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Friday, June 19, 2009

Managing Symptoms: Bowel Dysfunction

MS Learn Online Presents

Today's new Feature Presentation

Managing Symptoms: Bowel Dysfunction
featuring Nancy Holland, EdD, RN, MSCN
focuses on:
  • Constipation
  • Incontinenance of the bowel
  • A healthy regimen
Click here to view the webcast, or
copy into your browser:
If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.


I Walk Because Program Gives Consumers a Voice

PR Newswire

- Provide Rich Social Media Experience For WalkMS Participants -

NEW YORK, June 18 /PRNewswire/ -- Reinforcing its commitment to those who support friends, family, and other people living with multiple sclerosis, Saatchi & Saatchi Wellness partnered with Acorda Therapeutics to relaunch the online component of the "I Walk Because" program. The site delivers a personalized user experience through the use of enhanced social media applications.

The site,, relaunched to coincide with the 2009 season of the National Multiple Sclerosis Society's WalkMS program, is the online extension of Acorda's presence at 30 of the largest Walks around the country. Saatchi & Saatchi Wellness partnered with Studio PMG, a California-based multimedia company, to incorporate cutting edge technology into the build and execution of the site.

Continue to read from the 3rd paragraph

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Biogen Reports New PML Case in Tysabri Patient

Source United Spinal Assoc.

Biogen Idec. Inc. recently reported the eighth confirmed case of progressive multifocal leukoencphalopathy (PML) in a patient taking the company’s drug Tysabri. PML is a rare and often fatal viral disease that is characterized by progressive damage or inflammation of the white matter of the brain at multiple locations.

According to reports, the patient with the latest confirmed PML case took 35 doses of the monthly medication, the most of any of the post-launch cases, and was located overseas. Only two of the eight cases since last July were located in the U.S.

In 2005, a link between Tysabri and PML led to the drug being pulled off the market for 18 months. The drug was relaunched in 2006 due to its effectiveness in fighting MS.

It is reported, however, that the long-projected risk of developing the PML infection while on Tysabri is well below 1 in 1,000 patients.

Continue reading

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Teriflunomide Oral Drug Trial Recruiting Worldwide

The TOPIC Study is a clinical research study testing the safety and effectiveness of Teriflunomide, an oral investigational medication for those at high risk of developing multiple sclerosis (MS). This study, which is sponsored by Sanofi-Aventis, will also determine whether early treatment can reduce the severity of symptoms associated with MS.

Teriflunomide (Terr-eh-floo-no-mide) is derived from Leflunomide (Leh-floo-no-mide), also known as Arava®. (<

Arava® is already approved in many countries for the treatment of rheumatoid arthritis. Teriflunomide inhibits rapidly dividing cells, including activated T cells, which are thought to drive the disease process in MS.

Read More, from the United Spinal MS Scene<

Intimacy and Multiple Sclerosis: A Four-Point Strategy to Maintain a Satisfying Sex Life

source: United Spinal Association
By: Tom Scott

In every healthy marriage and relationship, intimacy plays an important role. For those living with a disability, such as multiple sclerosis (MS), maintaining a satisfying sex life can be an arduous task. But there are ways to return to the level of intimacy you once knew.

“I think MS, especially for women who are diagnosed, can affect your psyche,” says Mimi Mosher, who, through the National Multiple Sclerosis Society, offers intimacy guidance to patients. “Many women, at times, feel unattractive and experience mobility issues and various symptoms of the disease that hurt their self-confidence. First and foremost you really need to restructure who you are and become comfortable in your own skin before you can start to address intimacy and relationship-related issues.”

Mosher was diagnosed with progressive MS at the age of 24, gradually losing her ability to walk and witnessing a steep decline in her energy and stamina. Her initial MS symptoms were vision-related: She unexpectedly started losing her eye site. After undergoing a barrage of tests, doctors gave her a 30% chance of not having MS.

To continue to read this well informative and much needed (by many) article, click here


MS Related: Biogen hopes to have PML-related test by year-end

* Biogen working on test for virus related to PML

* Says risk of PML less than originally believed

* Physicians expected to increase Tysabri use

By Toni Clarke

BOSTON, March 25 (Reuters) - Biogen Idec Inc said on Wednesday it is developing a test that can identify the presence of a virus that can cause a potentially deadly brain infection in certain patients taking its multiple sclerosis drug Tysabri, and hopes to have it available by year-end.

