Current Treatments
BETASERON® (interferon beta-1b) is indicated for the treatment of relapsing forms of multiple sclerosis to reduce the frequency of clinical exacerbations. Patients with multiple sclerosis in whom efficacy has been demonstrated include patients who have experienced a first clinical episode and have MRI features consistent with multiple sclerosis

AVONEX® (Interferon beta-1a) is a 166 amino acid glycoprotein with a predicted molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of AVONEX® is identical to that of natural human interferon beta.

COPAXONE is the brand name for glatiramer acetate (formerly known as copolymer-1). Glatiramer acetate, the active ingredient of COPAXONE, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Rebif® (interferon beta-1a) is a purified 166 amino acid glycoprotein with a molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of Rebif® is identical to that of natural fibroblast derived human interferon beta. Natural interferon beta and interferon beta-1a (Rebif®) are glycosylated with each containing a single N-linked complex carbohydrate moiety.

Tysabri is a monoclonal antibody that affects the actions of the body's immune system. Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage. Tysabri is used to treat relapsing forms of multiple sclerosis.
Gilenya™ is a new class of medication called a phingosine 1-phosphate receptormodulator, which is thought to act by retaining certain white blood cells (lympohcytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS). Preventing the entry of these cells into the CNS reduces inflammatory damage to nerve cells.


Early Symptoms
The most common early symptoms of MS include:
* Tingling * Numbness
* Loss of balance
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include
* Slurred speech
* Sudden onset of paralysis
* Lack of coordination
* Cognitive difficulties
Listed above, the early symptoms. I tend to be a poster child for these. The symptoms that occur later on are too numerous just to list. There will be a link included that will get you to a site where these symptoms are listed and explained. Keep in mind that someone may have some of these or many of these, there is no way to tell.
Multiple sclerosis statistics show that approximately 250,000 to 350,000 people in the United States have been diagnosed with this disease. The life expectancy for people with multiple sclerosis is nearly the same as for those without MS. Because of this, multiple sclerosis statistics place the annual cost of MS in the United States in the billions of dollars. MS is five times more prevalent in temperate climates -- such as those found in the northern United States, Canada, and Europe -- than in tropical regions. Furthermore, the age of 15 seems to be significant in terms of risk for developing the disease. Some studies indicate that a person moving from a high-risk (temperate) to a low-risk (tropical) area before the age of 15 tends to adopt the risk (in this case, low) of the new area and vice versa. Other studies suggest that people moving after age 15 maintain the risk of the area where they grew up.

Friday, December 10, 2010

The National MS Society, Greater New England Chapter presents ELEVEN upcoming teleconferences!

Topics that will be covered
• The hot research issues of Vitamin D and CCSVI
• Progressive MS
• A wide variety of employment issues
• Reproductive issues

Sign up for one or as many as you would like.

Research & General Information Teleconferences

Vitamin D with Sylvia Christakos, PhD, UMDNJ
You’ve heard the buzz – what is it all about? Join Sylvia Christakos, PhD, of the University of Medicine and Dentistry, New Jersey, professor and leading researcher to discuss the real facts about Vitamin D. Register now!
Thursday, December 16, 2010 7:00 - 8:00 pm - Register by Dec. 11, 2010

Reproductive Issues in MS with June Halper, APN-C, MSCN, FAAN
Find out answers to questions you have regarding the issues specific to planning and raising a family when you have MS.
Wednesday, February 16, 2011 7:00 - 8:00 pm - Register before Feb. 11, 2011

CCSVI in MS: An Update with Konstantin Balashov, MD, PhD
The current facts about this controversial research will be discussed.
Tuesday, May 3, 2011 7:00 - 8:00 pm - Register before April 26, 2011


Progressive MS Teleconferences

Overview of Progressive MS with Dorothy Northrop, MSW, ACSW
Increase knowledge of progressive MS symptoms, symptom management, emotional issues, coping strategies, family issues and resources for when family help is not enough.
Tuesday, January 25, 2011 6:30 – 7:30 pm - Register before January 19, 2011

The "Ex-Rated" Guide to Living with MS with Shelley Peterman Schwarz
Living and living well are two different things. Is MS limiting your life? Learn, from one who has been there—who has lived with severe disability due to primary progressive MS for over 30 years—how giving in to life’s challenges does not have to mean giving up. Learn how you can make creative compromises to make life more manageable and more enjoyable. Using words like “explore”, “execute” and “expand” has never been so sexy!
Wednesday, February 1, 2011 6:30 – 7:30 pm - Register before January 26, 2011


Employment Issues Teleconferences

How to Apply for Jobs in the Federal Government: Webinar
Participants will learn about special hiring programs for people living with disabilities and how to navigate the federal system from a regional recruitment coordinator with the U.S. Department of Labor. This program will include an online component if you have access to the Internet, but it is not required.
Thursday, January 27, 2011 7:00 – 8:30 pm Register before January 21, 2011

