The Neuropathy summit

"Announcing the 2010 Neuropathy Summit in Washington, D.C.!
With peripheral neuropathy affecting over 20 Million Americans, it’s a puzzle why this disease still remains one of the least recognized epidemics in the U.S. today. Our groundbreaking 2010 Neuropathy Summit is your opportunity to help change this dynamic. The Neuropathy Association is proud to be hosting this first of its kind 2010 Neuropathy Summit, which features back-to-back patient and physician conferences in Washington, D.C. on December 3-5, 2010.
As a neuropathy patient, caregiver, family member, or physician, the 2010 Neuropathy Summit offers you a rare opportunity to participate on a national level along with health care professionals, clinical researchers, policy makers and many other industry representatives. Together, we can begin to advance our understanding of neuropathy, create momentum for better patient treatments, and, ultimately, cures.
Everyone who’s concerned about improving health care and the quality of life for neuropathy patients should plan on attending."

Neuropathy Advocate and Patient Update

Hi everyone, I got to thanking about my life changes since I was dx. I now love helping others with there neuropathy. I belong to The Neuropathy Association. I went to Las Vegas to support my friend Michelle from the Alliance for Plasma Therapy. It was a great successful fund raiser. Last June I was able to go to Sacramento for a Neuropathy Action Day and it to was a huge success. Now this coming Dec 3- 5. I will be able to go to Washington D.C. for a Neuropathy Summit where Doctors and Patients alike to meet together and co-mingle and share
each other's thought and opinions.

In 2008 I started up a neuropathy support group in Murrietta, Calif. and then another in Palm Springs, Calif. Where we enjoy over 60 members. I feel its time to start another group and I've decided on the Loma Linda Univ. Medical school and hospital area. We will be able to use a room at the univ. My neurologist works out of the university medical center and that was a big plus.

Thank you,
David Hines
Patient and Advocate

Neuropathy Book

I'm getting so excited....I met a lady on facebook who was an author and she is introducing me to her publisher. I can hardly sleep. The market for neuropathy books is wide open. I can count the books on neuropathy on one hand. My email is: david-hines@hotmail.comj and on my signature there are a few links to some of my best web sites. Check them out. Please leave me a comment on this blog. Give me suggestions on the book and what you want addressed.

Thanks,
David

Painful day

I again am sorry for not posting on a regular basis. I met a friend that is an author and is hooking me up with a publisher HOPEfully now I can get busy writing about Neuropathy and how it affects millions of folks...stay tuned!

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Neuropathy news etc...It's been a while!

I got a new phone its a htc evo with android. I never thought
such a thing was created. I'm getting a big step forward with a book thanks to Tracy on fb. So much more later.

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Desert Neuropathy Support Group

I am sorry for not posting more often. I have recently been busy starting more blogs including my support group blog and web site. The web address is www.DesertNeuropathysupportgroup.org and our blog site is www.Desertneuropathysupportgroup.blogspot.com

For now I hope you find out more about me and the others. More resources is www.foundationforpn.org www.neuropathy.org My personal 24/7 phone number is (760) 288-6467 and my email is david-hines@hotmail.com. www.neuropathyaction.org

I look forward to meeting you or hearing from you.

Thank you,
David Hines
Neuropathy Patient, support group leader and advocate.

Find me on facebook at www.facebook.com/Hope.in.Motion4Neuropathy and twitter at www.twitter.com/cimfree

My political blog is at www.Onthepoliticalside.blogspot.com

Desert Neuropathy Support Group web site and facebook page

After moving to the desert community of Palm Springs I soon discovered I needed to start another neuropathy support group (I started the first one in Murrieta). We have been so blessed since the beginning. We now average 30-40 attendees per month and our membership role has passed the 50 person mark. I do not deserve all the credit. I have a co-leader and her name is Donna Thomas and it is her behind the scenes tireless effort that makes our group tick and keep up with the new age techno of the world wide web including our new web site and facebook page. She keeps me in line and up to date on new members and special speakers. She also takes command when I am down and out with to much pain to function and still finds time to send me encouraging emails to help lift me up when I'm knee deep in depression. Needless to say without Donna this group would not function or keep up with our exploding growth. I welcome you all to check out our web site at http://www.desertneuropathysupportgroup.org/ and our facebook page. I hope you enjoy and check back often for current info.

You make me smile

2nd Opinion for a new neurologist

I am getting to see a new neurologist Dr. Escutin from the neurology dept at Loma Linda Univ medical hospital ! I'm really looking forward to this. I really need a neurologist who knows what PN is. I will report back after my meeting with him. We must beat neuropathy !

Desert Oasis Medical group update

I received a referral from the desert oasis medical group to see the neurologist.
Dr. Young is his name and there are some members in our support group who go to him and they said they like him so that is good news and like always I will keep
you all updated.

