dorimay7 Posted October 9, 2007 Share Posted October 9, 2007 Does anyone have paraneoplastic sybdrome or any info they can share with me, I would love to find someone with this that knows what I am going through... Quote Link to comment Share on other sites More sharing options...
mary colleen Posted October 10, 2007 Share Posted October 10, 2007 Dorimay, Lots of cancer patients have some aspects of paraneoplastic syndrome. My husband has had some manifestations of it, even prior to diagnosis (he was ill for quite a while before his diagnosis.) It has quite a few signs and symptoms - what kind of problems are you having? MC Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 10, 2007 Share Posted October 10, 2007 Here is some infor for you. Just go google it and you'll find all kinds of stuff. Some of us has tons of stuff going on that it's hard for us to research for you, but it's easy to do if you google it. Good Luck. Table of Contents (click to jump to sections) What are Paraneoplastic Syndromes? Is there any treatment? What is the prognosis? What research is being done? Organizations What are Paraneoplastic Syndromes? Paraneoplastic syndromes are a group of rare degenerative disorders that are triggered by a person's immune system response to a neoplasm, or cancerous tumor. Neurologic paraneoplastic syndromes are believed to occur when cancer-fighting antibodies or white blood cells known as T cells mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older persons and are most common in persons with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to tumor detection, which can complicate diagnosis. These symptoms may include difficulty in walking and/or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo. Neurologic paraneoplastic syndromes include Lambert-Eaton myasthenic syndrome, stiff-person syndrome, encephalomyelitis (inflammation of the brain and spinal cord), myasthenia gravis, cerebellar degeneration, limbic and/or brainstem encephalitis, neuromyotonia, and opsoclonus (involving eye movement) and sensory neuropathy. Is there any treatment? The cancer is treated first, followed by efforts to decrease the autoimmune response - either through steroids such as cortisone or prednisone, high-dose intravenous immunoglobulin, or irradiation. Plasmapheresis, a process that cleanses antibodies from the blood, may ease symptoms in patients with paraneoplastic disorders that affect the peripheral nervous system. Speech and physical therapy may help patients regain some functions. What is the prognosis? There are no cures for paraneoplastic syndromes and resulting progressive neurological damage. Generally the presence of cancer determines the diagnosis. What research is being done? Research on neurologic paraneoplastic syndromes is aimed at enhancing scientific understanding of them and evaluating new therapeutic interventions. Researchers are seeking to learn what causes the autoimmune response in these disorders. Studies are directed toward developing assays that detect different types of antibodies. Scientists also hope to develop animal models for these diseases, which may be used to determine effective treatment strategies. Select this link to view a list of studies currently seeking patients. Organizations American Autoimmune Related Diseases Association 22100 Gratiot Avenue Eastpointe East Detroit, MI 48201-2227 aarda@aarda.org http://www.aarda.org Tel: 586-776-3900 800-598-4668 Fax: 586-776-3903 National Cancer Institute (NCI) National Institutes of Health, DHHS 6116 Executive Boulevard, Ste. 3036A, MSC 8322 Bethesda, MD 20892-8322 cancergovstaff@mail.nih.gov http://cancer.gov Tel: 800-4-CANCER (422-6237) 800-332-8615 (TTY) American Cancer Society National Home Office 1599 Clifton Road, NE Atlanta, GA 30329-4251 http://www.cancer.org Tel: 800-ACS-2345 (227-2345) National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 Prepared by: Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892 Quote Link to comment Share on other sites More sharing options...
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