Social Security Disability Eligibility and Application Process
Participants will learn what it takes to be approved for Social Security disability benefits from a Social Security attorney.
Thursday, February 10, 2011 7:00 – 8:00 pm - Register before February 4, 2011

Social Security Disability and Returning to Work
Participants will learn about the impact work might have on their disability benefits from a Community Work Incentive Coordinator.
Thursday, February 17, 2011 7:00 – 8:00 pm - Register before Feb. 11, 2011

Jobs with Flexibility
Participants will learn about part-time and non-traditional job opportunities that allow for a flexible schedule.
Thursday, February 24, 2011 7:00 – 8:00 pm - Register before Feb. 18, 2011

Practical Tips for Managing Challenging MS Symptoms on the Job
MS specialists will share practical ways to manage fatigue and
cognitive dysfunction, two common and difficult symptoms that
people living with MS experience at work.
Wednesday, March 16, 2011 7:00 – 8:00 pm - Register before March 11, 2011

Wellness and Work
Positive wellness behaviors can minimize the impact of fatigue and cognitive symptoms and lead to greater productivity on the job. Join a personal trainer and nutritionist for tips on physical exercise, healthy eating, stress management and good sleep habits.
Wednesday, March 30, 2011 7:00 – 8:00 pm - Register before March 25, 2011

Visit Teleconference Series: National MS Society to register for this program online or call 1-800-344-4867. Due to the high number of participants we may not be able to have a live Q&A. If you would like to ask a question, please submit it at the time of registration.


National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org

Facebook Become a fan of the Greater New England Chapter on Facebook

Move to Labels More actions 1 of 863 Older › MSConnection Winter 2010National MS Society, Greater New England Chapter

Table of Contents — Winter 2010 Issue
Eli Lipcon & Bob Shapiro

Outgoing Board Chairman Eli Lipcon passes the gavel to incoming Chairman Robert Shapiro

Features

* Waterman Research Lecturers Cover Timely Topics
* Annual Meeting Unites Four States

News

* From The President
* Gilenya Is Approved

Newly Diagnosed

* Living Well With MS

Programs

* Relationship Matters
* Café con Leche
* Teleconference Schedule
* Sweet Socials
* Program Highlights

Living with MS

* Seeking Self-Help Group Leaders
* Apply Now for College Scholarships
* Questions About Health Insurance Changes?

Research

* Research Advocate
* Why Does MS Research Cost So Much?
* MS Researchers Share Progress at Annual ECTRIMS Conference

Advocacy

* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
* Prescription Parity
* MS Registry

Volunteers

* Retirement Planning with a Chronic Illness

Fundraising

* Walk with Us in 2011
* Ride with Us in 2011
* Journey of Hope 2011
* Accept the Challenge 2011
* 2010 Event Re-caps

Calendar of Events - see current calendar

Classified Ads - see current listings

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Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://main.nationalmssociety.org/ or 1-800-FIGHT-MS (344-4867).

Our postal address is:
National Multiple Sclerosis Society
733 Third Avenue
New York, New York 10017

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Federal Focus - December 2010

Medicare Reimbursement and Therapy Caps Temporarily Addressed

This week, Congress passed the Medicare and Medicaid Extenders Act of 2010. This bill will temporarily preserve Medicare reimbursement rates for physicians and protect Medicare beneficiaries’ access to Medicare physical therapy, occupational therapy, and speech language pathology for the next several months.

Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65. Nearly one-quarter of those living with MS rely on Medicare as their primary type of insurance. The sustainable growth rate (SGR) is a major component of Medicare’s current payment formula that determines annual updates and has the potential to drastically cut Medicare physician reimbursement rates, threatening access to services. Because of the negative real world impact, Congress has deferred the cuts several times—the last time delaying the cuts through December 31, 2010. The recently passed Medicare and Medicaid Extenders Act blocks a scheduled 25 percent cut that would have taken effect on January 1, 2011 and protects reimbursement through December 31, 2011.

The legislation also extends through December 31, 2011 the exceptions process for outpatient Medicare therapy caps. An arbitrary limit, the Medicare therapy cap places a combined limit of $1,860 on physical therapy and speech language pathology services and a separate $1,860 limit for occupational therapy services. In 2006, Congress authorized the Centers for Medicare and Medicaid Services (CMS) to create an exceptions process, whereby individuals can continue to access medically necessary physical therapy, occupational therapy, and speech language pathology services above cap levels as long as services met specified diagnostic and clinical criteria. The exceptions process has been extended several times and the Medicare and Medicaid Extenders Act of 2010 will continue to protect access to therapy services through December 31, 2011.

111th Congress Winds Down Without a Senate Vote on MS Registry Bill

With the lame duck session of Congress coming to an expected close by the end of next week, the Society is disappointed that the Senate has not taken up and voted on the National Neurological Disease Surveillance System Act (H.R.1362) to date. With limited time and over 400 House-passed bills awaiting a Senate vote, it seems there is little opportunity for our bill to make it to the Senate floor this session of Congress. While the prospects seem slim, it is not for a lack of passion or effort on behalf of our activists! The activists involved in this effort have been relentless in trying to move this forward and see this enacted and we are so thankful for all of their help and inspiration!

