Please visit our MS learning channel on Youtube, which provides hundreds of topics from our education programs, that were video-recorded and archived here: www.youtube.com/msviewsandnews -- Be empowered with MS news by registering with us: www.register.msviewsandnews.org

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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Saturday, August 31, 2013

New Delhi News : Lack of insurance for multiple sclerosis hampers treatment

New Delhi, August 30, 2013< DHNS:
Despite the availability of treatment for multiple sclerosis for almost 15 years, the high cost and insurance companies reluctance to cover the lifelong disease are preventing patients from benefiting, feel neurologists in the capital.
Though there are no exact statistics on multiple sclerosis (MS), it is estimated that there are between 1,00,000 and 2,00,000 such patients in the country. The patented injections for the nerve disorder cost around Rs 27,000 to 28,000 per month on an average.

MS is an auto-immune disease in which the body attacks its own cells and tissues. While not totally curable, the therapies can reduce the frequency and severity of MS attacks and in some cases can slow the progression of the disabling condition.

“Multiple sclerosis was not treatable 15 years ago. But today research in drug development has made it possible to manage the disorder by up to 65 per cent,” said Dr Shamsher Diwedi, senior consultant of Neurology at Vidyasagar Institute for Mental Health, Neuro and Allied Sciences.

Too costly
“Sadly, their accessibility is still an issue as most patients are unable to afford the lifelong treatment as insurance companies have been reluctant to cover the disease under medical insurance,” he added.
Doctors also feel that patients are not well-informed about the medicines available, which is hampering appropriate treatment.

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Multiple Sclerosis and Fatigue

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.
Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.

According to the National Multiple SclerosisSociety, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue.

What Can I Do About MS-Related Fatigue?

The best way to combat fatigue related to your MS is to treat the underlying medical cause. Unfortunately, the exact cause of MS-related fatigue is often unknown, or there may be multiple causes. However, there are steps you can take that may help to control fatigue. Here are some tips:

1. Assess your personal situation.

  • Evaluate your level of energy. Think of your personal energy stores as a "bank." Deposits and withdrawals have to be made over the course of the day or the week to balance energy conservation, restoration, and expenditure. Keep a diary for one week to identify the time of day when you are either most fatigued or have the most energy. Note what you think may be contributing factors.
  • Be alert to your personal warning signs of fatigue. Fatigue warning signs may include tired eyes, tired legs, whole-body tiredness, stiff shoulders, decreased energy or a lack of energy, inability to concentrate, weakness or malaise, boredom or lack of motivation, sleepiness, increased irritability, nervousness, anxiety, or impatience.

2. Conserve your energy.

  • Plan ahead and organize your work. For example, change storage of items to reduce trips or reaching, delegate tasks when needed, and combine activities and simplify details.
  • Schedule rest. For example, balance periods of rest and work and rest before you become fatigued. Frequent, short rests are beneficial.
  • Pace yourself. A moderate pace is better than rushing through activities. Reduce sudden or prolonged strains. Alternate sitting and standing.
  • Practice proper body mechanics. When sitting, use a chair with good back support. Sit up with your back straight and your shoulders back. Adjust the level of your work. Work without bending over. When bending to lift something, bend your knees and use your leg muscles to lift, not your back. Do not bend forward at the waist with your knees straight. Also, try carrying several small loads instead of one large one, or use a cart.
  • Limit work that requires reaching over your head. For example, use long-handled tools, store items lower, and delegate activities whenever possible.
  • Limit work that increases muscle tension.
  • Identify environmental situations that cause fatigue. For example, avoid extremes of temperature, eliminate smoke or harmful fumes, and avoid long hot showers or baths.
  • Prioritize your activities. Decide what activities are important to you, and what could be delegated. Use your energy on important tasks.

  • 3. Eat Right
  • Fatigue is often made worse if you are not eating enough or if you are not eating the right foods. Maintaining good nutrition can help you feel better and have more energy.

    4. Exercise

    Decreased physical activity, which may be the result of illness or of treatment, can lead to tiredness and lack of energy. Scientists have found that even healthy athletes forced to spend extended periods in bed or sitting in chairs develop feelings of anxiety, depression, weakness, fatigue, and nausea. Regular, moderate exercise can decrease these feelings, help you stay active, and increase your energy.

