Discussions By Condition: I cannot get a diagnosis.

Paraneoplastic cerebellar degeneration - Please Help

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: christian33
  • October 9, 2008
  • 02:50 AM

hi, my mum has "Paraneoplastic cerebellar degeneration"
she has eye movement, she cant walk, and she cant control her arm to feed her self.
we think this is caused from her ovarian cancer that was supposed of been removed.
i have read all over the net/web about "Paraneoplastic cerebellar degeneration" but there seems to be no cure.

please, what can we do or some how help my mum?

is there something that can help her balance/speech/eye movement???

and is there anything like tablets that she can take to help the imbalance in the brain caused by "Paraneoplastic cerebellar degeneration"

thanks.

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10 Replies:

  • These are questions that really you should ask the doctors. Try and find experiemental treatments if you're willing to go that route. Make sure that you've exhausted your resources before going there though. You need to speak to the certified Docs about these questions, hun.Good luck and don't give up. I pray your mum gets better.-Lauren
    Lauren456 12 Replies
    • October 15, 2008
    • 11:45 PM
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  • hi Lauren, thanks for your reply ;)i must say the doctors here suck, me and my sister run things by them andthey dont seem to want to listen :rolleyes:i have done a lot of research about this and have found that "Rituximab" and "Plasmapheresis" can help these types of illnesses.maybe my sis and i will run "Rituximab" by the doctor first as "Plasmapheresis" has some real bad side effects.my mum has been in hospital now over 3 months, the doctors said the cancer is a deadly cancer and was going to be going crazy in her body, BUT today a second scan came back and it seems nothing has spread or changed in the hole 3 months my mum has been in hospital.3 months ago the doctors gave her 6 months to live but yet the cancer, well what they think is cancer has not gotten any worse.i must say that the cancer is not showing up in her blood tests AT ALL, the blood tests shows up as a healthy person. im not saying my mum has not got cancer but its strange the doctors can seem to find cancer in her blood stream or in the cat scans. the doctors can see something in the cat scan and they are saying its cancer but at the same time their not sure if its cancer, i mean why cant they tell? very strange.when my mum first had the operation 5 months ago to remove 1 of her ovares that they think mite have had cancer in it, the doctors said they removed all the cancer. just now the doctors are lost on why my mum cant speak proply and she cant work, like something has attacked her brain....mmmm its seems like cancer but yet a stroke can cause the same thing. they did a MRI and the brain came up stroke free.......does every stroke have to show up on a MRI scan???? maybe the doctors missed it.not sure. anyway, is there no doctors on this forum? i mean whats the use of this forum?cheers.
    christian33 3 Replies
    • October 16, 2008
    • 07:31 AM
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  • The best of luck to you my friend. I'm not sure about strokes. I know that it should show up on a scan but I'm not sure if every one does. You say she has loss of function? Where does the mass on the scans show up in her body? Is it in her other ovary?There are NO doctors in this forum except very rarely. I came here with an ailment of my own and no one responded. But since I am a pre-med student I figured I could give help to other people with some banal suggestions.
    Lauren456 12 Replies
    • October 17, 2008
    • 03:45 AM
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  • Hello, my mother has also been diagnosed with paraneoplastic cerebellar degeneration. Although her test results show no malignancy, she has lost her balance so cannot walk without a walker, has head tremors, and has trouble speaking. None of the medication the doctors prescribe to her is helping her. Does anyone know if there is there anything she can do to get better..any medication out there? I've read that there is no treatment or cure and am hoping this isn't true.
    PDS1031 1 Replies
    • October 24, 2008
    • 03:33 AM
