Happy Tuesday! My latest column is about the hot mess that was my neurologist appointment. Basically, they can’t find the results of my genetic test circa my diagnosis, so things are on hold until they find the paperwork. Sigh.
For those of you pursuing Evyrsdi, how long was the initial application process?
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.
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.
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