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Just Been Referred by my UK Neuro for AHSCT at Kings College Hospital London

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    Just Been Referred by my UK Neuro for AHSCT at Kings College Hospital London

    Hi,
    Having failed every drug I've tried and had 14 years of an MS drug nightmare, my Neuro has now done an NHS referral to Kings College Hospital London to start the assessment for my suitability for their HSCT trial.
    I was dx RRMS in 1994, 3 years after first relapse in 1991 when in was 17.
    I did 8 years on no drugs as none were available and I had a 7 year remission. Then Copaxone wasn't strong enough, Avonex bombed my WCC, 3 times showing I can't tolerate interon, Tysabri-allergic, Copaxone (again) as MS became highly active RRMS 2012 and there were no other drugs here in U.K. Then I got a freak random case of Necrotising Fasciitis from an injection site (million to one) so more more needles. Then Tecfidera, Lymphocytes 0.5 after 5 months -,never recovered, stopped Dec 2016.

    Been waiting all this year for Lemtrada, but I'm one of the lucky souls who's lymphocytes rebound slowly (still only 0.8) so can't have it.
    There are many many hoops and jumps to get through before I know for sure if I am definitely getting HSCT, but if I do, I will share info here with everyone x

    #2
    Good luck!
    Kimba

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

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      #3
      I hope you get in and it turns out well for you.
      God Bless Us All

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        #4
        Thank You :-)

        If I'm lucky enough to get the treatment, I'm hoping to be able to share detailed and accurate info here to assist others x

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          #5
          Hi MrsChip, I have been following the HSCT developments for many years. I have never read anything negative about the patients cutcomes, other than the effects of high dose chemo used in the 'ablation' portion of the treatment. I wish you the best of luck with the treatment . Keep up the fight! Good luck !

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            #6
            MrsChip, you have been thru a drug nightmare.
            Now it's your turn to shine
            Best of luck and all my good wishes

            Linda
            Linda

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              #7
              Good luck to you, MrsChip Keep us informed throughout the process!
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

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