SMA News Forums Forums Treatments and Research Evrysdi (risdiplam) Returning to a Neurologist

  • Returning to a Neurologist

    Posted by brianna-albers on August 14, 2020 at 7:00 am

    With the approval of risdiplam (I still don’t know how to spell the treatment’s new name), I’ve decided to go back to a neurologist. I need MD approval prior to starting risdiplam, but I literally haven’t been to a neurologist in years, so I figure it’s time.

    I’m waiting to hear back from the muscular dystrophy clinic at the University of Minnesota, but in the meantime, any suggestions for what to ask after years of not seeing a neurologist?

    derek-markulin replied 3 years, 10 months ago 3 Members · 2 Replies
  • 2 Replies
  • deann-r

    Member
    August 14, 2020 at 8:32 am

    When I started Spinraza that was the first time I had seen one since I was a kid. If you’re going to the U of M I’m assuming they’d have you see Dr. Karachunski. He’s pretty straightforward no nonsense kind of guy. The first appointment was a long day because they did all the baseline labs, pulmonary function tests, physical therapy assessment and just all the newbie stuff. The actual meeting with the neurologist was pretty brief.  Tbh I don’t find a neurologist very helpful, but maybe I’m missing something.

  • derek-markulin

    Member
    August 14, 2020 at 12:37 pm

    I see a neurologist once a year at the MDA clinic to pretty much spend all day, where I meet with the counselors, occupational therapist, physical therapist, geneticist and neurologist along with student doctors who are always observing my exam by the neurologist. I also have to see the neurologist regarding my spinraza injections when I was getting them and will now have to see him again regarding the Evrysdi medication once things get figured out with insurance.

    Yes I would say the exam by the neurologist is usually brief and confirms what you and they already know but they also want to see if you’ve regressed since the last time or what changes you may have had since your last visit and if you have any additional equipment needs.

    I would ask how to get started on the new medication as soon as possible which is what I will be asking. I know when Spinraza first got approved it took me one year to finally get my first dose so I am hoping being that this is a much less invasive medication to administer that things will move faster.

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