SMA News Forums Forums Our Community Adults ​With​ ​SMA Columnist Writes About Neurologist Appointment

  • deann-r

    October 13, 2020 at 11:23 am

    Sounds eerily similar to my saga when I pursued Spinraza. I had an appointment with a neurologist for the first time in years only to find out the day before the appointment they wouldn’t be able to prescribe or administer it. Wasted at least a month waiting for that appointment and another few months waiting for my appointment when I did find a clinic familiar with SMA willing to do Spinraza. When I got to the appropriate neurologist I too needed genetic testing. I’m not sure why they’re sending you to a genetic specialist. The neurologist simply ordered a blood draw and we had results within 2 weeks confirming what we already knew.

    May I ask where you go? I see Dr. Karachunski at the U of M. So far I’ve been relatively happy with them.

  • brianna-albers

    October 13, 2020 at 4:17 pm

    Omg that’s SO frustrating! I saw Dr. Alan (Allan, maybe? not sure), who referred me to the pediatric side of the clinic at UMN. I’m waiting to hear back. The genetic specialist found my paperwork but I’m waiting on a callback from her as well.

Log in to reply.