    5. Learn to manage stress

    Managing stress can play an important role in combating fatigue. Here are tips to help keep stress in check:
    • Adjust your expectations. For example, if you have a list of 10 things you want to accomplish today, pare it down to two and leave the rest for other days. A sense of accomplishment goes a long way to reducing stress.
    • Help others understand and support you. Family and friends can be helpful if they can "put themselves in your shoes" and understand what fatigue means to you. Support groups can be a source of comfort as well. Other people with MS understand what you are going through.
    • Relaxation techniques. Audiotapes that teach deep breathing or visualization can help reduce stress.
    • Participate in activities that divert your attention away from fatigue. For example, activities such as knitting, reading, or listening to music require little physical energy but require attention.
    If your stress seems out of control, talk to your doctor. They are there to help.

    When Should I Tell My Doctor About My Fatigue?

    Although fatigue is a common and often expected symptom of MS, you should feel free to mention your concerns to your doctors. There are times when fatigue may be a clue to some other underlying medical problem. Other times, there may be medical interventions that can prevent fatigue.

    SOURCE: WebMD

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European Commission Approves Genzyme's Once-Daily, Oral Multiple Sclerosis Treatment Aubagio(R) (teriflunomide)

CAMBRIDGE, Mass.--(BUSINESS WIRE)--August 30, 2013-- 
Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), announced today that the European Commission has granted marketing authorization for Aubagio(R) (teriflunomide) 14 mg, a once-daily, oral therapy indicated for the treatment of adult patients with relapsing remitting multiple sclerosis (RRMS).
"The fact that Aubagio 14 mg has demonstrated a positive effect on disability progression in two phase III clinical studies underscores its importance as a new treatment option for relapsing remitting MS patients, " said Professor Ludwig Kappos, MD, Chair of Neurology, University Hospital, Basel, Switzerland. "As a new once-daily, oral treatment option with well-characterized safety and tolerability, Aubagio could be an attractive option for patients dissatisfied with traditional injectable therapies."
The EU approval of Aubagio was based on data from the Phase III TEMSO (Teriflunomide Multiple Sclerosis Oral) and TOWER (Teriflunomide Oral in people With relapsing remitting multiplE scleRosis) trials. In these trials, Aubagio significantly reduced the annualized relapse rate and the time to disability progression at two years versus placebo.
"Aubagio's efficacy, safety and convenient dosing may provide an attractive treatment option for patients," said Genzyme CEO and President, David Meeker, M.D. "Today's approval of Aubagio is another step forward for Genzyme as we work to develop important new treatments that can address the diverse needs of the MS community."
Multiple sclerosis is estimated to affect more than 2.1 million people globally. There are approximately 630,000 people affected by MS in Europe.
The development of Aubagio reflects more than a decade of work by the Sanofi R&D organization.
Aubagio is approved to treat relapsing MS in the United States, Australia, Argentina, Chile and South Korea, and is under review by additional regulatory agencies.
About Aubagio(R) (teriflunomide)
Aubagio is an immunomodulator with anti-inflammatory properties. Although the exact mechanism of action for Aubagio is not fully understood, it may involve a reduction in the number of activated lymphocytes in the central nervous system (CNS). Aubagio is supported by one of the largest clinical programs of any MS therapy, with more than 5,000 trial participants in 36 countries. Some patients in extension trials have been treated for up to 10 years.
EU Indication and Usage
Aubagio (teriflunomide) 14 mg is a once-daily, oral therapy indicated in the European Union for the treatment of adult patients with relapsing remitting multiple sclerosis.
U.S. Indication and Usage
Aubagio (teriflunomide) is a once-daily, oral therapy indicated in the U.S. for the treatment of adult patients with relapsing forms of multiple sclerosis. The recommended dose of Aubagio is 7 mg or 14 mg orally once daily.
Important Safety Information About Aubagio
Learn more, click here


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Friday, August 30, 2013

Affordable Accessible Housing - in South Florida

A Guide for People with MS in South Florida
Affordable accessible housing is often a critical element in enabling people with MS to preserve their independence and remain engaged in their communities. However, learning about available housing options can be challenging. Whether seeking to renegotiate a mortgage, arrange home modifications, apply for rental vouchers, or explore affordable assisted living, navigating the maze of agencies and funding sources supporting these alternatives and services can be daunting.
To make this process easier, the National MS Society has developed a user-friendly resource to help families evaluate their housing needs and better understand the range of housing options available to them. This resource addresses each of the subjects listed below and utilizes hyperlinks to provide users with direct access to the organizations and/or agencies relevant to that topic area.
Financial resources and strategies for the homeowner
Tips for avoiding foreclosure
Finding accessible homes and apartments
Financial resources for home modifications
Working with contractors
Protections against housing discrimination
Rental assistance
Subsidized housing
Supportive housing options
Since housing options and resources vary significantly around the country, this resource has been designed to provide not only a significant amount of general information, but to link directly to local resources and contacts.
Download the guide: Affordable Accessible Housing: A Guide for People with MS in South Florida (.pdf), complete with direct links and other local contact information.
Source: National MS Society

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A Limit on Consumer Costs Is Delayed in Health Care Law

By 


WASHINGTON — In another setback for President Obama’s health care initiative, the administration has delayed until 2015 a significant consumer protection in the law that limits how much people may have to spend on their own health care.

