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    • #18846
      Ashley Gregory

      Good morning my fellow LEMons!

      Did you know that studies have been performed to study Anti-SOX1 (Anti-Sry-like high mobility group box 1) antibodies and found that having them present is predictive of paraneoplastic LEMS?

      What does this mean?

      We can test for Anti-SOX1 antibodies in patients that may not test positive for N-type or P/Q calcium channel antibodies to determine if they have LEMS. We can also test patients with P/Q or N-type antibodies to get a better idea of if there LEMS is caused by cancer. Positive Anti-SOX1 antibodies are “highly suggestive” of paraneoplastic LEMS.

      If you want to read more about this, you can check out the article posted on Lambert-Eaton News or you can check out the actual study here.

      Have any of you been tested for Anti-SOX1 antibodies?

      What do you think about this?

      Do you think that in the future this antibody test could be offered every 6 months to a year for those patients still undergoing cancer surveillance? Do you think it could replace a PET or CT scan?

    • #18934

      Thank you, @ashleygregory757, for this forum post.

      I asked my neuro to run this lab and thankfully it came back negative! I am P/Q type antibody positive.

      Yes, I think this is a good test to repeat in the future. Correct me if I’m wrong but from what I have read SOX 1 is to detect SCLC (Small Cell Lung Cancer)? If so, I would still get a PET or CT scan to make sure I rule out everything out.

    • #18942
      Ashley Gregory


      Glad you found it useful! 🙂

      Glad to hear your SOX1 was negative!

      Yes, SOX mainly detects SCLC. Current data still recommends that LEMS patients get “cancer screening” scans (PET/CT) for the first 3 years after diagnosis.

      My neurologist did a PET scan and a CT the first year I was diagnosed, and then a follow up of a CT scan yearly. Some neurologists recommend getting scanned every six months, so that part is still up for debate

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