Click here to continue reading from Reuters


Thursday, June 18, 2009

Registry Would Collect Accurate MS Data and Risk Factors

Thank you to all MS activists who have been pushing for a national multiple sclerosis registry. Senator Byron Dorgan (ND) on Tuesday introduced legislation that would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis and Parkinson's disease — the National MS and Parkinson's Disease Registries Act (S. 1273).

Many of you have expressed concern about whether the current numbers accurately reflect the MS community. Ask your Senators to support the MS registry legislation. Click here and enter your ZIP to take action.

This legislation would establish separate registries for MS and Parkinson's disease at the Agency for Toxic Substances and Disease Registry at the Centers for Disease Control and Prevention (CDC).

The epidemiological data collected and analyzed through the MS registry will provide a foundation for evaluating and understanding MS issues such as geographic clusters of diagnosis, genetic and environmental risk factors, variances in gender ratio, disease burden, and changes in health care practices. Read more here (pdf).

Thank you for being an MS activist. Join the movement at

Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You

Traveling With Multiple Sclerosis

Your MS symptoms shouldn’t prevent you from planning the perfect vacation. United Spinal Association’s Able to Travel program can alleviate the stress involved in booking an accessible trip.

Traveling with a disability such as multiple sclerosis (MS) can be a stressful experience. Some individuals are so intimidated by the prospect of encountering accessibility issues away from home, that they are reluctant to plan a dream vacation or family getaway.

Continue to read this important exposé from the United Spinal website. Click Here
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Genes Behind Multiple Sclerosis Identified

Thursday, June 18, 2009

An international team of scientists have discovered two genetic variants that could increase the risk of multiple sclerosis (MS). The genes could also reveal links to other autoimmune diseases.

The study was published 15 June in the prestigious scientific journal Nature Genetics.

rofessor Matthew Brown, from The University of Queensland's Diamantina Institute for Cancer, Immunology and Metabolic Medicine, said a gene identified by the research consortium could lead to simple preventative treatments for MS.

“One of the two genes is most likely a gene which controls metabolism of vitamin D,” Professor Brown said.

Continue to read by clicking here

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Multiple Sclerosis: The ability of the immune system to discriminate between "self" and "non-self" antigens is vital

Cybermed, 18-06-2009

Novel methods of therapy of neuroautoimmune diseases such as multiple sclerosis, neuroboreliosis as well as autism

The ability of the immune system to discriminate between "self" and "non-self" antigens is vital to the functioning of the immune system as a specific defense against invading microorganisms. "Non-self" antigens are those antigens on substances entering or present in the body which are detectably different or foreign from the animal's own constituents, whereas "self" antigens are those which, in the healthy animal, are not detectably different or foreign from its own constituents.

However, under certain conditions, including in certain disease states, an individual's immune system will identify its own constituents as "non-self," and initiate an immune response against "self" material, at times causing more damage or discomfort as from an invading microbe or foreign material, and often producing serious illness in an individual. Autoimmune disease results when an individual's immune system attacks his own organs or tissues, producing a clinical condition associated with the destruction of that organ or tissue, as exemplified by diseases such as rheumatoid arthritis, insulin-dependent diabetes mellitus, acquired immunodeficiency syndrome ("AIDS"), hemolytic anemias, rheumatic fever, Crohn's disease, Guillain-Barre syndrome, psoriasis, thyroiditis, Graves' disease, myasthenia gravis, autism, glomerulonephritis, autoimmune hepatitis, multiple sclerosis, systemic lupus erythematosus, dystrophic epidermolysis bullosa, and the like.

To continue to read this long article, click here.


Wednesday, June 17, 2009

MS Patients needed for online research via patient surveys

The Find a Cure Panel will be asking for MS Patients to complete surveys over a few month period

To help Research for Multiple Sclerosis, we are asking that you register for this series of surveys by clicking on this link:

The information you need to first complete is the registration form. Then, in a few weeks, the Surveys will then begin arriving at the email address you provide.