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  • Hi Christian i see that your post is up nearly 2years but im just wondering how ur mum is getting on. Im new to this so just seen it but my mum has paraneoplastic cerebellar degeneration for the last 14 months. we are from Ireland and i had been living in Australia when my mum got sick she previously had ovarian cancer but was in remission when this paraneoplastic disease began and we werre initially told she had brain metastases with weeks to live however eventually she was diagnosed with PCD. For the last 14th months she has the exact same symptoms that you described about your mum which are gradually worsening. Im a nurse and i find it very difficult to understand this disease. they told us in one hospital that there was nothing more they could do and so we got a 2nd opinion where they did a pet scan and found more cancer in her peritonium and lymph ans she is having chemo since which is working well but the neurological symptoms persist and they say that there really is no long term solution. I hope you dont mind me asking you but how have things been for your mum since and have they tried any treatments with your mum. hope to hear back from you but if it is too upsetting then no worries. thanks Maria
    marakie 1 Replies Flag this Response
  • Hello MariaJust wondering if you heard from Christian regarding his mumMy wife has also this condition......not much information on it at all as its so rare
    Anonymous 42789 Replies Flag this Response
  • Hi Christian i see that your post is up nearly 2years but im just wondering how ur mum is getting on. Im new to this so just seen it but my mum has paraneoplastic cerebellar degeneration for the last 14 months. we are from Ireland and i had been living in Australia when my mum got sick she previously had ovarian cancer but was in remission when this paraneoplastic disease began and we werre initially told she had brain metastases with weeks to live however eventually she was diagnosed with PCD. For the last 14th months she has the exact same symptoms that you described about your mum which are gradually worsening. Im a nurse and i find it very difficult to understand this disease. they told us in one hospital that there was nothing more they could do and so we got a 2nd opinion where they did a pet scan and found more cancer in her peritonium and lymph ans she is having chemo since which is working well but the neurological symptoms persist and they say that there really is no long term solution. I hope you dont mind me asking you but how have things been for your mum since and have they tried any treatments with your mum. hope to hear back from you but if it is too upsetting then no worries. thanks MariaHi MarakieMy wife was diagnosed with parreneoplastic cerabella degeneration in 1994 as a result of ovarian cancer after two years of tests and a wrong diagonoses of MS.This is an auto immune disease where the immune system attacks parts of the body for some reason or other In her case the immune system attacks the tumor by producingantibodies ( with ovarian cancer these are called anti Yo ) The antibodies damage the nerves in the cerrabellum . These are called purkinje cells.The cerrabellum is the area of the brain which controls motor skills ( the correcting mechanism which allows us to stand up with out falling over, ride a bike, reach out and pick up a cup, speak clearly etc etc )If the cancer is treated sucessfully the damage is halted but NOT repairedIn my wife case her cancer is still in remission after 16 yearsShe is in a wheel chair but can walk with a carer preventing her from falling using a waist belt, her speech has been affected but she can be understood she can eat and use a computer by her self. She has poor balance some tremor and choking but still lives at home with me as her carer. We hold our some hope of nerve repairs in the future using stem cell treatment but know this is some way off.For some more information Google the Internationl Pareneoplastic Association for theirwebsite which has links to some hospital reseach sites.I check this forum so if you need any more info i will be glad to helpCheers Ray
    Anonymous 42789 Replies Flag this Response
  • Hi. My mom started having symptoms similar to MS back 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
    • 07:17 PM
    • 0
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  • Hi all,My mom is currently going through as she was diagnosed back in October 2012. Is there anyone who would be willing to talk with me about what is going on and what I can expect?
    LEAHPRC2 4 Replies
    • August 29, 2013
    • 02:44 PM
    • 0
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  • Hi, im Gent, my mom started having problems in october 2013 with numnbness and tingling in her feet.. in December the mmemory was effected and she was "acting" like being drunked. We have made CT, MRI and PET Scan but they didn't show any cancer at all. Even that the doctors can't proove it, they think that she's having paraneoplastic cerebellar degeneration. I wanted to ask you if your mothers have experienced memory problems?
    Anonymous 1 Replies
    • January 31, 2014
    • 09:49 AM
    • 0
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