MANAGING YOUR OWN Neuropathy TREATMENT


Part I: BECOMING YOUR OWN BEST NEUROPATHY ADVOCATE
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

Join The Neuropathy Association at 1-880-247-6968, http://www.neuropathy.org/. You can get information on neurologists and support groups in your area.
Read The Neuropathy Association’s booklets Explaining Peripheral Neuropathy, Exercising with Neuropathy, and A Guide to the Peripheral Neuropathies.
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 http://www.google.com/), and type “neuropathy” in the search box
Do Your Homework as a Patient
Prepare your medical history, recording all illnesses, accidents and surgeries since childhood. Make a list of current medications and dosages to share with physician.
Bring along prior EMGs (Electromyogram), NCVs (Nerve Conduction Velocity), skin or nerve biopsies, blood tests, and any other tests from a previous neurologist.
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.
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.
When medications are prescribed, check on the Internet for drug interactions and drug side effects by again using a search engine like http://www.google.com/ to look up your medications. Also consult with your pharmacist and read through any inserts provided with your medications.
If you are not satisfied, you can get another opinion from a different neurologist.
Ask your physician or the Association about clinical trials where new medications are tested.
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!

ABOUT peripheral NEUROPATHY: FACTS

Peripheral neuropathy is a disorder of the peripheral nerves—the motor, sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. It usually affects the hands and feet, causing weakness, numbness, tingling and pain. Peripheral neuropathy’s course is variable; it can come and go, slowly progressing over many years, or it can become severe and debilitating. However, if diagnosed early, peripheral neuropathy can often be controlled.
Why Have We Heard So Little About Peripheral Neuropathy? Is It A New Disease?
Peripheral neuropathy is common. It is estimated that upwards of 20 million Americans suffer from this illness. It can occur at any age, but is more common among older adults. A l999 survey found that 8-9% of Medicare recipients have peripheral neuropathy as their primary or secondary diagnosis. The annual cost to Medicare exceeds $3.5 billion.
Peripheral neuropathy has always been present, but has not received much attention. Its extent and importance have not yet been adequately recognized. It is apt to be misdiagnosed, or thought to be merely a side effect of another disease like diabetes or cancer or kidney failure. The development of new therapies has unfortunately been slow and under funded.
What Causes Peripheral Neuropathy?
There are many causes of neuropathy. Approximately 30% of neuropathies are “idiopathic,” or of an unknown cause. In another 30% of cases, the cause is diabetes. Other neuropathy causes include autoimmune disorders, tumors, heredity, nutritional imbalances, infections or toxins.
Can Peripheral Neuropathy Be Cured?
Some types of peripheral neuropathy can be cured, however, most cannot. However, many can be helped. Therapy is directed at treating the underlying disease and at improving the symptoms with the right medications. An experienced neurologist can help patients feel more comfortable, and their quality of life can be greatly improved. But it is extremely important to get to an experienced neurologist as soon as you notice the symptoms before the disease has a chance to cause too much permanent damage

Peripheral Neuropathy Awareness & Attention

ABOUT peripheral NEUROPATHY: AWARENESS AND ATTENTION
The National Institutes of Health spent $35 million in 2004 and $29 million in 2005 on peripheral neuropathy research. NIH funding for neuropathy research lags far behind its investment in other neurological disorders. For other disorders with a similar range of disability (multiple sclerosis and epilepsy), the NIH expenditure per patient ratio is approximately 200 times greater than it is for neuropathy.
Too often, patients are told there is nothing that can be done for them, they will just have to live with it. Some patients are even told it is all in their heads, that they are imagining it. People who are suffering with the disorder often feel they have nowhere to turn. They feel isolated and alone. Even their families do not understand what they are going through and start to doubt them. The Neuropathy Association is working hard to change these perceptions through its awareness-building and outreach activities.
Public awareness of this illness is unfortunately low. A 1999 awareness survey reported that only 7% of all adults in the U.S. know about neuropathy. And, yet, it is estimated that up to 20 million Americans, whether they know it or not, currently have some type of neuropathy.