At the end of the Survey Cycle:
For each completed survey, the "Find a Cure Panel"
will donate to "MS Views and News" .

Register to help MS research
Thank you


Multple Sclerosis Related : Patient assistance Programs

Patient Assistance Programs

AMPYRA Patient Support Services
at 888-881-1918 from 8:00 a.m. to 8:00 p.m. Eastern Time


MS Patients in Rhode Island to soon begin feeling better

Rhode Island Will License Medical Marijuana Shops, Overriding Veto

Updated: 06-17-09

The Rhode Island legislature overrode a gubernatorial veto of a medical marijuana law Tuesday afternoon by an overwhelming margin, paving the way for state-licensed medical marijuana shops to begin operating. The House voted 68-0 for the pot measure and the senate moved it minutes later by a 35-3 count.

Once the law takes effect, the state will be the first in the nation to have one officially licensed nonprofit center selling marijuana. Over time, the state will license further nonprofit dispensaries.

Continue reading this GREEN, Leafy Story


Scots schoolboy leads MS campaign to Hollyrood

A CAMPAIGNING Scots schoolboy whose mother has multiple sclerosis has led hundreds of supporters to Hollyrood in a bid free vitamin D to be made available for children and pregnant women..

Ryan McLaughlin wants the groups to get free vitamin D supplements, believing it can help prevent multiple sclerosis (MS).

The 14-year-old from Drumchapel, Glasgow, said he decided he had to act when he saw his mother suffering with the incurable disease.

Ryan said he was inspired after watching the film Braveheart and hearing Harry Potter author JK Rowling talk about her mother's battle with MS.

He was joined by around 200 supporters, many of them schoolchildren, in a march down Edinburgh's Royal Mile towards the Scottish Parliament.

Speaking before putting his case to Holyrood's Petitions Committee, he said: "I'm going to Parliament to try to give them my insight into how my family's been affected and that vitamin D is the answer, in my opinion, to get through this."

Continue to read by clicking here and continuing from the 7th paragraph

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NYU Study May Find Better Treatments For MS

Doctors at New York University are conducting a medical study that may determine the best treatments to slow the advancement of multiple sclerosis. NY1's Health reporter Kafi Drexel filed the following report.

David Rice Jr. had not even reached his 40th birthday when he found out he had multiple sclerosis.

"I was sad. You think about your future, and you think, what's my future going to be? Am I going to be a burden to someone? What's going to happen with me?" says Rice.

Click here to continue reading from the 3rd paragraph and to watch a video from


When To Massage Injection Sites for People With MS, and more

AMAZING, totally amazing. Before you read what is found below (which I personally just read), I was telling a friend earlier today that yesterday, in spite of mid 90 temperature, I had fixed several sprinkler heads that needed replacing and that earlier today, I was doing some in-home repairs (in cool temps).These are things that for the last few months needed to get done, but didn't, because of my fatigue and pain issues... I am mentioning this, because I felt so productive doing these small tasks, rather than sitting in front of the computer all day. Then seeing what Julie wrote, I was amazed...

Here is Julie's story:

from Julie Stachowiak, Ph.D.
Usually I try to find articles or blogs that have a loosely-related theme, then say something moderately insightful about them. However, today I woke up feeling the effects of the heat and lack of sleep and worse than when I went to bed last night. Most days I rage against these feelings and fight them to get something done, which usually ends up with me feeling a little angry and still nonproductive.

Today I have decided to kick back a little and take a new approach (although I still put together a couple little articles for you guys). Think I am going to be nice to myself, take it as easy as possible and see what happens. I bet I'll get just as much done and feel better about this whole situation.

I encourage everyone to do the same - do something that makes you feel good. It's worth a try, and besides, I am starting to realize that the sun doesn't seem to be responding to my threats and begging, unless that is the reason that it has kicked it up a notch. Take (extra) care of yourselves, my friends.

What MSers, MS Nurses and MS Docs Have to Say
The National Multiple Sclerosis Society conducted a survey of 250 MS neurologists, 250 MS nurses and 250 people living with MS. Here is a very brief summary of the results. Read more...

