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  • Intoduction

    Posted by mike-huddleston on February 27, 2018 at 6:03 pm

    I put this in my profile, but adding it here as well:
    My name is Mike Huddleston.  I’m 54 (exactly when and how that happened, I’m not sure!), married with no children, and still work full time as a Systems Analyst.  I live in Maryland, closer to Baltimore than DC.

    I was diagnosed with Type 3 via muscle biopsy back in 1979 at the age of 16, although I was symptomatic for several years prior to this.  I am the youngest of 5, and the next two older siblings also have SMA, although they were symptomatic at much younger ages.    I was ambulatory, at least by some definition, until 2015.   I have been approved for Spinraza and am working with Dr. Crawford at Hopkins.  I will be treated at an offsite facility due to some goofiness in budgeting, and they are currently finalizing those details.  I will be either his second or third adult Spinraza patient and when we spoke last week, he said hopes to start the loading doses in March.

    Looking forward to interacting with others here.

    kevin-schaefer replied 6 years ago 6 Members · 7 Replies
  • 7 Replies
  • alyssa-silva

    Member
    February 27, 2018 at 7:42 pm

    Best of luck on your Spinraza journey, Mike! Sending you well wishes.

  • kevin-schaefer

    Member
    February 27, 2018 at 8:01 pm

    Thanks for joining us here Mike! Echoing what Alyssa said, I wish you the best with Spinraza. It took getting around several loopholes for me as well, but I started treatments last November. It’s going well so far.

    I’d love to hear more about your life in general. We have multiple discussions going on here about living independently, working, etc. Looking forward to talking more with you.

  • julia-ayerbe

    Member
    March 14, 2018 at 6:28 am

    Hi Mike, very happy to hear from you! I am curious about your treatment with Spiranza, since I am SMA III too.

  • julie-richie

    Member
    March 21, 2018 at 10:16 am

    Hi, My name is Julie and this my first time to write anything on a Forum or whatever this is.  Please forgive and teach me if I’m breaking some sort of etiquette on here.   I am 51 years old and have Type III.  I work full-time and then some and am married and have two adult children.  It is assumed that my grandfather had SMA but he was never diagnosed.  I have no other family that has it.  I am ambulatory but mobility is declining.  Or was.  I am have had 3 of my loading doses.  I am already seeing improvements!  My stability while walking has improved and so has my speed.  I have experienced several of the side-effects of the Spinraza but it’s worth it to see the improvements so clearly.

    • deann-r

      Member
      March 21, 2018 at 10:47 am

      Welcome Julie!  This is the perfect place to start on the forums.  I always find the genetics of SMA fascinating as it didn’t show up in my history except there were a couple of infant deaths that raise my suspicion.  Glad to hear you’ve started Spinraza.  Please if you get a chance share your experiences in the Spinraza section of the forum.  I’m curious as to the side effects you’re referring to.  Perhaps others have experienced them as well and could help with solutions, or at least would make others aware of what to possibly expect.  Thanks!

    • kevin-schaefer

      Member
      March 21, 2018 at 12:58 pm

      Thanks for joining us Julie! Echoing what DeAnn said, this is a great place to connect with other people in the SMA community.

      Glad you’ve started Spinraza and that it sounds like it’s going well so far. I finished my loading doses in January, and my first maintenance dose is in May.

      Keep us updated and feel free to ask any questions you have.

      -Kevin

  • deann-r

    Member
    March 21, 2018 at 10:54 am

    Hey Mike!  Any closer to those Spinraza injections?  Just wondering how it was going.

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