Frequently Asked Questions (FAQs)

GENERAL QUESTIONS

RESEARCH

CLINIC APPOINTMENTS

General Questions

1. What causes peripheral neuropathy?

   Peripheral neuropathy is not a single disease. It is a general term for a series of disorders that result from damage to the body's peripheral nervous system. The peripheral nervous system sends messages from the brain and spinal cord (central nervous system) to the rest of the body: the arms and hands, legs and feet, internal organs, joints and even the mouth, eyes, ears, nose, and skin. Peripheral nerves also relay information back to the spinal cord and brain from the skin, joints, and other organs. Peripheral neuropathy occurs when these nerves are damaged or destroyed, resulting in loss of sensation, pain, or inability to control muscles.

   There are many causes of peripheral neuropathy, including diabetes, hereditary disorders, inflammation, infections or autoimmune diseases, protein abnormalities, compression or physical trauma, exposure to toxic chemicals, poor nutrition, kidney failure, chronic alcoholism, and certain medications - especially those used to treat cancer and HIV/AIDS. In some cases, however, even with extensive evaluation, the cause of a person's peripheral neuropathy remains unknown - this is called idiopathic neuropathy.

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2. What are the symptoms of peripheral neuropathy?

   Peripheral neuropathy usually starts with numbness, prickling or tingling in the toes or fingers. It may spread up to the feet or hands and cause burning, freezing, throbbing and/or shooting pain that is often worse at night. The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body-in both hands or in both feet. Some types of peripheral neuropathy develop suddenly, while others progress more slowly over many years.

   The symptoms of peripheral neuropathy often include:

   • A sensation of wearing an invisible "glove" or "sock"
   • Burning sensation or freezing pain
   • Sharp, jabbing or electric-like pain
   • Extreme sensitivity to touch
   • Difficulty sleeping because of feet and leg pain
   • Loss of balance and coordination
   • Muscle weakness
   • Difficulty walking or moving the arms
   • Unusual sweating
   • Abnormalities in blood pressure or pulse

   The symptoms of peripheral neuropathy may depend on which of the three types of peripheral nerves (motor, sensory and autonomic) have been damaged. Some neuropathies affect all three types of nerves, while others involve only one or two.

   Motor nerves send impulses from the brain and spinal cord to all of the muscles in the body. This permits people to do activities like walking, catching a baseball, or moving the fingers to pick something up. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps, and spasms.

   Sensory nerves send messages in the other direction-from the muscles back to the spinal cord and the brain. Special sensors in the skin and deep inside the body help people identify if an object is sharp, rough, or smooth, if it's hot or cold, or if a body part is still or in motion. Sensory nerve damage often results in tingling, numbness, pain, and extreme sensitivity to touch.

   Autonomic nerves control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion, and sweating. When the autonomic nerves are damaged, a person's heart may beat faster or slower. He or she may get dizzy when standing up, sweat excessively, or have difficulty sweating at all. In addition, autonomic nerve damage may result in difficulty swallowing, nausea, vomiting, diarrhea or constipation, problems with urination, abnormal pupil size, and sexual dysfunction.

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3. What is the difference between polyneuropathy and mononeuropathy?

   Peripheral neuropathy can affect multiple nerves (polyneuropathy) or only one nerve or nerve group (mononeuropathy) at a time.

   Mononeuropathy is usually the result of damage to a single nerve or nerve group by trauma, injury, local compression, prolonged pressure, or inflammation. Examples include:
   
   

   • Carpal tunnel syndrome (a painful wrist and hand disorder often associated with repetitive tasks on a computer keyboard)
   • Bell's palsy (a facial nerve disorder)

   The majority of people, however, suffer from polyneuropathy, an umbrella term for damage involving many nerves at the same time.

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4. My 92-year-old mother began developing symptoms of peripheral neuropathy in her late 60s; my symptoms began in my mid-40s. I was told this could be an inherited disease. Is this correct?

Peripheral neuropathy is a general term for disorders of the peripheral nerves (the nerves connecting the brain and spinal cord to the rest of the body) - it is not a single disease. Some forms of peripheral neuropathy, e.g., Charcot-Marie-Tooth disease, are considered inherited diseases, that is, passed from parent to child. For many other peripheral nerve disorders, people may have a 'genetic predisposition' that makes them more likely to develop symptoms - similar to being at risk for heart disease or high blood pressure.

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5. I was diagnosed with peripheral neuropathy last year. I am not diabetic. Although I have seen several doctors, so far they have not found a cause. Can you reverse the effects of peripheral neuropathy or, at least, stop it from getting worse?

