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I am Lulu

This is my Story:


My husband, Robert, calls my rare disease a “brutal and unkind disease."  But it all began with very mild symptoms … numbness in three toes on my left foot.  View my video to learn more about paraneoplastic neurological syndromes.

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I have Paraneoplastic neurological syndrome.

Paraneoplastic neurological syndromes (PNS) are a group of conditions that can affect the nervous system in people with cancer.  They occur as a result of the patient's immune system to the malignancy.  PNS may cause severe damage to the nervous system.

  • PNS is estimated to occur in less than 1% of patients with cancer.
  • Symptoms of PNS often occur before the person realizes he or she has cancer.
  • In the majority of patients with PNS, the tumor is localized to one site without having spread (metastasized) to other parts of the body.
  • The diagnosis of PNS is based on a combination of symptoms, lab studies and the specific paraneoplastic antibodies that may be found in the blood and/or spinal fluid.
  • Treatment of PNS varies, but the main therapy is treatment of the underlying cancer.

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