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    #16
    Trial

    Sorry JerryD - I was pretty unclear, sometimes it just makes so much sense in my head... I'll try to answer your questions better .
    I was approached by my neuro after having two to three relapses per year on both Rebif and the ONO trial (similar to Gilinya). the also offered Copaxone or another trial called Ocrelizumab. I chose to do the Alemtuzumab (or Campath) for some of the reasons I listed below.

    my Neuro is at a local MS clinic at a research hospital. he is pretty progressive but never makes me feel like I have to do something- rather that here is what they have to offer if I should chose to access it.

    Yes I did the first five day infusion the third week in January. So time will tell. My first check up was good and due to have my second blood test soon. So I'm really early in the study so don't have any idea how/if it will work for me.

    I have for the last five years had at least 2 relapses per year all involving my legs and mostly sensory based symptoms, pain and heaviness in my legs. The last one August 2012 took till Christmas to feel like I had regained (most) of what I had and able to walk without a cane. So based on my past I'm due for one soon but feel good so maybe it will continue

    Let me know if you have other questions and I'll 'attempt' to answer them.
    Cherry
    Mom to 5
    Dx July/09

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      #17
      Campath

      Cherrymom - the second year is not as bad as the first year and it's only 3days instead of 5. I have had no active lesions since. I think they stopped even after the first year dose.

      The second year I was able to stave off the riggers just by relaxing and my mom holding me. The first year I needed a quick dose of painkiller and that stopped the riggers instantly. I had a few 'visions' each time, but maybe that's just me. They didn't scare me.

      The nurse found out with me it was better to mix the campath with saline as it went into my vein. Things were much better then.

      All is well with me, this was the best choice ever. I have 100+ lesions and I'm working full-time, no other MS medicine has been needed with me since the Campath dose.

      I think some repair has happened with me, but perhaps need stem cells in the future. I hope the FDA approves Campath soon! Time is critical as new lesions form in MS people. I wish I could help more...
      -spacedive

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        #18
        Ty to Lemtrada

        MY NEURO JUST CAME BACK FROM AN INTERNATIONAL CONFERENCE IN FRANCE PERTAINING TO THE TYSABRI REBOUND EFFECT.

        HE SAYS THAT HIS PLAN FOR ME IS TO START LEMTRADA 60 DAYS AFTER COMING OFF TY AND THAT THEY BELIEVE THAT WILL PREVENT THE REBOUND EFFECT.

        HE SAID THIS IS EXPERIMENTAL AND THAT 30% OF PEOPLE RECEIVING LAMTRADA DEVELOPE THYROID DISEASE/GRAVES DISEASE BUT THAT'S A BETTER TRADE OFF THAN PML OR PERMENANT DISABILITY.

        HAS ANYONE EXPERIENCED THIS OR CAN SHARE THEIR EXPERIENCE.

        THANKS EVERYONE.

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