The limit on out-of-pocket costs, including deductibles and co-payments, was not supposed to exceed $6,350 for an individual and $12,700 for a family. But under a little-noticed ruling, federal officials have granted a one-year grace period to some insurers, allowing them to set higher limits, or no limit at all on some costs, in 2014.
Continue Reading
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Thursday, August 29, 2013

MS Treatment Options, Relapse, Adherence, MS101 and Symptom Management - a Two Speaker, MS education program

This video begins with Stuart Schlossman - President and Founder of MS Views and News - and then leads in to our TWO MS Nurse Practitioner speakers of this program on August 6, 2013 in Orlando, Fl.

MS Views and News provides information and education for those affected by Multiple Sclerosis.   
Register at our website to receive our information each week: www.msvn.org

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Patricia Pagnotta,  MSN, ARNP-C



Connie Easterling, MSN, ARNP, MSCN


LISTEN to these two fantastic speakers and Learn from the information they provide...


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INDEPENDENT Research Study on MS medications - Be compensated for your time - Read and share with others


Kadence International is a global market research firm, with a location just outside of Boston, Massachusetts. My team is currently doing some research regarding MS medications, and so we are recruiting patients to join an online bulletin board / discussion community to record their experiences with various forms of treatment.

In addition to being paid for your time, we feel that this is a unique and interesting opportunity for patients to influence the MS medications that are available and coming onto the market.

Here are the details:

- The online bulletin board will run for 6 – 8 weeks

- During this period of time, participants would be asked to respond to questions on the online bulletin board an average of three times per week

- A professional moderator will also post comments and questions in response to what you’ve written, so participants will also need to log in to respond to those

- We expect that your active participation would be about 20 minutes per session, so approximately one hour per week

- Additionally, we might ask you to complete one or two exercises using your imagination and creativity, such as a weekly journal

- The online bulletin board is not real-time chat, so you’ll be able to log in whenever it’s convenient for you


As a thank you for your time and opinions, you will receive a check for $350 after completing the full 6 – 8 week exercise.


We are specifically looking to recruit patients who have Relapse-Remitting MS, and who are within a 2 - 3 weeks window of switching:

  • From nothing to Gilenya
  • From nothing to Tecfidera
  • From Copaxone to Aubagio
  • From Copaxone to Gilenya
  • From Copaxone to Tecfidera
  • From Interferon to Aubagio
  • From Interferon to Tysabri



If you have any questions, or if you’d be interested in participating, please feel free to reach out to me (Elizabeth Staples) at either (508) 283-5025 or estaples@kadence.com


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Explore how to start a conversation with your doctor about Tecfidera

Explore how to start a conversation with your doctor about Tecfidera

Tecfidera (dimethyl fumarate) is a prescription medicine used to treat people with relapsing forms of multiple sclerosis.


Learn More of Tecfidera (also known as: BG12) here: http://www.tecfidera.com/


Important Safety Information

Before taking and while you take Tecfidera, tell your doctor about any low white blood cell counts or infections of any other medical conditions.



What are the possible side effects of Tecfidera?

Tecfidera may cause serious side effects including decreases in your white blood cell count.

Your doctor may check your white blood cell count before you take Tecfidera and from time to time during treatment.

The most common side effects of Tecfidera include flushing and stomach problems. These can happen especially at the start of treatment and may decrease over time. Call your doctor if these symptoms bother you or do not go away.
These are not all the possible side effects of Tecfidera. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-­800-­FDA-­1088. For more information go to dailymed.nlm.nih.gov.

Tell your doctor if you are pregnant or plan to become pregnant, or breastfeeding or plan to breastfeed. It is not known if Tecfidera will harm your unborn baby or if it passes into your breast milk. Also tell your doctor if you are taking prescription or over-­the-­counter medicines, vitamins, or herbal supplements.