When To Massage Injection Sites for People With MS
This is a short little reminder that massaging injection sites is a good thing, but you have to know when to do it, based on the med you are using. When I rub my Copaxone sites (or convince my husband to do it), that hurts-so-good feeling almost makes the whole injecting yourself thing worth it. Almost.
Read the full article: When To Massage Injection Sites for People With MS


RRMS - UK research project

Information found below was furnished by Gemma Y - on Facebook

HL397 Get £15 for an interview about Multiple Sclerosis in the UK.
We would like to offer you £15.00 for taking part in a 15 minute online survey about Relapsing-Remitting Multiple Sclerosis.

To qualify you will have to meet the following criteria:-
a) Have been diagnosed with Relapsing-Remitting Multiple Sclerosis
b) Have been diagnosed by a neurologist
c) Take one of the following medications Avonex (Interferon Beta 1a), Rebif (Interferon Beta 1a), Betaseron / Betaferon (Interferon Beta 1b), Copaxone (Glatiramer Acetate),Novantrone (Mitoxantrone) , Corticosteroids (e.g. Depo-Medrol), or Tysabri, formerly known as Antegren (Natalizumab)
d) Live in the UK

If you wish to take part please email :

Subject titling your email RRMS Alternatively you can join us at The Patients Voice by clicking here

Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You

Tuesday, June 16, 2009

MS Trial Alert: Study of Oral Teriflunomide (HMR1726) Recruiting People at High Risk for MS Worldwide

Summary: Investigators worldwide are recruiting people at high risk for multiple sclerosis (MS) for a study comparing two doses of oral HMR1726 (teriflunomide), an immune system-modulating agent, and inactive placebo. People at high risk for MS are those who experience a clinically isolated syndrome (CIS, a single neurological event suggestive of demyelination, such as focal weakness, numbness, coordination problems, or decrease in vision in one eye) and brain magnetic resonance imaging findings suggestive of MS. The study is sponsored by Sanofi-Aventis

click here to be redirected to ms society website to finish reading this article

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MS ACTION ALERT - Help Include Follow-On Biologics in Health Care Reform - would be seen when posted ..



THE Vitamin D gene 'could treat multiple sclerosis'

WASHINGTON: Scientists have discovered two new genes involved in multiple sclerosis, a breakthrough they claim could pave the way for treating the debilitating disease using vitamin D.

An international team has pinpointed the two genetic variants which increase the risk of multiple sclerosis as well as reveal links to other autoimmune disease, the latest issue of the 'Nature Genetics' journal reported.

Lead scientist Prof Matthew Brown of the University of Queensland said: “One of the two genes is most likely a gene which controls metabolism of vitamin D. Previous research has already shown that levels of vitamin D influence the risk of people contract ing MS. **For example, people have a higher risk the further they live from the Equator. This instantly suggests that a possible preventative treatment for multiple sclerosis is vitamin D. This may lead to new types of therapeutics down the track.'' Thei r three-year study involved scanning the DNA of 1,618 people with multiple sclerosis and 3,413 people without multiple sclerosis.

The team looked at genetic landmarks in the genome called SNPs and then progressively narrowed down their search to individual genes. After comparing over 300,000 SNPs, two genetic regions on chromosome 12 and 20 showed significant differences. - PTI

Source: Business Line - June 16, 2009


Cholesterol drug may block nerve repair

NEW YORK (Reuters Health) - Zocor (simvastatin), a "statin" type of cholesterol-lowering drug, may block the body's ability to repair nerve tissue, according to a report in The American Journal of Pathology.

The results of an animal study suggest that use of Zocor impairs "remyelination," a process in which the fatty outer covering of nerve cells is reformed. Several neurologic disorders, most notably multiple sclerosis, involve the loss of this covering, which protects nerves and helps them transmit signals faster.

Statins are currently in clinical trials for the treatment of multiple sclerosis based on their ability to improve symptoms in animal models of the disease. However, there has also been evidence that statins may damage the cells responsible for remyelination.

Dr. Veronique E. Miron from McGill University, Montreal, Canada and colleagues investigated the effect of long-term Zocor therapy on an experimental form of multiple sclerosis in lab animals.

Treatment with Zocor for 5 weeks, but not for 3, impaired remyelination, the authors found. They believe that Zocor achieves this effect by blocking the development of cells responsible for remyelination.

