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Shellee

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  1. Hi Miqual, I found the DINET site and your question today when searching for information for my daughter. i note that you posted your question in 2013. Do you have any updated information that you can share? My daughter was diagnosed with dysautonomia in 2014 at the age of 13. She completed a dysautonomia autoimmune panel in December 2014. (Mayo) and we learned she had calcium channel - N-type, but our doctors at Children's Hospital did not know what to make of it, as we are not seeing any indication of LEMS. We were told VGCC-n-type sometimes shows up in dysautonomia, but they don't know why. We spent a month at Mayo in 2015, including several weeks at the Pediatric Pain Rehabilitation Center. Despite following Levine Protocol and doing following every recommendation for POTS, her symptoms have continued to worsen. We retested for the autoimmune panel this July (2017), and the Mayo test came back almost identical in titer value to 2014. Our autoimmune neurologist said the #s would be significantly higher if my daughter were paraneoplastic. No signs of LEMS, She just completed testing for chronic encephalitis . I'm grateful for all the "normal" and "negative" results, but we still have no answers. In the past few weeks, she has undergone a lumbar puncture and autoimmune panel for encephalitis, Brain and Lumbar MRIs. My daughter started IVIG therapy in November with her immunologist. We have not seen any improvement. It has been suggested that we consider Rituximab and/or Cellcept. I'm uncomfortable with these options. Thank you for your time. I'd appreciate any insight re: voltage-gated calcium channel - N-type and Dysautonomia. Shellee
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