A national survey of peripheral neuropathy patients found that over half took at least two years before they received the right diagnosis from their doctors. Many also receive inadequate pain care and go through distressing life changes.
Peripheral neuropathy affects over 20 million Americans, making it one of the most common chronic diseases and a leading cause of adult disability. Neuropathy results from injury to the peripheral nerves, which disrupts the body’s ability to communicate with muscles, organs, and tissues. With early diagnosis, symptoms can often be controlled. A delay in diagnosis and treatment could lead to loss of sensation, weakness, chronic pain, and disability.
The Neuropathy Association surveyed nearly two thousand patients, asking them about the length of time between the first onset of symptoms and a confirmed diagnosis of neuropathy. Fifty seven percent waited two or more years before getting the right diagnosis. Nearly one-third were receiving no treatment for their pain.
“While early intervention and treatment can be critical to slowing disease progression, our biggest challenge is many Americans still do not know about neuropathy, are unaware they have it, and do not recognize warning signs. Too often neuropathy is discovered after irreversible nerve damage has occurred.” said Dr. Thomas H. Brannagan, III, medical advisor for The Neuropathy Association.
Nearly half (49%) of the patients were told their neuropathy is “idiopathic” — of an unknown cause. Fifteen percent of those surveyed have diabetic neuropathy, the second most common cause. Other types of neuropathy can be caused by accident or trauma, cancer, chemotherapy, toxins, infectious disease and HIV/AIDS. There are over 100 known forms of neuropathy.
“Neuropathy is often misrepresented as only being diabetes-related. We know that diabetic neuropathy typically represents a third of the neuropathy patient community; yet, close to half of the patients receive an idiopathic neuropathy diagnosis. This survey supports the fact that confirming a diagnosis, when possible, requires physicians and patients working in partnership for a thorough evaluation to identify the possible source of the nerve damage,” says Brannagan.
The survey found a wide range of treatments being used for neuropathy, with many patients using multiple therapies to control their symptoms.
- 66% Use pain medications such as pregabalin, gabapentin, duloxetine and opioids.
- 29.9% Receive no treatment for pain.
- 22.7% Use complementary therapies such as vitamins, acupuncture and TENS units.
- 16.5% Use topical pain relievers such as lidocaine or capsaicin.
- 10.5% Receive physical therapy or occupational therapy.
- 4.6% Receive intravenous immunoglobulin or plasmapherisis.
- 4.1% Interventional therapies such as local anesthetic blocks and spinal neurostimulators.
“With the potential for millions of Americans to suffer from neuropathy’s progressive chronic pain and disability, the U.S. is currently unprepared to face a major public health crisis if healthcare providers, the media, and public policy officials continue to ignore the inadequacy of medical resources and research funding for neuropathy,” said Tina Tockarshewsky, president and CEO of The Neuropathy Association.
This week is the eighth annual Neuropathy Awareness Week, an event launched by the Association to promote greater attention to and prevention of neuropathy.