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Neuropathy Diagnosis Obstacles Damaging to Patients' Health

For National Neuropathy Awareness Week (May 13-17), The Neuropathy Association and the Hereditary Neuropathy Foundation Call Attention to the Diagnostic Challenges Hurting Millions of Neuropathy Patients.

May 16, 2013

Continued lack of peripheral neuropathy awareness combined with Medicare reimbursement cuts for diagnostic tools are causing major impediments to neuropathy epidemic prevention, patient care, and treatments according to The Neuropathy Association and the Hereditary Neuropathy Foundation. The two organizations are using national Neuropathy Awareness Week (May 13-17) to highlight the diagnostic challenges facing patients with all forms of peripheral neuropathy, which have no disease-modifying treatments or cures. Early and appropriate neuropathy diagnosis is key to prevention and providing symptom management to restore quality of life and stem neuropathy's progression.

 

"Without appropriate diagnostic tools, 
neuropathy patients face years of 
misdiagnosis and possible 
mistreatment while irreparable 
nerve damage continues."


Peripheral neuropathy, or “peripheral nerve damage,” impacts well over 20 million Americans (at least 1 in 15), making it one of the most common chronic diseases and a leading cause of adult disability. Neuropathy disrupts the body’s ability to communicate with its muscles, organs, and tissues. Charcot-Marie-Tooth (CMT), a hereditary group of neurodegenerative conditions degrading the nerves in the hands, arms, feet, and legs with crippling results, usually begins in childhood and impacts over 150,000 Americans.

Of the over 100 known types of neuropathy, diabetic neuropathy represents over a third of all neuropathies, making diabetes the leading cause. A third of neuropathies are “idiopathic” (unknown cause). Other neuropathies include hereditary, autoimmune-related, cancer or chemotherapy-related, entrapment or trauma-related, and neuropathies due to causes such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases (including Lyme and HIV/AIDS).

Despite neuropathy’s prevalence, lack of awareness and a greater understanding of neuropathy’s complexities by the public as well as health care practitioners cause most patients to encounter time delays and a high probability of misdiagnosis and mistreatment before reaching a confirmed neuropathy diagnosis. A 2012 poll by The Neuropathy Association showed patients face a timeline between symptom onset and actual diagnosis lasting five or more years for almost a third (29.4.5%) of patients polled, a period of time during which irreparable nerve damage continued and access to appropriate care was impeded.

Because there are no cures, accurate diagnosis guides treatment path by assessing causes and nerve involvement; early diagnosis may be preventative. Needle electromyography tests (EMG) and nerve conduction studies (NCS) are neuropathy’s primary diagnostic tools, which can lead to genetic testing especially in cases of CMT. However, beginning January 1, 2013, Medicare reimbursement payments to physicians for EMGs and nerve conduction studies (NCS) were severely reduced by 30%-70%.

“This current diagnostic environment is a crisis unlike any we have ever known before—and is about to get worse,” shares Tina Tockarshewsky, president and CEO of The Neuropathy Association. “Neuromuscular physicians are specialists who are trained in diseases like the peripheral neuropathies. As a result of the recent Medicare cuts, The Neuropathy Association is hearing that neuromuscular physicians—specialists who work with neuropathy patients—are facing difficulties in practicing neuromuscular medicine, and have begun to stop seeing Medicare patients”

“Without increasing awareness and removing impediments to care, early diagnoses will be reduced and misdiagnoses will increase,” concurs Allison Moore, CEO of the Hereditary Neuropathy Foundation. “Most health care practitioners do not have a basic understanding of the scope of the neuropathies, the diagnostic tools available, and the treatment protocols dependent on the type of neuropathy. Although it took years for me to get the diagnosis of CMT, once I did, it changed my own path of care—and, it enabled me to get appropriate testing done early for my own children to promote their health and well-being.”

May 13 - 17 is the ninth annual Neuropathy Awareness Week, an event launched by The Neuropathy Association to promote greater attention to and prevention of this growing national epidemic. With early diagnosis, neuropathy can often be controlled and quality of life restored. If ignored, symptoms can intensify to loss of sensation, weakness, unremitting pain, and/or disability.

About The Neuropathy Association

 Founded in 1995, The Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support, education, advocacy, and the promotion of research into the causes of and cures for all forms of peripheral neuropathy through its nationwide network of members, regional chapters, 15 medical Centers of Excellence, and 150 patient support groups. For more information, visit http://www.neuropathy.org.

About the Hereditary Neuropathy Foundation

Founded in 2001, the Hereditary Neuropathy Foundation is the leading national organization dedicated to finding treatments that will halt, reverse and cure Charcot-Marie-Tooth (CMT) through their Therapeutic Research in Accelerated Discovery (TRIAD) program, an innovative model that brings together academia, government, and industry. The collaborative translational model ensures the sharing of information among hand-picked partners that have one goal in mind: cure CMT. For more information, visit http://www.hnf-cure.org or our Facebook page.

 

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