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.