Peripheral neuropathy is a general term for disorders of the peripheral nerves (the nerves connecting the brain and spinal cord to the rest of the body) - it is not a single disease. Peripheral neuropathy frequently is a complication of another condition such as diabetes, inflammation, infections or autoimmune diseases, hereditary disorders, poor nutrition, kidney failure, chronic alcoholism, or as a side effect of certain medications - especially those used to treat cancer and HIV/AIDS. In these cases, doctors start by treating the underyling condition that may be contributing to the problem.

In some cases, however, even with extensive evaluation, the cause of a person's peripheral neuropathy remains unknown - this is called idiopathic neuropathy. When a cause is unknown, doctors work at treating the symptoms, since you cannot stop progression or reverse the effects when you don't know the cause. The Center for Peripheral Neuropathy is actively involved in research to find the possible causes and eventual cures for peripheral neuropathy.

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6. Can I participate in a clinical trial for peripheral neuropathy at the Center?

You can find specific information about clinical trials for peripheral neuropathy at the University of Chicago on our website. Previous clinical trials have tested the safety and effectiveness of new medications to treat pain associated with diabetic neuropathy. For information about clinical trials at other locations around the country, click on the National Clinical Trials page.

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7. What role does celiac disease (gluten sensitivity) play in peripheral neuropathy?

Celiac disease, a digestive disease that damages the small intestine and interferes with absorption of nutrients from food, can be associated with peripheral neuropathy, along with other disorders. People with celiac disease cannot tolerate a protein called gluten, which is found in wheat, rye and barley. It is an inherited condition that is believed to be significantly under-diagnosed in the United States.

For people who are genetically susceptible to celiac disease, gluten can trigger an autoimmune reaction in the intestines, which causes a variety of gastrointestinal symptoms and prevents the proper absorption of food and nutrients. A recent study found that some people with celiac disease had neuropathic symptoms before the gastrointestinal symptoms of celiac disease appeared.

The University of Chicago Hospitals is one of the only medical centers in the Midwest to have a Celiac Disease Program. For more information, click on How Can I Find Out If I Have Celiac Disease? (pdf* file) and Celiac Disease: Myths and Facts (pdf* file). Each October, the University of Chicago Hosptials conducts a free, one-day celiac disease screening for at-risk individuals. To make a reservation or for more information, call 773.702.7593.

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8. What is pre-diabetes? Can that cause peripheral neuropathy?

It is well-known that diabetic patients frequently develop peripheral neuropathy. Today, doctors are exploring a link between peripheral neuropathy and pre-diabetes (also known as impaired glucose tolerance or IGT). An estimated 20 million people in the US have what is being called "pre-diabetes" or "borderline diabetes" — a condition where the body has higher than normal blood sugar levels, but not high enough to be diagnosed as true diabetes. If left untreated, people with pre-diabetes are at risk of developing type 2 diabetes, heart disease, and nerve damage (which could result in peripheral neuropathy.)

People with pre-diabetes often have no symptoms. People who actually have diabetes-and who therefore are at greater risk of developing peripheral neuropathy-often don't realize it because the symptoms of diabetes (frequent urination, constant thirst, blurred vision, fatigue, cuts and bruises that heal slowly, and tingling or numbness in the hands or feet) come on so gradually. You might want to consider being screened for pre-diabetes if you are over the age of 45, overweight and not physically active, have a family history of diabetes, and belong to an 'at-risk' ethnic or minority group.

The good news is that studies show that with modest weight loss (5 - 10% of total body weight) and increased moderate physical activity, such as walking 30 minutes a day, five days a week, you can reduce your risk of developing type 2 diabetes by 58%.

For more information about pre-diabetes and diabetes, visit the National Diabetes Information Clearinghouse (NDIC) website.

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9. How did the Center for Peripheral Neuropathy start?

The Center for Peripheral Neuropathy was established in 2001.

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Research Questions

1. What type of research is being done at the Center for Peripheral Neuropathy?

   Researchers at the Center for Peripheral Neuropathy are at the forefront of scientific and clinical research aimed at identifying causes, developing treatments, and finding cures for peripheral nerve disorders.

   Dr. Brian Popko, director of the Center for Peripheral Neuropathy, leads one of six labs investigating the molecular and genetic causes of neurological disorders. His lab studies mice with neurological problems that mirror those of humans, in order to find the underlying causes of peripheral nerve disorders. Researchers study mouse models because mice have a nervous system that is very similar to that of humans, and the animals can be studied in greater detail and followed more closely than humans. Discovering the primary cause of these neurological disorders leads the way to developing therapies and potential cures.

