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  • Seeing a Neurologist

    Posted by kevin-schaefer on June 27, 2018 at 5:00 pm

    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.

    deann-r replied 5 years, 11 months ago 4 Members · 8 Replies
  • 8 Replies
  • ryan-berhar-2

    Member
    June 28, 2018 at 5:19 pm

    I saw a neurologist about a year and a half ago in an attempt to get the Spinraza ball rolling. I also saw my pulmonologist a few months ago to discuss whether or not my lung capacity was good enough for a surgery. In general, I don’t need to see specialists on a regular basis. I see my normal doctor a few times a year, and he can handle most issues that arrise. I only see speacialists if something really, well, special, comes up. Lol. But if you are prone to a certain issue, seeing a specialist more regularly is probably prudent.

    • kevin-schaefer

      Member
      June 29, 2018 at 10:32 am

      Gotcha. Yeah do what works best for you. Just curious, about how often do you see your regular doctor? I usually just go in for an annual checkup with my regular doctor, but I see my pulmonologist every few months.

      • ryan-berhar-2

        Member
        June 29, 2018 at 5:32 pm

        Probably three or four times a year. I’m going July 3 actually.

  • deann-r

    Member
    July 1, 2018 at 2:44 pm

    Honestly I hadn’t seen a neurologist until I decided to pursue Spinraza. I’m not exactly a fan of doctoring, so go to as few as possible. I don’t even have a pulmonologist even though I should. At this point I don’t even know where I’d start.

    • ryan-berhar-2

      Member
      July 1, 2018 at 4:06 pm

      I agree DeAnn. Who wants to go to the doctor? Lol. But yeah of all the specialists to have, a pulmonologist is probably a good choice because of our weak respiratory systems. Even if you don’t see him or her regularly, the more continuity, the better, particularly in the event of a crisis. Back in 2013, I went into a coma and nearly died from metabolic acidosis. While that isn’t even a pulmonary issue, my pulmonologist was instrumental in my recovery, mostly because he was humble enough to listen and take the time to learn what I needed to stay alive and make a recovery. Point being that the more doctors you have in your corner, the better.

      • david-z

        Member
        July 13, 2018 at 9:04 am

        Ryan, if don’t mind my asking: how did you discover that you had metabolic acidosis, and what did you do to resolve it?

    • david-z

      Member
      July 13, 2018 at 9:02 am

      I’ve never found doctors to provide much insight for my SMA. I pretty much just cold-call a specialist when I need a prescription for something that I already determined I need. I’m unsure of how I’d find a neurologist or pulmonologist that are knowledgeable about SMA if/when I need to.

      • deann-r

        Member
        July 14, 2018 at 5:00 pm

        If you want to find a neurologist or specialist the MDA Association would probably be a good place to start.  They’d at least point you in the right direction.

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