Thank you,

David Hines
Neuropathy Patient Advocate

Ask the Doctor about Autonomic Neuropathy

Autonomic neuropathy involves damage to certain nerves that run through the peripheral nervous system. Peripheral nerves transmit electrical signals from the brain and spinal cord to and from the rest of the body. Each nerve fiber serves a dedicated function: motor nerves control movement; sensory nerves control physical sensation; and autonomic nerves transmit signals for the "automatic" functions, such as heart rate and blood pressure, which require no conscious control.

Because autonomic nerves help control virtually every organ in the body, the symptoms of autonomic neuropathy can be highly varied and widespread. Common complaints include dry eyes and mouth, reduced or excessive sweating, bloating, nausea, or episodes of diarrhea. Autonomic functions decline to some degree with normal aging.

Autonomic neuropathy can worsen, improve, or continue unchanged depending on the severity and progression of the underlying cause. The most common cause is diabetes. Severe cases of autonomic neuropathy can result from autoimmune or bone marrow disorders, certain toxins and medications, and rare genetic conditions. In some cases, no cause can be identified.

Some degree of autonomic neuropathy occurs in the majority of neuropathy cases.
Patients with neuropathy affecting their sensory nerves typically have more severe foot and lower leg involvement; the condition is often aggravated by additional autonomic impairment in affected ares-for example, coldness, loss of sweating and hair, and susceptibility to foot ulcers.

Louis H. Weimer, M.D., is co-director of Columbia Neuropathy Research Center and associate clinical professor of neurology at Columbia University in New York, NY

Medical Groups Suck!

I am pulling my hair out with the Desert Oasis Health care outfit. They are the ones who control or try and control our health care. I am at my wits end. I have been on IVIg since Dec of "07 and I told these guys that and I'm due for my next
infusion this Saturday but it is not going to happen because these idiots have
told me I have to go to THERE RHEUMATOLOGIST! What does a rheumatologist
got to do with neurological disorders? Would some one please tell me?

I don't know what else to say? Please can some one tell me what the heck is going on? Am I missing something?

Advocacy groups push for passage of Medicare Patient IVIg Access Act of 2009

Get Involved!

Anyone can be an advocate—it is easy and important. IVIG is so important to so many people, but most members of Congress do not realize how many people rely on IVIG for their health. You can change that. You can tell them how much IVIG means to your health or to your loved one’s health.

A bill has been introduced in the House of Representatives and also in the Senate to help solve the problems many Medicare beneficiaries have getting IVIG where it is best for them: the physician’s office, the home or the hospital outpatient infusion center. These bills will not become law unless Congress hears from people like you all across the country. (Note: Congress often writes laws like this for Medicare beneficiaries because the federal government pays for Medicare. However, private insurance companies often follow Medicare policy, so these bills, if passed, can help the entire IVIG community.)

It takes just a few minutes to take action. First, click on the link below to find the three members of Congress who serve you: your one representative in the House and your two Senators. Then, after reviewing the material about the bills written to solve the problems for Medicare patients on IVIG, send an email to your members of Congress.

Thank you for your efforts!

BENEFITING FROM SUPPORT GROUPS

A support group is a valuable asset in learning about your peripheral neuropathy (PN). We have well over 100 established groups across the U.S. that provide you with monthly meetings where you can meet and speak with others with PN, hear medical professionals discuss various aspects of PN, find knowledgeable doctors in the area, and ask questions that you might be unable to ask of people who do not have PN. The support group gives you an opportunity to participate on committees that help the group function. The support group is an excellent opportunity for the person who becomes the group’s leader to inform group members of the best way to get a good diagnosis by suggesting people write their medical history.

If there is no support group in your area you might think of becoming a support group leader. We are very supportive of new support group leaders, and we provide a full packet of information on setting up the group. Many groups have neurologists who will speak to the group and help the group find a local hospital which will offer a room for the meeting. Once a group has established a location in a local hospital, there are other hospital personnel who you might find to speak to the group, such as pain specialists, physical therapists and occupational therapists.
Groups usually meet for two hours once a month. Part of the time is used for support group business, part for a speaker with a Q & A session, and then the remainder for breaking into small groups to discuss problems of interest to the members. For example, a subgroup to discuss pain, a subgroup with motor problems, or a subgroup of people who want more information.

The Neuropathy Association’s Support Group Coordinator is Paul Guidos. For more information on starting or running a support group, Paul can be reached at 212-692-0664 or at supportgroups@neuropathy.org.

For general support group information, contact the Association at 212-692-0662.
And, as always, be sure to visit The Neuropathy Association’s website, www.neuropathy.org.