   Clinical research is also an important part of the Center. Previous clinical trials have tested the safety and effectiveness of new medications used to treat pain associated with diabetic neuropathy.

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2. How can I support the Center's research efforts?

   To send a tax-deductible donation by mail or fax, download this form (54k pdf* file) and send your check, payable to the Center for Peripheral Neuropathy, to:

   The Center for Peripheral Neuropathy
   The University of Chicago
   5841 S. Maryland Ave., MC 2030
   Chicago, IL 60637
   Fax: 773.702.5577

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Clinical Appointment Questions

1. How can I make an appointment with one of the neurologists in the Center for Peripheral Neuropathy Clinic? Do I need a referral from my doctor?

   Patients may contact the Peripheral Neuropathy Clinic for an appointment either on their own or through the referral of their physician. To schedule an appointment, call 773-702-5659. For additional information, read about scheduling appointments.

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2. Will my insurance or healthcare plan cover the costs?

   To find out which insurance plans are accepted, read the page about Managed Care Contracts. If you don't see your plan listed, or if you have any questions about payment, please call HealthLink at 1-888-UCH-0200 or email healthlink@uchospitals.edu.

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3. Where is the Center for Peripheral Neuropathy Clinic located?

   The Peripheral Neuropathy Clinic is located in the Duchossois Center for Advanced Medicine (5758 S. Maryland Ave., Chicago IL), a part of the University of Chicago Hospitals, on the Hyde Park campus of the University of Chicago, a few miles south of downtown Chicago. For additional information, read Directions to the University of Chicago Hospitals and Parking (pdf* file).

   The administrative section of the Center for Peripheral Neuropathy is located in Abbott Memorial Hall, on the University of Chicago campus. Our mailing address is:

   Center for Peripheral Neuropathy
   The University of Chicago
   5841 S. Maryland Ave., MC 2030
   Chicago, IL 60637
   

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4. What will happen during my first appointment at the Center Clinic?

   The doctor will conduct a neurological exam to help provide a diagnosis. A neurological exam may include the following:

   • Medical and family history: questions concerning your symptoms and condition
   • An evaluation of neurological function
   • Diagnostic tests including blood tests and electrodiagnostic tests

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5. Why does the doctor recommend electrodiagnostic tests (EMG or NCV)?

   Electrodiagnostic tests measure the electrical activity of muscles and nerves. By measuring the electrical activity they are able to determine if there is nerve damage, the cause of the damage, and if the damaged nerves are responding to treatment. Two common electrodiagnostic tests are:

   • Electromyography (EMG)
   • Nerve Conduction Velocity (NCV)

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6. I live three hours away from the University of Chicago Hospitals. When I come for my appointment, can all of the tests be done on-site, on the same day? Do I have to return for another appointment to get the results?

   Although every patient is handled on an individual basis, the physicians in the Peripheral Neuropathy Clinic attempt to perform most diagnostic tests on the same day. If you are coming from some distance, explain your situation to the person making the appointment and ask that the NCV (nerve conduction velocity test) be pre-scheduled, so that the results are available that day. Please understand that, unfortunately, it is not always possible to accommodate patients with availability of the NCV on the same day that they are seen. Blood tests can always be drawn the same day that the patient is seen, however, it will always take longer to get the results of blood tests. Sometimes results can be discussed over the phone — sometimes a second visit is advised.

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7. I do not live in the Chicagoland area. Where can I stay when I come for my appointment?

   Patients and their families may receive a discount at many Chicago hotels. You can find a complete listing on our hotel page or by calling HealthLink at 1-888-UCH-0200.

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8. I have had several diagnostic tests done elsewhere. Do I need to have them done again at the Center for Peripheral Neuropathy Clinic?

   Sometimes diagnostic tests done previously are repeated here, and sometimes they aren't - it depends on how long ago they were done and whether the doctors feel the tests were done in a way that would give the most accurate results.

   If your visit is for a second opinion or on a physician's referral, you should bring medical records, X-rays, results from lab tests, pathology slides, or other materials. Your physician may have sent these to us already — be sure to ask your doctor before your visit here.

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9. My father has severe pain and weakness and would like to see a specialist to get a second opinion. However, he lives in another state and cannot travel to Chicago. Can you refer him to a physician who is knowledgeable about peripheral neuropathy?

   The Neuropathy Association in New York maintains a database of doctors throughout the US and in several other countries who have expressed a special interest in treating peripheral neuropathy. You can find more information at http://www.neuropathy.org/site/PageServer?pagename=physician_index.

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