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General: Paraneoplastic Syndrome

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  1.  # 1Report Post
    Hello...My story is really my Mothers story. She was diagnosed with partineal cancer which is relatively similar to ovarian cancer which is found in the abdominal cavity. During and shorty after treatment (chemo) she started to weaken. We were told that it was due to the amount of chemotherapy she had and that she would strenghten over time. This did not happen, in fact her health worsened. We took her to physical therapy where they said after several months that there is no improvement and suggested she see a neurologist. She had already seen a neurologist and they suggested she do physical therapy. A vicious circle. We decided to try seeing a neurologist again but not the same one we saw previously. This is after about a year or so of using a walker and slowly getting worse. The neurologist immediately said "I think I know whats wrong with you". She ordered lab work that had to be sent to NY (we live in CA). The tests came back positive for Paraneoplastic Syndrome. She has an Anti-Yo antibody that has attacked the good cells in the base of her brain that controls the motor skills. Hence the problem with walking, balance etc. She has had several types of treatments, chemotherapy IV, plasmapherisis, chemotherapy pills etc. Nothing has helped at all. It breaks our hearts to see someone like my Mom (71 years old) that was so full of life @ 69 years old, climbing on the roof to clean gutters and windows in a 2 story house etc. to become locked up in her own house, confined to barely getting to the bathroom on her own.
    Is there anyone that is going through this? This is such a disabling disease, but so very rare that I cannot find anything on the internet to help her. Can anyone offer any advise or help on this topic? Is there some research being done that anyone is aware of?
  2.  # 2Report Post
    Wow...Still not able to find anyone out there that is going through this. If there is anyone that can shed some light, please let me know. Thanks!
    • CommentAuthoralcyon73
    • CommentTimeSep 21st 2009
     # 3Report Post
    I don't have paraneoplastic syndrome, but I did a little digging on the internet and found some basic information on the condition.

    Apparently the underlying cancer is generally treated first.


    here is a link to the national institute of health web site:

    http://www.ninds.nih.gov/disorders/paraneoplastic/paraneoplastic.htm


    and Wikipedia has a pretty good writeup on it:
    http://en.wikipedia.org/wiki/Paraneoplastic_syndrome


    And similarly the mayo clinic has some info: http://www.mayoclinic.com/health/paraneoplastic-syndromes/DS00840


    I hope this helps

    Glen

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