The results highlight the importance of monitoring the long-term effects of drugs that can access and affect the brain and spinal cord, the researchers state..

SOURCE: The American Journal of Pathology, April 6, 2009.
Published June 09, 2009 -

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The Narcoms Update - for those with Multiple Sclerosis

We have recently made a few changes to the website. The new look and features were designed to make completing the survey easier and improve the quality of the data used for research. We appreciate your continued dedication in completing the surveys and welcome any feedback.

The NARCOMS Spring 2009 Update Survey is currently available at

What is Narcoms (many of you must be thinking)?

NARCOM's VISION: The Vision of the NARCOMS/Global Patient Registry is to facilitate multi-center research in the field of multiple sclerosis (MS). We strive to develop collaboration between centers of excellence in MS throughout the world to increase knowledge, leading to improved clinical care and quality of life for MS patients.

To read their Goals and more, click here


Monday, June 15, 2009

What Multiple Sclerosis Means to the MS Patient - a photo essay

Jo Sapala sent the following:

The MS Trust recently held a competition during MS Awareness week.

The competition was for people to take a photo of what MS means to them
- there are some amazing pics here :

Place Your Vote by seeing if you can identify with any of the photos found in this link

Then tell us your thoughts by leaving a comment here.
I know that I (Stuart Schlossman), identify with the "What If" ?
Fore, I always say, what if I were not doing my ms medications.
How far along might I be, or NOT ?


Aussie And Kiwi Researchers Make Double MS Genetic Discovery

June 15, 2009

Australian and New Zealand researchers have accelerated research into Multiple Sclerosis by discovering two new locations of genes which will help to unravel the causes of MS and other autoimmune disease.

Their findings will be published today in the prestigious journal Nature Genetics.

"For decades the cause of MS has remained a mystery. This discovery reveals important new insights into the genetic susceptibility to the disease, "says Professor Trevor Kilpatrick, Director for Neurosciences at the University of Melbourne, who with Dr Justin Rubio of Florey Neurosciences Institutes coordinated the international study.

"The newly discovered gene locations in chromosomes 12 and 20, offer very promising targets which indicate susceptibility to MS," says Professor Kilpatrick.

"They also reveal a link between genetic susceptibility to MS and other autoimmune diseases including Type 1 diabetes, Rheumatoid Arthritis and Graves' Disease and the also the potential involvement of Vitamin D metabolism in the risk of developing these diseases."

Click HERE to be re-routed to the Medical News Today website and continue to read from the 6th paragraph


MS Society of Canada - Commends Federal Government's Research Investment In Neurological Diseases

June 15, 2009

The Multiple Sclerosis Society of Canada praised the government's announcement of $15 million to study the impact of a wide variety of neurological conditions, including multiple sclerosis.

"The MS Society applauds the federal government's $15 million commitment to pursue a greater understanding of neurological diseases and injuries," said Yves Savoie, president and CEO of the MS Society of Canada. "In the field of MS, we anticipate the results of this work will help guide our efforts to fund the best research and deliver programs that positively impact quality of life."

Continue to read this story from Medical News today, 3rd paragraph.


Study Estimates Now 100,000 People With MS In UK

June 15, 2009
Prevalence Of Multiple Sclerosis In The United Kingdom - Study Estimates Now 100,000 People With MS In UK
Sara L Thomas,a Rachael Williams,b Tim Williams,b Andrew J Hall.a

a Department of Epidemiology & Population Health, London School of Hygiene & Tropical Medicine
b The General Practice Research Database


Estimates from a decade ago suggested that 85,000 individuals were living with an MS diagnosis in the UK, but the accuracy of this figure is unclear. We analyzed UK population based data to obtain updated estimates of the lifetime prevalence of MS and the number of individuals living with MS.

To continue reading, click here to continue to read from METHODS...


Sunday, June 14, 2009

Cool, entertainment Link

Provided by Susan D., in Miami - thanks Susan

Click this
You Tube Link
and be entertained for a just over one minute.

Greatest impromptu piano duet by a 90-year-old couple in the Mayo Clinic lobby you'll hear today.

Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You