4 Years Post HSCT for PPMS Update

Today, September 4, 2017, is my four year HSCT stem cell Birthday.  Honestly, nothing new to report, still holding on progression free.  If you read my 1, 2, 3 year post updates, you can see how I’m doing. Not complaining at all, no progression is what I continue to pray for.

I continue to workout 5-6 days a week. Either walking, lifting weights, or taking a HIIT class. I’ve moved since my last update and no longer have access to the amazing classes, and people, I had while living in Dayton, OH, but I’m trying to find a new groove.  I have walked further, 6.75 miles is my new record, but I found that to be too far for me at this point, it took me a week to recover. So I keep my long walks between 5-6 miles.

Thank you again for all of those that have cheered me on over the past several years.

Life is good!

VW

7 Comments (+add yours?)

  1. Roger Wilson
    Sep 08, 2017 @ 00:43:52

    Fantastic!!! So impressed by your amazing progress!!!
    Love from R&D in Amarillo

    Reply

  2. luis
    Nov 17, 2017 @ 00:25:26

    Great inspiration i am Luis i am in India and doing hsct i find lots of strengh talking to you ….Tanks Luis

    Reply

  3. Pepi
    Nov 18, 2017 @ 09:20:28

    Hello,
    I am Pepi and I also have PPMS. I would like to know more about your situation, because I’ve asked for the treatment in Spain but the doctors don’t think it will be appropiate for me. These are some questions I would like you to answer me:
    How old are you?
    Which is your edss level?
    Where did you have the treatment?

    Reply

  4. Isobel
    Dec 08, 2017 @ 11:13:44

    Hi, My name is Isobel, I’m 22 and I think I’m about to be diagnosed with PPMS. I’m hugely concerned and feel like my life is falling apart. Would you mind telling me more about HSCT?

    Reply

    • kickinms
      Dec 09, 2017 @ 09:21:00

      Hi Isobel, It would be pretty rare for someone as young as you to be diagnosed with PPMS, it usually hits in the 40’s. RRMS can strike people of your age. I would recommend joining the main HSCT Facebook group, here’s the link. https://www.facebook.com/search/top/?q=hematopioetic%20stem%20cell%20transplant%20-%20ms%20%26%20autoimmune%20diseases

      HSCT is not a stem cell treatment, but a chemo treatment with your own stem cells used to help you recover faster from the chemo. It’s in clinical trail at Northwestern University, in Chicago. Dr. Richard Burt is the doctor performing HSCT there. HSCT is also done around the world for MS and other autoimmune diseases. I had mine in Moscow, Russia, they are one of the facilities that will treat PPMS. There are also two places in Mexico, Puebla and Monterrey.

      Reply

      • Isobel Kelly Davies
        Dec 10, 2017 @ 19:36:11

        Hi, thank you!

        I know it’s rare but my neurologist says I have All the symptoms. He’s just waiting on the proof 😦 my right arm and leg are heavy and weak and I have poor balance. Came out of nowhere. I hope HSCT works for me

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