National Multiple Sclerosis Society .....Because it is “hidden,” it can be frustrating to get others to understand what you are feeling.

  

http://www.nationalmssociety.org/about-multiple-sclerosis/index.aspx

 Click on the link above to see the M.S. main page!

Hi Jean Robb here.

This is an update on the last story about Multiple Sclerosis. 
I have someone I love very much named Michelle dealing Multiple Sclerosis. She always keeps a smile on her face and keeps a great attitude. I know it must be hard to deal with this everyday. I can't imagine trying to deal with the 

physical effects of the disease and having to worry about 
the high cost of the medications needed. 

Here is some information about Multiple Sclerosis and 

the efforts to get the medication cost down. 

What is Multiple Sclerosis?

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.

 MS is Thought to be an Autoimmune Disease

The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.
Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.

The Four Courses of MS

People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

• Relapsing-Remitting MS
  People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
• Primary-Progressive MS
  This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
• Secondary-Progressive MS
  Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.
• Progressive-Relapsing MS
  In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.
For more important information about MS, check out Just the Facts (.pdf)

We need your help NOW! We know that the out of pocket costs for MS prescription drugs can overwhelm family budgets and affect a patient's adherence to these critical medications. It has been an issue at the forefront of the advocacy efforts of the National Multiple Sclerosis Society across the country. This year in California, we are delighted that Assemblywoman Fiona Ma (D-San Francisco) has introduced Assembly Bill 310 to cap the out of pocket costs for very expensive specialty drugs, including the MS injectible medications, to assure that patients can afford and access their prescription drugs. We will be working closely with Assemblywoman Ma's office to ensure this legislation's success. The first step toward building our case for the need to cap the out of pocket costs for specialty drugs is to identify those MS patients who have been burdened by this problem. In moving this bill through the legislative process we will eventually need people's stories as well as need individuals who have been affected by this problem to appear at press conferences and hearings. If you or someone in your family living with MS have difficulty meeting the out of pocket costs for your MS drugs, please let me know as soon as possible. We are very excited at the prospect of passing legislation that will reduce your out of pocket costs for these very expensive MS drugs. But, your help is critical in this effort. I look forward to hearing from you. Sincerely, Stewart Ferry Public Policy Director National Multiple Sclerosis Society, Northern California Chapter