Praise Him in this storm

Praise Him in this storm
by Casting Crowns

I was sure by nowThat You would have reached downAnd wiped our tears awayStepped in and saved the dayBut once again, I say "Amen", and it's still rainingAs the thunder rollsI barely hear Your whisper through the rain"I'm with you"And as You mercy fallsI raise my hands and praise the God who givesAnd takes awayI'll praise You in this stormAnd I will life my handsFor You are who You areNo matter where I amEvery tear I've criedYou hold in Your handYou never left my sideAnd though my heart is tornI will praise You in this stormI remember whenI stumbled in the windYou heard my cryYou raised me up againMy strength is almost goneHow can I carry onIf I can't find YouAs the thunder rollsI barely hear You whisper through the rain"I'm with you"And as Your mercy fallsI raise my hands and praise the God who givesAnd takes awayI lift my eyes unto the hillsWhere does my help come from?My help comes from the LordThe Maker of Heaven and Earth

Praise Him through this storm

Hi everyone! I wish I would get to post on a daily basis but I skip around to different sites and now it's places like FaceBook and Twitter that are
wonderful networking sites for neuropathy and other reasons. I have met so many people on both who have one or another different types of neuropathies. As I type this I'm listening to a band called Casting Crowns a gospel group who have songs with great words that can be applied to different areas of my life. I will be 50 in January and my life now is wrapped around my advocating for myself and others and it is what gets me through each day not to mention my spiritual side and my Mom and Dad who are my rock. I been through many storms in my life and this is one of those storms that are big enough if I don't trust in someone or something this storm would wipe me off the map. In has tested me in so many ways and it always brings me back to God! It's a God thing! And I praise Him through this storm as the song goes. God bless everyone including the ones who do not believe in a higher power.

IVIg for CIDP in Sacramento, California June '09

IVIG is a life saving therapy and yet thousands of patients are being denied the critical infusions because of a flaw in the Medicare Act of 2005. This video kicks-off a national campaign beginning in California to ensure that the voices of patients with rare diseases who rely on IVIG are heard during health care reform because these patients are the ones that have been affected negatively in the past and will continue to be affected the most in the future. There voices must be heard. Please join us in ensuring that patients have access to lifesaving therapies by going to: www.plasmaalliance.org or david-hines@hotmail.com

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.

IVIG from California Patient access act for medicare

Dad & Christy in Delaware