The following article is part of on-going series on how to be a better champion of your own care and treatment for neuropathy as featured in Neuropathy News. Over the next several months, we will explore how to navigate medical discussions, insurance claims, and other issues impacting your day-to-day management of your illness.


Since neuropathy is often a difficult disease to diagnose, it is wise to become an informed patient, gathering up as much information as possible and becoming knowledgeable about your symptoms.  There are approximately 100 different types of peripheral neuropathy, and unfortunately not every neurologist is familiar with the disease, treatments and services available.  Prepare yourself by reading, learning the vocabulary, accurately describing your symptoms and providing a full medical history to the neurologist.  Other health providers who deal with aspects of neuropathy include pain specialists, physical and occupational therapist and podiatrists.  Taking a proactive approach to your illness will help you engage more effectively with them in their efforts to treat your specific neuropathy.

Becoming Informed

  1. Join The Neuropathy Association at 1-880-247-6968,  You can get information on neurologists and support groups in your area.
  2. Read The Neuropathy Association’s booklets Explaining Peripheral Neuropathy, and Exercising with Neuropathy.
  3. Read Numb Toes and Aching Soles and Numb Toes and Other Woes both by John Senneff and available from the Association or your public library.

Check the Internet for articles: go to a search engine (like, and type “neuropathy” in the search box

Do Your Homework as a Patient

  1. Prepare your medical history, recording all illnesses, accidents and surgeries since childhood.  Make a list of current medications and dosages to share with physician.
  2. Bring along prior EMGs (Electromyogram), NCVs (Nerve Conduction Velocity), skin or nerve biopsies, blood tests, and any other tests from a previous neurologist.
  3. Write down the important questions you want to ask the doctor.  Bring along a family member or friend to listen to the doctor, and to record answers to your questions.  They can also help you make sure you covered everything on that list.
  4. Always get copies of previous evaluations or summaries, and tests you have taken so you will have a complete medical history if you change doctors.
  5.  When medications are prescribed, check on the Internet for drug interactions and drug side effects by again using a search engine like to look up your medications.  Also consult with your pharmacist and read through any inserts provided with your medications.
  6. If you are not satisfied, you can get another opinion from a different neurologist.
  7. Ask your physician or the Association about clinical trials where new medications are tested.
  8. Join, or start a support group where you can exchange information with others.

Remember, you are not alone in this!  There are plenty of resources out there to help you, and they will ultimately better serve you if you help yourself!


    Part II:    Improving Your “Deficits” to Make Life a Little Easier

    Part III:   Navigating the Seas of Social Security Disability

    Part IV:   Understanding Your Medications

    Part V:    The Value of Occupational Therapy and Assistive Devices

    Part VI:   Benefiting From Support Groups


More Living with Neuropathy:


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