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Andrew replied to the topic Spinraza Cycles in the forum Spinraza 2 months, 1 week ago
For me when I was on Spinraza I always felt a boost in stamina/energy almost immediately after the LP and for the first few days even though there was a recovery period for my lower back that ranged from a few days to a few weeks I always felt the effects of the medicine the most in the first few days. I feel like it still worked pretty well for…[Read more]
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Andrew replied to the topic SMA Typing (as in type 1, 2, 3 or 4) in the forum Diagnosis Information and General Questions 7 months ago
I agree that the old SMA type system is super outdated and for me personally and has caused me issues. I was diagnosed with SMA type III when I was a child and the few years leading up to my growth spurt I struggled to walk independently and around the time of my growth spurt at age 12 is when I pretty much lost my ability to walk independently.…[Read more]
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Andrew posted a new activity comment 1 year, 11 months ago
Hi Alyssa. Thanks for the warm welcome! Atm I’m just mostly being a lurker and plan on mainly reading forum posts and discussions. If I feel like I can provide some useful input on a topic my goal is to try and do so. I’ll be sure to reach out to you, Kevin, or DeAnn if I have questions. Once again thank you for the warm welcome & looking forward…[Read more]
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Andrew became a registered member 1 year, 11 months ago
Hi Andrew. Welcome to the forums. I’m Alyssa, one of the moderators here. I see you have SMA type 3 and live in Massachusetts. I live right over the border in RI! If you have any questions please feel free to reach out to me, Kevin, or DeAnn. You can also introduce yourself in the welcome forum here. We have tons of resources for you here but l…[Read more]
Hi Alyssa. Thanks for the warm welcome! Atm I’m just mostly being a lurker and plan on mainly reading forum posts and discussions. If I feel like I can provide some useful input on a topic my goal is to try and do so. I’ll be sure to reach out to you, Kevin, or DeAnn if I have questions. Once again thank you for the warm welcome & looking forward…[Read more]