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Some Resources for More Information on Peripheral Neuropathy
Updated: Sunday, August 24, 2014 05:54:55 PM

The Neuropathy Association provides patient support and education, advocate for patient's interests, and promotes research into the cause and cure of neuropathy from any cause. (Most information is related to diabetes-caused neuropathy.) Membership is free, by donation. Write to: 60 E 42nd St., Ste. 942, New York City, NY, 10165-0999 or call 1-800-247-6968. On web site http://www.neuropathy.org   with the best information under "Member Services." Must register to access this information, but it is free to register. Also, there is a bulletin board and a list of treatment centers. This organization also has many local chapters or support groups.

Neuropathy Trust also provides support and education for those who also have peripheral neuropathy. Write: PO Box 26, Nantwich, Cheshire, United Kingdom CW5 5FP. They have lots of information on their web site http://www.neuropathy-trust.org .

The Institute for Peripheral Nerve Surgery in Baltimore, MD has information about a new procedure called nerve decompression for peripheral neuropathy. The director of the Institute is a full professor of plastic surgery and neurosurgery at Johns Hopkins School of Medicine. Phone 410-467-5400 or check their web site at http://www.dellon.com .

National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institute of Health, 800-352-9424, http://www.ninds.nih.gov and then search NINDS for "peripheral neuropathy".

American Foundation for the Treatment of Pain provides support for people with chronic pain and is a resource for information regarding legal issues regarding the legitimate treatment of pain. 831-655-8812, http://www.paincare.org

General tips for pain management at http://www.mayohealth.org and then search for "peripheral neuropathy".

Good links to web articles at http://www.ons.org/ons/library   and click "search" for neuropathy. Must register, but registration is free.

Tips at http://members.aol.com/chester878/index.html , then click on "help with side effects", and then click "Anita's Helpful Remedies."

Review of the scientific literature from Anti-Cancer Drugs 1995, 6, p.369-83.

John Hopkins Medical Letter: Health After 50, article in July 1999 issue, p 4-5.

Article entitled, "Understanding Peripheral Neuropathy...", published in Clin.J.Onc.Nursing, May/June 2002, 6(3):163-166.

Article in Soc.Gyn.Nur.Onc. Journal, Winter 1999, p. 7-12.

Booklet entitled, "Patient Guide to Peripheral Neuropathy" on safety hints, distributed by Memorial Sloan-Kettering Cancer Center, NY.

Article entitled, "Peripheral Neuropathy in Cancer Patients" by Corbo and Balmaceda in Cancer Investigation, 2001, 19(4):369-382.

NINDS Peripheral Neuropathy Information Page http://www.ninds.nih.gov/health_and_medical/disorders/peripheralneuropathy_doc.htm

Book entitled Numb Toes and Aching Soles: Coping with Peripheral Neuropathy (published 1999, 300 pages) and a companion book entitled, Numb Toes and Other Woes: More on Peripheral Neuropathy (published 2001, 230 pages). Both were written by John A. Senneff. Each is about $23. This set of books was written by a non-medical person who has personally dealt with peripheral neurpathy. He covers many of the same topics which are discussed on this web site and has some additional information.

The "Cancer-Neuropathy" Discussion List focuses on neuropathy induced by cancer and treatments. This List has several hundred members but the postings are "light" when compared to other Lists. To sign up, send an e-mail to listserv@listserv.acor.org  . In the "subject" area, type a dash or leave blank. In the "message" area, type "Subscribe Cancer-Neuropathy" followed by your first and last name. (For example, Subscribe Cancer-Neuropathy Mary Jones". To access the archives (past postings) of the Cancer-Neuropathy List, go to http://www.acor.org and browse through the alphabetically-arranged list until you reach "cancer-neuropathy". Then follow the directions.

The National Chronic Pain Outreach Association is forming online support groups (540-862-9437) http://wwww.chronicpain.org

Bristol-Myers Squibb Oncology has published a book Resources: A Guide for Women Living with Ovarian Cancer. At 100 pages long, it is filled with information written in a friendly, clear fashion and supplemented with exquisite art work on each page. It's a delight to the mind, eyes, and soul...providing the light of hope to the darkness. You can be assured that the information is medically sounds, having been through the rigorous revisions by ovca physicians, nurses, and social workers. In addition, it is "woman friendly" because ovarian cancer survivors (including members of the Ovarian Cancer National Alliance and Cindy, too!) had significant input into the content. Major segments, all with many resources, are: after the diagnosis, coping with side effects, seeking support, legal and financial matters, and after treatment ends. For this reason, even though it is focused on ovca, it would be an excellent resource for someone who is fighting any type of cancer. I wish it had been available when I was diagnosed. Best of all, this book can be yours free. A Bristol-Myers Squibb representative will deliver multiple copies of this book to clinics and offices of physicians upon request. If your doctor's office doesn't yet have these books, ask the office staff the call the Bristol-Myers Squibb drug rep and ask for a supply of the book, being sure to specify item number K4-FO24.

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