Sunday, June 14, 2009

New poll confirms Neuropathy hits millions in there prime

First-Time National Poll Confirms Neuropathy Hits Millions In Their PrimeData shows 82% of patients have neuropathy onset during their 30s-60s
New York, May 13, 2009—A new national Neuropathy Association poll of peripheral neuropathy patients finds that the majority of respondents had their neurological disease begin during their prime adult years, with 82% experiencing neuropathy’s onset between the ages of 30-69. “Peripheral neuropathy does not discriminate: it affects all ages, all types of people,” observes Tina Tockarshewsky, president and CEO of The Neuropathy Association. “However, our survey shows neuropathy strikes most patients in the prime of their lives, when they are building their families, careers, and futures.”“With the potential for millions of active adults to suffer from progressive chronic pain and possible disability, we are leaving the U.S. 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. Neuropathy is taking an immeasurable toll on Americans’ quality of life and generating extreme social and medical cost burdens,” adds Tockarshewsky.For nearly 15 years, The Neuropathy Association has been an active national patient advocacy organization working to change misconceptions about this progressive, chronic neurological disease. May 11-15 marks the fifth annual National Neuropathy Week, an event launched by The Neuropathy Association to raise awareness about neuropathy and its warning signs. Peripheral neuropathy, or “nerve damage,” impacts over 20 million Americans, making it one of the most common chronic diseases in the U.S. Neuropathy results from injury to the peripheral nerves, disrupting the body’s ability to communicate with its muscles, organs and tissues. Most Americans do not recognize neuropathy’s symptoms, which include weakness, numbness, tingling and pain, especially in the hands and feet. If experiencing these symptoms, patients need to consult with a neurologist. With early diagnosis, neuropathy can often be controlled and some types can be cured. If ignored, symptoms can intensify to loss of sensation, unremitting pain, or disability. Too often neuropathy is discovered only after causing irreversible nerve damage.The Neuropathy Association’s national survey of 1,300 patients asked about the age when their neuropathy began, revealing:- 3 percent had their illness start in their 20s;- 27 percent had their illness start in their 30s-40s;- 55 percent had their illness start in their 50s-60s; and- 15 percent had their illness start in their 70s-80s.This survey was complemented by a second national survey which asked 1,000 patients to identify their specific type of neuropathy. While there are over 100 known types of peripheral neuropathy, 52% of the patients responded their neuropathy was “idiopathic,” meaning of no known cause. Other types noted were:- 15 percent had diabetic neuropathy;- 12 percent had an autoimmune-related neuropathy;- 6 percent had a hereditary neuropathy;- 4 percent had a chemotherapy-related neuropathy;- 4 percent had a trauma-induced neuropathy; and- 7 percent had a neuropathy related to other sources such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases such as HIV or Lyme.“Neuropathy is often misrepresented as only being diabetes-related. However, this survey demonstrates that for every diabetic neuropathy patient, there are at least six more patients suffering with various neuropathies, including some for which there is no known cause and, consequently, no known treatment. Right now, we see great hope in our research community: we are on the verge of real progress in many areas. However, neither funding nor public attention is being directed towards getting these researchers across the finish line,” notes Dr. Thomas H. Brannagan, III, medical advisor for The Neuropathy Association.“The neuropathy patient community has only three FDA-approved treatments for three types of neuropathy, faces increasing Medicare reimbursement restrictions, and receives inadequate levels of federal research funding. With millions suffering, this is an unacceptable public health state of affairs,” Tockarshewsky emphasizes. “Supporting neuropathy research would bring better treatment options and cures to millions of neuropathy patients. Doing so would also help a range of other patients, including those with multiple sclerosis, muscular dystrophy and cancer. Americans must demand cures for neuropathy.”About The Neuropathy AssociationThe Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support and education, advocating for patient’s interests, and promoting research into the causes of and cures for peripheral neuropathies. The Association currently has twelve neuropathy medical Centers of Excellence at major university hospitals across the country in order to serve patients with neuropathy, provide treatment and conduct research, including: - Banner Good Samaritan Medical Center (Phoenix, AZ)- University of California at San Francisco - Good Samaritan Hospital (Los Angeles, CA)- University of Miami Miller School of Medicine (Miami, FL)- University of Florida and Shands Jacksonville - University of Michigan (Ann Arbor, MI)- Saint Louis University (St. Louis, MO)- Columbia University Medical Center (New York, NY)- Weill Cornell Medical College of Cornell University (New York, NY)- Ohio State University (Columbus, OH)- University of Kansas (Kansas City, KS)- University of Utah (Salt Lake City, UT)The organization works to connect patients with one another through its active network of members, regional chapters, medical Centers of Excellence and 135 patient support groups. For more information, please visit www.neuropathy.org.


