Paraneoplastic Neurological Syndromes (PNS) are a group of rare degenerative neurological disorders linked to an auto-immune response to cancer.
The Unexpected and Unprepared Caregiver! by debbiebarnum published 14 days ago
Providing 24/7 care for my Mom for the past 1 1/2 years has enriched my life in countless ways. The challenges and frustrations are many, but the rewards cannot be beat! If I had to do it all over again..... I would in a heartbeat! It all started with slurred speech we thought was related to a molar tooth that my Mom had just had pulled in September 2010. Then she seemed a bit wobbly when sh...
Paraneoplastic Limbic Encephalitis “Plus” by limbic_plus published about 1 month ago
It’s 2012 and I’m a 14 year survivor of paraneoplastic limbic encephalitis (PLE). Unlike most people with this diagnosis my own situation doesn't fit neatly into the stereotype of seizures, memory disorder, hallucinations and sleep disturbances. In 2011 I found out that there’s a new term for people like me who have a lot of symptoms that involve the hypothalamus and the brainstem (and ot...
My life the last five years. by cindimann published 2 months ago
This is the story of my life changing forever and how I am coping. Hopefully I can remember all of it. In February of 2007, I was doing great. I was working 50 to 60 hours a week as a manager of an Exxon and Mobil convenience store. I had worked very hard for 5 years to finally obtain this job. To me it was finally the job that would pay me the money that would help my husband and I in our later years. Well, it lasted about 4 years.
One day I started falling. My balance was so very off. Then a few weeks later I started having occasional...
"The Great Pretender" by kathymattersrepp published 2 months ago
Vivre avec le syndrome neurologique paranéoplasique Mon histoire..comment commencer? Ma vie a été bouleversée comme vous le savez tous et ça fait de l'effet sur ma famille et mes amis aussi, donc de nombreuses personnes participent à cette bataille à mes côtés. Je des soucis pour eux aussi. Ils ne méritent pas cette situation, pas plus que moi. J'apprécie énormément tous ceux et celle...
PCD by marilynb published 3 months ago
I was diagnosed with ovarian cancer in April 2006 and Paraneoplastic Cerebellar Degeneration in Feb. 2009. I walked with a cane until I fell and broke my arm. Used a walker until I fell and broke my back.
Now I am in a wheelchair and can't talk. I feel depressed and useless. I live in Northern -Ontario, Canada
I am so relieved to find this group. Until today, I thought I was the ...
Cerebellar degeneration - rapid onset of neurological symptoms by Rick published 3 months ago
This is the story of my mother who suffered from rapid onset of severe symptoms of paraneoplastic cerebellar degeneration related to cervical cancer. I'm always sad to introduce anyone to this group, but I'm grateful that it exists. My mother, Verne, had PCD almost 20 years ago. She was an extremely active woman, an avid swimmer, and an early "power walker", walking briskly ...
Living with PNS by NORD published 3 months ago
Lulu, a rare disease patient shares her story about living with Paraneoplastic Syndrome.
Ruth, Scotland, United Kingdom by Ruth published 5 months ago
In late July 2004, when I was 54 years old, I began to feel unwell, with nausea, dizziness and general malaise. I at first put this down to the fact that I had undergone a prophylactic oopherectomy in the April ~ due to testing positive for the BRCA 1 gene mutation, this mutation confers an 80% increased risk of developing breast cancer and or ovarian cancer.
In the following weeks ...
Paraneoplastic Neurological syn. Recent Activity
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How are we all doing?
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looking for someone from Israel with PCD
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Caffeine
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PNS Community Launch
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Successful Coping Ideas for Paraneoplastic Patients
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Friends
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Tremors
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navigate PNS
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CURE
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PNSEuronet: Syndromes paranéoplasiques
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news, published about 1 month ago
