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    • #27530
      Alyssa Silva

      Yesterday marked Spinraza dose number 18 for me. Without diving too deep into my recent struggles, my body has been dealing with some extra health issues which were ultimately going to affect my injection yesterday. Long story short, I get really sick laying in a certain position now, the same and only position I can be in for the spinal taps because my body doesn’t move well.

      But my doctor was amazing. He has never given up on me which is something I’m so thankful for. Apparently, he had been studying images of my very curved spine for the last several days and discovered he could enter my spine at a different point and angle, ultimately speeding up the process and hopefully eliminating some of my discomforts. Together, we took a chance and it worked.

      Today, I am so relieved. I needed this dose more than ever to help my body fight whatever it is going through. But, man, was it a stressful day— not to mention the days leading up to it too.

      How do you handle injection days? Do you get worried? Now that we have a new administration method, I’m hopeful injections will go smoother in the future.

    • #27532
      Dennis Turner

      Glad you were able to get your shot!    Last time I got mine, I had a terrible slump just before.

      Thankful for doctors who, even although they are so very busy, still work to make things better for each of us.

    • #27534
      Alyssa Silva

      Yes, I’ve started to feel the slump as well. Usually hits me around week 10. Do you get yours done at Boston Children’s? For some reason, I feel like you said Mass Gen once though.

    • #27539
      DeAnn R

      Even though I had a great team I always had anxiety about it. Typically I’m the “difficult” case, so to my surprise the actual injection usually was the easiest part. Still I don’t miss that anxiety leading up to injection day. It’s a big factor in why I switched. Not 100% thrilled with Evrysdi though. Nothing’s easy right?

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