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Chronic Auto-Immune Disease CIDP Diagnosis

How A Chronic Auto-Immune Disease Is Diagnosed

Jun 10th, 2009

New research from Jefferson Hospital for Neuroscience (JHN) may redefine how Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is diagnosed. Eduardo De Sousa, M.D., assistant professor of Neurology at Jefferson Medical College of Thomas Jefferson University, and director of the Electrodiagnostic Neuromuscular Lab at JHN, led the study which looked at the number of demyelinating features that are needed to differentiate between CIDP, Amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) and diabetic neuropathy.
His research suggests a minimum number of three demyelinating features can be used to positively identify CIDP in a patient. CIDP is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. It affects about 50,000 people in the United States. The study, available in the current edition of the Journal of Clinical Neuromuscular Disease, may help doctors more effectively diagnose and treat CIDP.
Currently, to make a diagnosis of CIDP, patients undergo nerve conduction studies to determine the number and severity of abnormalities on electrodiagnostic tests. Patients with a specific pattern and number of abnormalities, also know as demyelinating findings, during these studies are determined to have CIDP.
The study involved 26 CIDP patients and a control group of 21 patients, nine ALS patients and 12 diabetic neuropathy patients. The researchers judged the number of demyelinating findings in the CIDP patients that responded to the treatment. They then analyzed the number of features to make the screenings more sensitive. Their findings suggest that with three demyelinating features significantly increased the specificity of the diagnosis of CIDP, but in exchange, the sensitivity was reduced; two features produced a less specific pattern making it difficult to distinguish between CIDP, ALS or diabetic neuropathy, but increased the sensitivity of the test allowing to diagnose patients earlier on the course of their disease; and one feature was determined to have low specificity for the diagnosis of CIDP.
“This is a clinically significant finding that may help doctors screen potential CIDP patients,” said Dr. De Sousa.” In determining the number of demyelinating findings needed to define CIDP, doctors may be able to make a diagnosis sooner allowing for a targeted treatment to begin quicker, preventing further disability.”
CIDP can occur at any age, but is most common in the elderly and in men. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes, fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome, but instead of having rapid onset, CIDP has a more protracted chronic course.
Treatment for CIDP includes corticosteroids such as prednisone, plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg). IVIg may be used even as a first-line therapy. Immunosuppressant drug therapy may be effective in patients who fail standard therapy. Physiotherapy may improve muscle strength, balance, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.
Source: Thomas Jefferson University Hospital

Article approved by David Hines

Patient/Advocate for Neuropathy

Saturday, June 13, 2009

IVIg infusion

Monday, June 8, 2009

Me showing off my sexy legs!

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Neuropathy advocacy includes political advocacy

Get involved and help us fight the good fight! I am native Californian and I want my state back! Meg Whitman is the right person for the job! Lets shake this state up and get some one who will balance the budget. Send Arnold packing. I have never seen a state that took from the disabled. I am a disabled American and I'm
not going to sit around and take it anymore. Get involved! Lets shake it up!

John McCain endorses Meg Whitman for California Governor 2010

Meg Whitman for Governor 2010!

Meg Whitman for Governor of Calif in 2010. This was taken in my neck of the woods.


">We stopped to take a pic in front of the wind turbines on I-1... on Twitpic

Meg Whitman for Governor 2010!

It was warm today in Redding, and I loved the area. Met with ... on Twitpic

Meg Whitman for Governor 2010!

Campaign HQ opens today in Silicon Valley. Exactly one year u... on Twitpic

Beat Neuropathy


Life is a chore after a chore!

I can't believe it has been so long since my last post. Well a lot has happen. I'm on my private insurance from my former employer because of the federal and state (Calif) COBRA laws. Well, my former employer has decided to change insurance companys from Pacific Care to Aenta. That meens I have to change doctors. I have to get back my premiums for July and August. They are paid 3 months in advance. So, that is what i'm going to try and get done this week.