MANAGING YOUR OWN Neuropathy TREATMENT


Part I: BECOMING YOUR OWN BEST NEUROPATHY ADVOCATE
Since neuropathy is often a difficult disease to diagnose, it is wise to become an informed patient, gathering up as much information as possible and becoming knowledgeable about your symptoms. There are approximately 100 different types of peripheral neuropathy, and unfortunately not every neurologist is familiar with the disease, treatments and services available. Prepare yourself by reading, learning the vocabulary, accurately describing your symptoms and providing a full medical history to the neurologist. Other health providers who deal with aspects of neuropathy include pain specialists, physical and occupational therapist and podiatrists. Taking a proactive approach to your illness will help you engage more effectively with them in their efforts to treat your specific neuropathy.

Becoming Informed

Join The Neuropathy Association at 1-880-247-6968, http://www.neuropathy.org/. You can get information on neurologists and support groups in your area.
Read The Neuropathy Association’s booklets Explaining Peripheral Neuropathy, Exercising with Neuropathy, and A Guide to the Peripheral Neuropathies.
Read Numb Toes and Aching Soles and Numb Toes and Other Woes both by John Senneff and available from the Association or your public library.
Check the Internet for articles: go to a search engine (like http://www.google.com/), and type “neuropathy” in the search box
Do Your Homework as a Patient
Prepare your medical history, recording all illnesses, accidents and surgeries since childhood. Make a list of current medications and dosages to share with physician.
Bring along prior EMGs (Electromyogram), NCVs (Nerve Conduction Velocity), skin or nerve biopsies, blood tests, and any other tests from a previous neurologist.
Write down the important questions you want to ask the doctor. Bring along a family member or friend to listen to the doctor, and to record answers to your questions. They can also help you make sure you covered everything on that list.
Always get copies of previous evaluations or summaries, and tests you have taken so you will have a complete medical history if you change doctors.
When medications are prescribed, check on the Internet for drug interactions and drug side effects by again using a search engine like http://www.google.com/ to look up your medications. Also consult with your pharmacist and read through any inserts provided with your medications.
If you are not satisfied, you can get another opinion from a different neurologist.
Ask your physician or the Association about clinical trials where new medications are tested.
Join, or start a support group where you can exchange information with others.
Remember, you are not alone in this! There are plenty of resources out there to help you, and they will ultimately better serve you if you help yourself!

ABOUT peripheral NEUROPATHY: FACTS

Peripheral neuropathy is a disorder of the peripheral nerves—the motor, sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. It usually affects the hands and feet, causing weakness, numbness, tingling and pain. Peripheral neuropathy’s course is variable; it can come and go, slowly progressing over many years, or it can become severe and debilitating. However, if diagnosed early, peripheral neuropathy can often be controlled.
Why Have We Heard So Little About Peripheral Neuropathy? Is It A New Disease?
Peripheral neuropathy is common. It is estimated that upwards of 20 million Americans suffer from this illness. It can occur at any age, but is more common among older adults. A l999 survey found that 8-9% of Medicare recipients have peripheral neuropathy as their primary or secondary diagnosis. The annual cost to Medicare exceeds $3.5 billion.
Peripheral neuropathy has always been present, but has not received much attention. Its extent and importance have not yet been adequately recognized. It is apt to be misdiagnosed, or thought to be merely a side effect of another disease like diabetes or cancer or kidney failure. The development of new therapies has unfortunately been slow and under funded.
What Causes Peripheral Neuropathy?
There are many causes of neuropathy. Approximately 30% of neuropathies are “idiopathic,” or of an unknown cause. In another 30% of cases, the cause is diabetes. Other neuropathy causes include autoimmune disorders, tumors, heredity, nutritional imbalances, infections or toxins.
Can Peripheral Neuropathy Be Cured?
Some types of peripheral neuropathy can be cured, however, most cannot. However, many can be helped. Therapy is directed at treating the underlying disease and at improving the symptoms with the right medications. An experienced neurologist can help patients feel more comfortable, and their quality of life can be greatly improved. But it is extremely important to get to an experienced neurologist as soon as you notice the symptoms before the disease has a chance to cause too much permanent damage

Peripheral Neuropathy Awareness & Attention

ABOUT peripheral NEUROPATHY: AWARENESS AND ATTENTION
The National Institutes of Health spent $35 million in 2004 and $29 million in 2005 on peripheral neuropathy research. NIH funding for neuropathy research lags far behind its investment in other neurological disorders. For other disorders with a similar range of disability (multiple sclerosis and epilepsy), the NIH expenditure per patient ratio is approximately 200 times greater than it is for neuropathy.
Too often, patients are told there is nothing that can be done for them, they will just have to live with it. Some patients are even told it is all in their heads, that they are imagining it. People who are suffering with the disorder often feel they have nowhere to turn. They feel isolated and alone. Even their families do not understand what they are going through and start to doubt them. The Neuropathy Association is working hard to change these perceptions through its awareness-building and outreach activities.
Public awareness of this illness is unfortunately low. A 1999 awareness survey reported that only 7% of all adults in the U.S. know about neuropathy. And, yet, it is estimated that up to 20 million Americans, whether they know it or not, currently have some type of neuropathy.

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

Beat Neuropathy