Please see the full Prescribing Information and Patient Information for additional important safety information. This is not intended to replace discussions with your doctor.


One Day for everyday - An Aubagio - MS Orla Medication - Learning program by Lake Buena Vista, Fl on Sept 7th, 2013


 MS Views and News™  Disclaimer
  As a service and courtesy to you, the MS Views and News (MSVN) organization wants to inform you of this educational opportunity.  MSVN™  has had no role in developing the content or choosing speakers for this program. MSVN™  respects your privacy and does not disclose your personal information to third parties. 



1)      SEE BELOW for an MS educational seminar that pertains to a program happening near you and then:  
2)      To register for the program, please use the website address or contact number provided on that flyer.
  



CLICK the banner (showing below) to access a GENZYME website where you can register for an event that is taking place in Lake Buena Vista on Saturday, Sept 7th:

You’re invited to a special national event for people with relapsing MS and their care partners.

Date:       Sept 7, 2013

Time:       10am-1pm


Location: Walt Disney World Dolphin
               1500 Epcot Resort Blvd
               Lake Buena Vista, FL 32830

Speaker: Mark Cascione, MD



Register by clicking here  and then clicking on the Orlando location. 


COMPLETE ALL INFORMATION and share with others who can benefit from this learning program


   Program features a panel of National MS experts and patients



CLICK ABOVE BANNER TO REGISTER FOR THE ORLANDO PROGRAM Or call 1-866-703-6293



'MS VIEWS AND NEWS' will be exhibiting at this Event– 
We hope you will come to learn from the many speakers!!

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Earth Life Likely Came from Mars, Study Suggests (Non MS related)

SPACE.com

Earth Life Likely Came from Mars, Study Suggests
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View gallery

NASA's Hubble Space Telescope snapped this shot of Mars on Aug. 26, 2003, when the Red Planet was 34.7 …
We may all be Martians.
Evidence is building that Earth life originated on Mars and was brought to this planet aboard a meteorite, said biochemist Steven Benner of The Westheimer Institute for Science and Technology in Florida.
An oxidized form of the element molybdenum, which may have been crucial to the origin of life, was likely available on the Red Planet's surface long ago, but unavailable on Earth, said Benner, who presented his findings today (Aug. 28; Aug. 29 local time) at the annual Goldschmidt geochemistry conference in Florence, Italy. [The Search for Life on Mars (Photo Timeline)]

READ entire article found here:



FDA Warns of PML Case With Gilenya


Published: Aug 29, 2013





SILVER SPRING, Md. -- A patient being treated for multiple sclerosis and who had no history of using natalizumab (Tysabri) developed progressive multifocal leukoencephalopathy (PML) while taking fingolimod (Gilenya), the FDA said.
"This is the first case of this disease ... reported following the administration of Gilenya to a patient who had not previously received Tysabri," the agency said in a statement posted on its website.
The patient, living somewhere in Europe, had been on fingolimod for "nearly 8 months" when PML was diagnosed, according to the FDA. The agency stopped short of saying fingolimod caused the condition, however.
"We are working with Gilenya's manufacturer, Novartis, to obtain and review all available information about this occurrence," the agency said. "We will communicate our final conclusions and recommendations after our evaluation is complete."
For its part, Novartis issued a statement indicating that the firm does not believe fingolimod was responsible for PML in this case, which it had reported publicly in late July.
"Having reviewed all available information, Novartis considers that several features of this case of PML make it unlikely to be attributable to Gilenya," the company asserted.
Fingolimod was not the only drug the patient had been taking, both Novartis and the FDA noted.
"The patient had been treated with interferon beta-1a and azathioprine for 1 month before initiating Gilenya treatment; those medications were stopped when Gilenya was started. The patient also received multiple courses of intravenous corticosteroids for several months before and during Gilenya treatment," according to the FDA.
Novartis said "MRI reviewers" had examined brain scans taken before the patient started on fingolimod and determined that the patient might already have had PML, because lesions seen in the scans were "atypical" in MS.
PML results from reactivation of latent infection with the JC virus, usually in patients with acute or chronic immunosuppression. The death rate has recently been about 20%.
It was first noted in patients receiving cancer chemotherapy and later in those infected with HIV. A series of PML cases seen with natalizumab after the drug was first approved in 2004 led to its temporary removal from the market.
In the current case, the patient showed JC virus DNA in cerebrospinal fluid as well as clinical symptoms, and fingolimod was stopped, the FDA said. The agency's statement indicated the patient is still alive.
The FDA advised clinicians to report side effects involving fingolimod to its adverse-event reporting system. It also told patients currently taking the drug not to stop it without talking first with their physicians.
Article Source: MedPage Today

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FEEL YOURSELF TO FREE YOURSELF

BY:  MICHELLE ALVA


When we feel, we free up whatever has been holding or stuck inside of us... 

