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Paraneoplastic cerebullar degeneration

Posted In: Medical Stories 2 Replies
  • Posted By: marakie
  • February 27, 2010
  • 05:41 PM

hi my name is Maria from Ireland and my mother was diagnosed with Paraneoplastic cerebellar degeneration 13months ago. She has been left severely disabled by the disease and i was wondering if anyone else knows someone with the disease and wants to discuss their case with me. My mother has tried all the treatment offered to her with no sucess and i also wanted to know if the paraneoplastic disease itslef can kill or the underlying cancer usually found after diagnosis which it was in my mothers case. her primary was in her ovaries 2 years ago and it was 3 months into remission that she developed the neurological symptoms which were very rapid and have not reversed if anyone can help me i would really appreciate it. thanks Maria

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  • hi my name is Maria from Ireland and my mother was diagnosed with Paraneoplastic cerebellar degeneration 13months ago. She has been left severely disabled by the disease and i was wondering if anyone else knows someone with the disease and wants to discuss their case with me. My mother has tried all the treatment offered to her with no sucess and i also wanted to know if the paraneoplastic disease itslef can kill or the underlying cancer usually found after diagnosis which it was in my mothers case. her primary was in her ovaries 2 years ago and it was 3 months into remission that she developed the neurological symptoms which were very rapid and have not reversed if anyone can help me i would really appreciate it. thanks Maria Hi Maria, I have a friend who had Cerebellar Paraneoplastic Syndrome about 17 years ago. She had Hodgekins lymphoma. My understanding of the disorder is that the antibodies do there damage in 2 or 3 weeks and then that's it. She moved away years ago so I don't know how she is doing now, but some years into it there had been no change. I don't know of any effective treament for it. I know of only one longshot possibility. I had subacute combined degeneration and some severe balance problems associated with the neurological degeneration. In my case it was caused by undiagnosed b12 deficiency, and that is a long story. The damage is presumed permanent after about 6 months. However, working from Japanese research many of us with such problems have found substantial but not 100%, improvment. I requires multiple high dose methylcobalamin injections plus other nutritional factors. The Japanese research indicates improved functioning that regresses when the treament is stopped. I have had over 90% improvment. My balance was shot and I had footdrop and lack of motor control of one lower leg and foot and the other was close behind and I was rapidly headed for a wheelchair. Instead I spent the better part of 2 weeks up on a roof last summer redoing the roof. I had been falling unpredictably and don't do that anymore. Whereas subacute combined degeneration is caused by b12 deficiency in the first place paraneoplastic degeneration is not. However, there are studies that show that the mb12 is also effective in recovery of function in MS and ALS and other causes of damage. If you would like to talk about it come on over and talk to folks. http://forums.wrongdiagnosis.com/showthread.php?p=219477#post219477 There is only a slim possibility that it might work but who knows without trying. As the response usually begins rapidly, sometimes within hours, if there is any response, a 90 day trial would tell you everything about it. Good luck.
    Freddd 3576 Replies Flag this Response
  • Hi Maria-My mom is currently going through this and I, too, am looking for a support group/someone to talk to. Please let me know if you are willing to talk to me about this. She started having these symptoms in October 2012. She was taken to the doctor who ran tests for MS and everything came back negative. She has gone through several rounds of tests for every known condition, only to find out that her diagnosis is paraneoplastic cerebellar degeneration.Starting around the end of October 2012, mom began to notice a little lack of control of one of her legs. The time between October 2012 and January 2013, her symptoms have worsened as she has lost her ability to walk without a walker or wheelchair, her speech was impacted and she had some double vision and eye coordination issues. These, among other symptoms appeared to be caused by antibodies that her body was and still is creating to fight a yet unidentified return of cancer. In very rare cases this happens and until the cancer presents itself, the antibodies attack the cerebellum, which is the area of the brain that controls the functions being impacted. The treatment is to go after the cancer but that can't start until it presents itself ....In the interim, the antibodies will continue to cause degradation so you have to try and counteract those. The doctors started her treatment with three rounds of IVIG treatments, in the hospital; one in January, March, and May. Although the doctors were hopeful that these three treatments would improve her symptoms, they had no effect. We had her doing speech, physical, and occupational therapy to try to improve her status but, once again, therapy did nothing. The doctors at Wake Forest University suggested that we try plasmapharesis so, the first week in July was spent in the hospital having the first of two sets of plasmapharesis, hoping we would notice a big difference in her day-to-day abilities. So far, nothing has improved and to me, she has gotten worse. We are slated to start another round of plasmapharesis in early September 2013 but, I am not very hopeful since the last treatment did absolutely nothing. I have read many articles online and did some of my own research but since this is such a rare condition, I wanted to find other people who either are going through or know someone who is going through to talk with. I just want my mom back to talk to. I created a page on facebook to keep all of our friends and family updated on her status. Please message me if you want the link to the page to track her progress. She has been in pretty good spririts through all of this considering everything that is going on. She has difficulty communicating with us to the point where I have to put my ear right up to her mouth to understand her, she still is not able to function normally (i.e. not able to walk, stand, talk, lost all control of fine motor coordination, among lots of other day-to-day things that most of us take for granted. Again, she is facing this head on with all the strength and faith we all know she has.
    LEAHPRC2 4 Replies
    • August 28, 2013
    • 07:21 PM
    • 0
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