SMA News Forums Forums Treatments and Research Spinraza (nusinersen) It Takes a Village Getting Spinraza

  • kevin-schaefer

    Member
    December 7, 2018 at 2:22 pm

    Absolutely DeAnn. I think about all of the people who are just there on my injection days: my Biogen case manager, my Mom, my neurologist, his assistants and a radiologist. Not to mention I have a ton of family and friends who support me every step of the way. Thanks for sharing.

  • ryan-berhar-2

    Member
    December 7, 2018 at 9:06 pm

    The larger my team got, the more dysfunctional everything became. It literally got to the point where my neurologist asked me to ask the Biogen reps to back off, as apparently they were overstepping their bounds. There were like 15 different entities, none of whom were communicating with each other. It was one huge mess.

    • deann-r

      Member
      December 8, 2018 at 9:16 am

      I can see where that could be an issue Ryan.  Too many cooks in the kitchen.  That’s kind of why I opted not to get a Biogen rep.  Several people do and find them helpful, but I was working well with the clinic, so figured why rock the boat.  I’m kind of a minimalist when it comes to doctoring, so in this last year I’ve seen more specialists than since I was a kid.

      • ryan-berhar-2

        Member
        December 8, 2018 at 11:19 pm

        I’m with you there.

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