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Seeing a Neurologist
During this year’s Cure SMA conference, I spoke with a number of adults who said that they had gone years without seeing a neurologist. Prior to Spinraza, many adults with SMA didn’t see a real need for seeing a neurologist regularly. I myself went a while without seeing one, and it wasn’t until I found the one I have now that I started seeing him on a regular basis. That was in about 2011, and I see him at MDA clinic appointments and for my Spinraza treatments.
For you all, how often do you see your neurologist? And when you do go, what kind of things do you ask your neurologist? Things are much different now with Spinraza and other drugs in the pipeline, but I’m just curious as to what your neurologist appointments are like.
For me, my pulmonologist is still the doctor who I see the most. I have to stay on top of my respiratory issues, especially during the winter when it’s cold and flu season. As such, I see him every few months and it definitely helps me maintain my respiratory levels.
With my neurologist, we obviously spend a lot of our meetings talking about my Spinraza treatments and what kind of progress I’ve made. We also have discussed other drugs in the pipeline at different points. My neurologist is on the Cure SMA board, so he has some of the best insight into the research currently going on.
Whether or not you are on Spinraza, I do recommend seeing a neurologist. Finding the right one will help you find information about treatments, and it can just be good for your overall health. I know sometimes it can be a pain to add yet another doctor to your list, but I believe it’s a better time than ever before for people with SMA to see a neurologist.
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