Announcement

Collapse
No announcement yet.

Blogs/Videos of fellow HALT-MSers

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Blogs/Videos of fellow HALT-MSers

    There are a total of 25 people enrolled in HALT-MS, which was performed at one of three locations in the US: Seattle (Fred Hutchinson), Houston (MD Anderson), and Columbus, OH (Ohio State). A number of participants have blogs and/or videos of their stem cell transplant experience. Here are a few that I have found. I tried to link to the earliest blog post related to HALT-MS so you can read about it chronologically.

    Jaime (Seattle) put together a blog I read in detail before my SCT until I got to the part about her 106-degree temperature and her heart temporarily stopping. I've since gone back and read about the parts I missed (yikes!).
    I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).
    http://mymsjournal.blogspot.com/2009/02/halt-ms.html

    Gabby (Houston) helped me out in a huge way to prepare for the treatment specifically in Houston. She was one of the first HALT-MSers. Her blog is of life and not just the SCT, so you'll have to work a bit harder to read only about HALT-MS.
    I'm a wife, mom, sister, daughter, Mormon, photographer, conservative, perfectionist, procrastinator, reader, artist, and seeker of all good things. I have a smart husband, and 3 rascally boys. I was diagnosed with Multiple Sclerosis in October of 2005. Most people with MS have the recurring-remitting kind which comes and goes and generally has quite a slow progression. There are also several great medications which minimize flareups and slow the progress of the disease. However, my MS progressed pretty rapidly and by October of 2007 my neurologist told me I likely had a much more severe form of MS called progressive relapsing MS. There is no treatment and no cure for this type. I was accepted into a clinical study and underwent an autologous bone marrow transplant in July of 2008. MS is an autoimmune disease, so by giving me a brand-new immune system the doctors hope my MS will stop progressing. Only time will tell if the procedure worked. Some days I am optimistic, other days I feel scared and discouraged. But amidst it all I try to live my life, love my husband and my children, and rejoice that I'm here to experience it all!
    http://gabrielleturner.blogspot.com/...essive-ms.html

    Mike (Seattle) is a good guy and an avid golfer who made the leap to catch the disease early.
    I had a stem-cell transplant for multiple sclerosis in December 2009. This blog was set-up for tracking my family and my 'post transplant' progress. I know there aren't many of us out there (who have had this procedure done), but I'd be happy to chat with anyone who is interested in knowing more about this treatment for MS. Thanks for reading.
    http://mikeandcasey2009.blogspot.com...goi-think.html

    Vita (Seattle) was one of the last HALT-MSers to get a transplant and she has started a little blog.
    http://web.me.com/littlev/vitas_worl...e/Welcome.html

    Keelan (Seattle) had his transplant done a couple years ago and put together a some YouTube videos of his trials and tribulations. But he's gone back to school and taken down the vids to focus on school.

    George (Germany) is not a HALT-MSer (he didn't qualify since he has SPMS) but went to Germany to have the protocol followed to a T. His opinionated blog is here:
    http://themscure.blogspot.com/2009/1...to-voyage.html
    Dave Bexfield
    ActiveMSers

  • #2
    Hey Dave, I had no idea that they were doing it in Houston also. Interesting. And my first assumption was correct, 25 total. Not too many of us out there. Thanks for hooking up with me. It's funny because the RN that ran the study in Seattle actually hooked Mike and I up together about a month or two ago; good guy. And I met George by noticing he had put a link to my video on his blog. I'd say "small world" but if there is only 25 of us it's really no surprise we would run into each other. Sounds like it hit you hard and fast. Glad you were able to squeeze through.

    Keelan

    Comment


    • #3
      Wendy

      Hi Dave,

      I had the HALT procedure in Houston in January of this year. I am glad you have this site and I hope we can all connect here. Although I wish none of us had to deal with MS and all of the effects that come with it, I am glad to find a place to hook up with others who can identify what it is like to go through this. (Meaning both the MS and HALT)



      Wendy
      Last edited by Wendy R; 07-30-2010, 06:34 PM. Reason: correction made

      Comment


      • #4
        Wendy, it's so nice to hear from you! You must be the mysterious MD Anderson patient everyone was talking about (in a good way). Shoot me an e-mail when you get the chance, dave@activemsers.org. Chat with you soon,
        Dave Bexfield
        ActiveMSers

        Comment

        Working...
        X