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1. • CommentAuthormlrpurple62
   • CommentTimeSep 4th 2009

    # 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. • CommentAuthormlrpurple62
   • CommentTimeSep 21st 2009

    # 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!
3. • 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
4. • CommentAuthorRosie
   • CommentTimeMay 14th 2010

    # 4Report Post
   Hello, I was very interested by your story as my friend was diagnosed with paraneoplastic syndrome in mid-November 2009. She has ovarian cancer and had surgery about 3 weeks ago. At first they thought that she had reacted to the chemo treatment drugs. She has gradually lost most of her motor skills, her speech is slurred, her head and hands are constantly shaking. She's had the IVIg treatment but that hasn't helped. Now they're trying a drug used for high blood pressure to see if that would reduce the trembling. Is your Mom shaking as well? I'm very sorry that your mom is going through this as well.
   Rosie
5. • CommentAuthorray
   • CommentTimeJun 8th 2010

    # 5Report Post
   Hi, My wife had the same diagnoses in 1994 after treatment for ovarian cancer. It took two years to get a correct diagnoses after a million tests and an incorrect diagnoses of MS. She has all the symptoms you discribe. We have been living with it for 16 years and I have found out most there is to know about it
   ( not a lot ) if you still need help
   
   Ray
6. • CommentAuthorRosie
   • CommentTimeJun 8th 2010

    # 6Report Post
   Thank you Ray for your comments. Has the shaking subdued over the years? Did she undergo plasma exchange treatments ? Is she able to use a walker or a wheelchair or eat on her own? As you said, there is very little information available, especially on the rehab part. My friend is now into the rehab section of the hospital and is expected to be able to go home in another 8 weeks. She's still so weak and now has trouble swallowing. The shaking is very agressive and makes it hard for her to do anything on her own. Her husband would be happy to know that there is a possibility that she'll survive this. He has started building a ramp in the hope that she'll make it back home.
   Rosie
7. • CommentAuthorray
   • CommentTimeJun 8th 2010

    # 7Report Post
   Hi Rosie
   The symtoms she is showing depend on the amount of damage which has been done to the nerves. To start from the begining the diaognosis is "pareneoplastic cerrabela degeneration" In auto immune diseases the immune system attacks certain parts of the body as a resut of trying to protect the body from attack of some kind.The reason for this is not understood
   In this case the immune system attacks the cancer tumor ( mostly ovarian or lung cancer) and while doing so damages the nerves to the cerrabellum ( the part of the brain which controls our motor skills and most importantly our all important correcting skills)
   
   This is what enables us to stand up with out falling over, ride a bike, reach out and pick up a cup, talk etc etc
   
   If the cancer is treated successfully the damage to the nerves is halted but unfortunatly NOT repaired.
   
   
   In my wifes case she was able to have her rehab treatment as an out patiant as her nerve damage was proberbly
   not as severe.
   She is in a wheechair but can walk using a walker with a carer walking behind supporting her with a waist belt
   Her speech has been affected but can be understood , she can eat , drink etc on her own with some choking
   problems, some tremor, poor balance.
   
   Rehab is important as there is some improvement over the first year ( speech as this helps with eating as well
   as speech and exercise of any type)
   Her cancer is still in remission after sixteen years ( treatment was surgery and chemo) She didnt have plasma treatment
   I hope this is of some help for a start and I will post more later
   Cheers Ray
8. • CommentAuthorray
   • CommentTimeJun 8th 2010

    # 8Report Post
   Hi
   Just a quick add on to my last post
   Google the International Pareneoplastic Association for their website which has links to
   several hospital research sites
   
   Ray
9. • CommentAuthorRosie
   • CommentTimeJun 12th 2010

    # 9Report Post
   Hello Ray,
   
   Thanks again for all this info - it's very much appreciated.
   
   Rosie