• Spinraza and CSF

    Posted by deann-r on December 6, 2019 at 11:22 am

    In case you haven’t seen this article I thought I’d share it here. I’ve often wondered if there would be long term effects from repeated lumbar punctures. The article suggests that although it’s been well tolerated, some monitoring of CSF can be done. For me it’s not something I’m concerned about. What did you take away from the article?

    deann-r replied 4 years, 4 months ago 2 Members · 2 Replies
  • 2 Replies
  • alyssa-silva

    December 6, 2019 at 2:02 pm

    I’m a little confused. Doesn’t our CSF get tested regularly already? After each injection, I always get lab results of my CSF. Does that not happen at all injection sites??

  • deann-r

    December 6, 2019 at 2:46 pm

    I’m pretty sure mine isn’t tested. Usually I see in the notes clear CSF was removed, but that’s the extent of it. I’m sure if it looked cloudy or suspicious they’d do more testing. Maybe depends on the facility?

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