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?

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

Health & Home Video regarding H.R. 2002 Medicare Patient IVIg Access Act of 2009 Another video will be shot next month at the 3rd Annual NAF June 25th

Neuropathy Action Foundation Awareness Day!

The neuropathy action foundation is having there 3rd annual awareness day on June 25.

You can get all the info at: www.neuropathyaction.org

It is being held in Sacramento and folks are coming from all parts of the country!

Everyone is welcome!

I HOPE to seeing you there!

Best regards,

David Hines

IVIg a week ago

IVIg on Saturday May 23rd 2009 with nurse Allean!