Discussions By Condition: Brain conditions

Paraneoplastic cerebellar degeneration

Posted In: Brain conditions 3 Replies
  • Posted By: LEAHPRC2
  • August 28, 2013
  • 07:26 PM

Here's my mom's story on her recent diagnosis of paraneoplastic cerebellar degeneration:

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 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.

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3 Replies:

  • Hi I am sorry about your mom, my wife was diagnosed in March this year. Unlike your mom my wife has had endometrial serous carcinoma and had been removed successfully in April 2011 but she developed this condition end of January starting with losing balance and speech now she is Dysphagic and cant walk without A frame and need assistance. She has had IVIG high dose a 5 days treatment now 3 times and has improved in her speech. Unfortunately your mom has not developed the cancer so the anti body is just keep on damaging her brain just like it did to my wife until she got the treatment. I am hoping to get 6 months treatment because there have been 2 cases responded well with 6 repeated high dose IVIG. Are you in Australia? What anti body does your mom have ? is it anti YO? You can email me on my private email if you wish to talk about it. Take care:)
    wahjudi 2 Replies
    • October 26, 2013
    • 11:01 AM
    • 0
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  • Hi I did make a reply but don't know what happened to it. My wife has been diagnosed with PCD in March 2013. She is now wheelchair bound and lost her speech. Having had 3 IVIG treatment she has improved a lot in her voice strength. But she is dysphagic so sad about it. Cant eat solid food only thickened fluid. I don't know what to do to improve the dysphagia. She is undergoing a rehab Physio speech therapy and Occupational therapy for the next 4 weeks. I am trying to have her treated with 3 more cycles of IVIG. Your mom need to have her cancer found and removed plus chemo then IVIG 6 times. I think Plasmapheresis should be good to reduce the antibody level try getting it to zero. Then do IVIG again. Good luck. Keep us informed. You can send email to me on my private email. ThanksI am in Western Australia
    wahjudi 2 Replies
    • October 26, 2013
    • 11:12 AM
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  • Hang in there. Before my mom's cancer relapsed she had very similar paraneoplastic cerebellar symptoms and she just isn't the same person anymore. I love her so much; she is my best friend in the world. And I feel like I'd give anything to be able to talk to her again like she used to. I am going to medical school next year (hopefully at Wake Forest) and a big part of my research will be to help patients like your mother an my own structure a path to recovery.
    Anonymous 1 Replies
    • November 28, 2014
    • 04:20 PM
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