Federal Appropriations Being Determined for Fiscal Year 2011

The federal government has been operating under a Continuing Resolution (CR) that largely maintains current funding for federal departments and programs at fiscal year (FY) 2010 levels. This week, the House approved a longer term continuing resolution that will continue to freeze FY 2011 spending for the remainder of the fiscal year at FY 2010 levels.

Senate Democrats plan to try to substitute an omnibus bill that includes text from unfinished appropriations measures that alters some funding levels. Approved but unfinished appropriations measures have included significant increases for two programs important to people living with MS--MS research in the Congressionally Directed Medical Research Programs (CDMRP) and the Lifespan Respite Care Program. The Society recently sent a letter requesting that Congress maintain these increases for MS research in the CDMRP and the Lifespan Respite Care Program. At press time, the Senate had not yet acted on the Continuing Resolution.

In total, the Continuing Resolution provides $170.27 billion for programs under the jurisdiction of Labor, Health and Human Services, and Education. Many health-related programs important to people living with MS including Medicare, Medicaid, and the National Institutes of Health fall under this category. While most programs remained the same under this agreement, there was one notable addition to the Continuing Resolution--addition of funding for the Cures Acceleration Network. This program was created under the Affordable Care Act and has been supported by the Society because of its focus on improving the translation of medical research advances into new drugs and therapies.

Happy Holidays from the National MS Society

As we celebrate the holiday season, the National MS Society would like to thank its nationwide network of passionate MS activists for their commitment and continuous advocacy for federal, state, and local policies that will improve the lives of people of people living with and affected by MS. Despite another difficult budget year, MS activists boldly championed requests for increases in funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health and for family caregivers through the Lifespan Respite Care Program. We also passed legislation in the U.S. House of Representatives (but not yet the Senate) that would create nationwide multiple sclerosis (MS) and Parkinson’s Disease surveillance systems, providing important data that could help uncover and inform promising areas of MS research and support the discovery of disease therapies, treatments, and one day—a cure.

Significant momentum was gained on new legislation that would allow Medicare to cover off label prescription drugs for people with MS and other chronic diseases. MS activists also advocated for introduction of a bill to provide federal funding for the establishment and enhancement of adult day achievement centers for people with MS and other similar chronic diseases. In addition to presenting at various Congressional briefings on Capitol Hill this year that brought attention to our issues, MS Activists helped ensure the passage of the formal Congressional recognition of MS Awareness Week.

In 2010, MS activists sent over 45,000 messages to Capitol Hill. Each one of these is vitally important and is an instrumental step moving us closer to a world free of MS. Thanks to your efforts, we are making considerable progress and laying valuable groundwork for the future. The National MS Society thanks you for your activism and wishes you a happy and healthy holiday season.





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Monday, December 6, 2010

ASK THE EMPLOYMENT SPECIALIST: TELEPHONE Q&A SESSIONS

Do you have an employment question you would like answered?

Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?

On December 9, January 11, and February 2 employment specialist Barbara McKeon, CRC, LMHC, Director of Employment for the NYC - Southern NY Chapter of the National MS Society will be available to address your questions regarding employment concerns for people living with MS.

Participants may register for any one session of their choice:

December 9: 12 p.m. – 1 p.m.
January 11: 6 p.m. – 7 p.m.
February 2: 12 p.m.– 1 p.m.

Dial-in information will be provided with registration confirmation. Participants will be asked to present their question in advance during registration.

To register or for more information, call 1-800-344-4867 and have your question ready or visit Ask the Employment Specialist: National MS Society to register for this program online.

National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org

Facebook Become a fan of the Greater New England Chapter on Facebook

Saturday, December 4, 2010

What Is an MS Exacerbation? What Are the Signs and Symptoms I Should Look for?

An exacerbation (also known as a relapse) is a sudden worsening of one or more MS symptoms or the appearance of new symptoms, which lasts at least 24 hours and is separated from a previous exacerbation by at least one month. A true MS exacerbation is caused by an area of inflammation in the CNS. Exacerbations can last anywhere from days to weeks, but also may last for months and can result in permanent added disability.[1] Following are some of the symptoms that may indicate a MS exacerbation; however, this is not a complete list.[2] If you are unsure if a symptom you are experiencing is a sign of an exacerbation or if you have a symptom that is worrying you, please talk to your doctor.
Symptoms:

* Numbness, weakness, feeling constantly tired
* Loss of muscle function (especially in your lower torso)
* Difficulty going to the bathroom
* Uncontrollable shaking (tremors or muscle spasms)
* Problems with walking or balance
* Difficulty speaking
* Problems with memory and attention
* Changes in your ability to see

About Me

My photo
North Grafton, Massachusetts, United States
Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.