Patient Toolkit

The Peripheral Neuropathy Patient Toolkit includes documents to promote a dialogue with your health care team including pain symptom guides and diagnostic tests. Other resources detail guidelines for neuropathy treatments approved by the FDA and AAN. Help with day-to-day living and individual treatment success stories fill out the patient toolkit.

The Neuropathy Action Foundation, Los Angeles, CA and Scottsdale, AZ

This West Coast-based organization is primarily an advocacy non-profit that works to spread awareness of the condition among patients and medical professionals. It is notable for having a formal lobbying presence in the state legislatures of California and Arizona, particularly, where it works to make treatments such as IvIg more readily available. It includes a number of legislators and legislative aides, both past and present, on its Boards (Directors and Advisory). The Neuropathy 101 section is a good introduction to the disorder.

The Foundation for Peripheral Neuropathy

This Midwest-based Foundation for Peripheral Neuropathy non-profit is heavily involved with fundraising for research into neuropathy causes and treatments. It also sponsors seminars and educational conferences in conjunction with Northwestern hospital and the Jack Miller Center for Peripheral Neuropathy in Chicago (Jack Miller is on its Board and is a major fundraiser). It contains good tips in the “Living With Neuropathy” section.

Neurotalk

Neurotalk is the successor to Braintalk—it was started by Dr. John Grohol as a companion to his PsychCentral board during a major crash of Braintalk’s database some years back. It has rapidly become THE discussion board to go to about things neurological, and the Peripheral Neuropathy section is one of the busiest. Neurotalk (as Braintalk did before it) differs from most on-line discussion forums as to the extent of its database and links, which are second to none—among the people who frequent it are medical professionals and researchers, both professional and amateur, the latter including some of the Internet’s leading lay experts on neurological conditions, whose breadth of knowledge and cache of documents and studies rivals that at any medical college.

Neuropathy Commons

This comprehensive site is maintained by the neurology department of Massachusetts General Hospital, one of the leading research and treatment centers for neuropathy. It has considerable information on diagnostics, types, genetics, current research, and it has a somewhat unusual section for teens and kids, a cohort rarely thought of as regards neuropathy (which is usually thought of as affecting older individuals).

Washington University at St. Louis Neuromuscular Website

This is the diagnostics entry point for the neuropathy section of the huge neuromuscular conditions database at Washington University of St. Louis' medical website. It is written primarily in outline form, and mostly for medical professionals, but it is extraordinarily comprehensive; going through the links and sub links reveals a wealth of info on neuropathy (and other neuromuscular conditions).

An Algorithm for the Evaluation of Peripheral Neuropathy

The famous Poncelet protocols. Outside of neurology textbooks, this article has become the "gold-standard" guideline for many physicians and neuros for investigating the causes of potential neuropathies. The flow charts are particularly instructive (and good to show ignorant physicians).

Small Fiber Neuropathy

One of the best articles I know written about small-fiber neuropathies, which can be difficult to diagnose, as "standard" tests for neuropathy often come up "normal" and fail to reveal them (and meanwhile patients suffer). The reference list is excellent—it includes many of the seminal papers on skin biopsy, autonomic testing, and small-fiber vasculitis and other causes of small fiber dysfunction (these can themselves be investigated if one wants).

Diabetic Autonomic Neuropathy

If you ever wanted to understand diabetic autonomic neuropathy, this article is for you. In fact, Dr. Aaron Vinik is probably the world's leading expert on diabetic neuropathy of all kinds, and Googling his name can keep you busy for months. This article has a reference list one could choke on, but it contains almost every important paper on diabetic neuropathy written in the last 30 years.

Laboratory Diagnosis of Peripheral Neuropathy

This is a fairly comprehensive listing of laboratory blood testing to identify potential causes of neuropathy, from world-renown expert and researcher Norman Latov and his book 'Peripheral Neuropathy:  When the Numbness, Weakness, and Pain Won't Stop', and one should compare one's own workup to this list regularly

Emedicine

For those who like to look up many conditions in one place, I highly recommend the Emedicine series of articles at emedicine.com. You have to sign up as a user, but then you can peruse the database. The material is dense—written for medical personnel, again—but highly comprehensive.

Calgary Neuropathy Association - Canada's source for Neuropathy Information, Education and Support

As Canada's largest neuropathy non-profit, the Calgary Neuropathy Association, led by Linda Petiot (who herself suffers from the hereditary neuropathy Charcot-Marie-Tooth Type 1) not only has support groups and expert presentations but has amassed a considerable database of neuropathy information; of particular note is the '100 Things for Neuropathy Relief' section, a listing of actionable steps for reducing neuropathy symptoms.

 

 

This is not meant to be an exhaustive list, of course—there are many thousands of papers and sites about particular types of neuropathy, causes, treatments, etc., and in this day age we are fortunate to be able to access them with a few button clicks. These are a good general starting point, though, and can help you with the language you need to make your symptoms understood (with medical professionals, with employers, with family) and with self-advocacy for investigation and treatment.