A recent national poll found that persons with neuropathy face delayed diagnoses, inadequate pain care, and distressing life changes due to their painful disorders. Peripheral neuropathy affects nearly 7% of Americans and from 2% to 8% of populations worldwide. The many types of neuropathy pose diverse challenges for patients, their families, and healthcare providers, yet relatively few resources are devoted to research and treatment of these disorders.
More than 1,900 patients responded to an online survey recently conducted by The Neuropathy Association [full results here]. A majority of survey participants indicated they experienced an extended period of time from symptom onset to diagnosis of their neurological disease — taking more than one year in 75% of cases, and more than 5 years for 20% of patients.
After delays in diagnosis, nearly half of patients (49%) were finally told that their neuropathy was “idiopathic” (due to unknown causes). The second most common type, at 15%, was prediabetic/diabetic neuropathy. Other types listed in the survey included: autoimmune-related (10.7%), hereditary (6.1%), and cancer or chemotherapy-related (4.7%). To lesser extents, respondents indicated entrapment or trauma-associated neuropathy, and those related to toxins, nutritional deficiencies, gastrointestinal disorders, metabolic diseases, or infections (including Lyme disease and HIV/AIDS). In all, there are more than 100 known types of neuropathy, according to the Neuropathy Association.
Nearly 3 in 10 respondents (29.9%) said they receive no treatments for pain relief, and the remainder indicated that they currently use multiple therapies, including:
- medications, such as pregabalin, gabapentin, duloxetine, amitriptyline, or opioids — 66%,
- complementary therapies, including vitamins, acupuncture, or TENS units — 22.7%,
- topical pain relievers, such as lidocaine or capsaicin — 16.5%,
- rehabilitation therapy, including physical or occupational therapy — 10.5%,
- intravenous immunoglobulin or plasmapheresis — 4.6%,
- interventional therapies, including anesthetic blocks, intrathecal pumps, or spinal neurostimulators — 4.1%.
Respondents indicated that they face many challenges on a daily basis in coping with their neuropathy and associated pain. The top 5 included: adjusting to disabling effects (51.4%), finding strength and energy for daily activities (49.7%), staying positive and hopeful (48%), describing the ordeal to family and friends (45.8%), and getting necessary rest and sleep (44.6%).
COMMENTARY: This was a relatively small and nonrandom survey, with possible selection bias, since participants volunteered to respond online. However, it provides some important insights that will hopefully be confirmed and expanded in larger assessments.
According to background information from The Neuropathy Association [website here], peripheral neuropathy affects more than 20 million (or 1 in 15) Americans, making it one of the most common chronic diseases and a leading cause of adult disability. Early warning signs may include pain, numbness, tingling, and/or weakness. With early diagnosis, neuropathy can often be controlled, but, if ignored, symptoms can intensify to persistent weakness, loss of sensation, chronic pain and/or disability.
“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,” observes Tina Tockarshewsky, president and CEO of The Neuropathy Association.
“Our community is gravely underserved with treatments to bring relief, and the available treatments are not always a perfect fit, leaving patients to try a variety of approaches to find help,” she emphasizes. “We have only 7 FDA-indicated treatments: 1 for CIDP [chronic inflammatory demyelinating polyneuropathy, an autoimmune form of neuropathy], the remainder are for diabetic neuropathic pain and post-herpetic neuralgia; this addresses only about a third of our patients — which begs the question: what are the other two thirds supposed to do for their suffering?”
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