                Hello again! I just returned yesterday from Chicago for my 6 month follow up. MRIs and bloodwork on Tuesday and, yesterday, I met with the neurologist and Dr. Burt. Dr. Burt gave me the good news: No new lesions. No enhancing lesions. Better yet, 'some of the (pre-existing) lesions are slightly decreased in size when compared to 7/7/14 (MRI).' So, overall, very good news.

                                I have been DMD free since June of last year, which is also nice. I do take acyclovir daily and will until September but this is only because it's highly recommended after chemo (it is an anti-viral med). As I mentioned before, I don't use the word 'cure' to describe HSCT because I do have residual damage that may never resolve (mostly numbness and spasticity in my legs, more pronounced on the right side, and some lingering, though definitely improved, saddle anesthesia). However, I remain very hopeful that this procedure has halted the progression of the disease! I head back to Chicago in September for my one year follow up.

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