Try it. Feel without judgement. 

Feel with full acceptance. And notice... 

What arises. 

Read my latest blog article "Tuned out or tuned in? Discover the benefits of feeling yourself." 
http://www.michellealva.com/tuned-out-or-tuned-in/



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Tuesday, August 27, 2013

Video of an MSVN Comprehensive Education Program - For Newly Diagnosed and other stages of MS

A COMPREHENSIVE LOOK AT MULTIPLE SCLEROSIS - MS 101, Treatment Options, Symptom Management, MS Relapse, Adherence and more



an MS Views and News education program
Videotaped on: August 6, 2013 - in Orlando, Fl.
MC - Stuart Schlossman, President, Founder and an MS Patient


A COMPREHENSIVE LOOK AT MULTIPLE SCLEROSIS -

Presented By:
Patricia Pagnotta - MSN, ARNP-C
MS101 for the Newly Diagnosed and Symptom Management

and

Connie Easterling - MSN, ARNP, MSCN
Treatment Strategies, MS Relapse, MRI, Adherence & Compliance


View these TWO interviews on our YouTube channel, found here:
Patricia: - Part 1 of 2       http://youtu.be/ZkQ99_Du0d8
Connie:  - Part 2 of 2       http://youtu.be/Od-BhEHWfxM



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Newly Diagnosed With MS? What You Should Do

By Robin Westen                         August 2013
No one knows exactly how many people have Multiple Sclerosis (MS), but experts think there are currently 250,000 to 350,000 people in the United States diagnosed with the disease. This means every week approximately 200 people learn they have it, and studies show that the rate of the disease has been steadily increasing. If you’re diagnosed with MS, here are the first steps to take:
Know the facts: There are lots of myths around MS and sometimes misconceptions can be scarier than the facts. MS is a chronic autoimmune disease that affects the central nervous system. It’s caused when the immune system attacks the myelin, the protective insulation covering nerve fibers in the brain and spinal cord. Myelin is destroyed and replaced by scars of hardened tissue (lesions), and some underlying nerves are damaged. But MS is almost never fatal; many people diagnosed with the disease never need a wheelchair.
Be sure of your diagnosis: Since MS isn’t easy to diagnose, getting a definite diagnosis takes time. Various tests may be used. Besides a neurological exam, you might also have magnetic resonance imaging (MRI), evoked potentials (EP), and spinal fluid analysis (spinal tap).
Understand the symptoms: No two people have exactly the same MS symptoms, and you may have different ones from time to time. They can include numbness, blurred vision, loss of balance, poor coordination, slurred speech, tremors, extreme fatigue, problems with memory, bladder dysfunction, paralysis, blindness, and more. Over the course of the disease, some MS symptoms will come and go; others may be long lasting.
Source: Third Age
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Sunday, August 25, 2013

CCSVI Update: Doubts About Cause of MS

Controversial Theory Behind Possible MS Cause Refuted

Canadian researchers report that blocked veins in head, neck don't prompt autoimmune disease

WebMD News from HealthDay

Canadian researchers report that blocked veins in
By Robert Preidt
HealthDay Reporter

WEDNESDAY, Aug. 14 (HealthDay News) -- New research finds that there is no evidence that multiple sclerosis is associated with reduced or blocked blood flow in the veins of the head or neck.
The study results challenge a controversial theory that a condition called chronic cerebrospinal venous insufficiency (CCSVI) -- a narrowing of veins that drain blood from the brain and upper spinal cord -- is associated with MS. The theory also holds that patients would benefit from using balloon angioplasty or stents to widen the veins, a treatment called liberation therapy.
However, this Canadian study of 100 people with MS found no abnormalities in the veins in their neck or brain. The findings were published online Aug. 14 in the journalPLoS One.
Each patient underwent ultrasound and an MRI of brain and neck veins on the same day. The research team included a radiologist and two ultrasound technicians who received training in liberation therapy.
"[The results] provide compelling evidence against the involvement of CCSVI in MS," principal investigator Ian Rodger, a professor emeritus in the School of Medicine of McMaster University in Ontario, said in a university news release. "Our findings bring a much needed perspective to the debate surrounding venous angioplasty for MS patients."


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