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I see my neurologist twice a year. I usually make the appointment after each visit for the next one because it’s not always easy to get an appointment in short notice. I can ask for prescriptions for PT or letters through the portal if I need something in between visits.
Ive never had to wait so long for any dr. appointment
In my city, my insurance company tells us where we can go for all treatments or the insurance company will not pay. We have access to 1 neurologist. We are forced to see a ARNP. With the complexity of Levoscoliosis with muscle atropy type 2 with Neurogenic atrophy, ARNPs are not educated enough to deal with all of the things that come with my diagnosis.
I went to the University of Iowa hospitals & clinics last week, their X-ray machines were working correctly. I was supposed to see the Neurologist at 1:30, he finally saw me at 3:30
Another Neurosugreon was with Dr. Lee (he does not speak English). I don't even remember the 2nd Neurologist's name. He asked me why I was there? To treat me, T1 to L5 would have to be opened. It would be a 12+ hour surgery, I would be in the ICU for approximately a month. I wasn't allowed to ask any of my prepared questions. He suggested that I go to Mayo clinic, that hospital is out of network for me.
I cried all the way home.
Wait times to see neurologists can vary significantly depending on location and the specific clinic. For many people with SMA, coordinating care through multidisciplinary clinics can actually help reduce overall wait times and make appointments more efficient.
These specialized clinics often schedule multiple specialists Show Full Answer
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