The Great NetXperiment!

 Berlex, Microsoft, and the National Multiple Sclerosis Society Embark on
  Landmark Collaboration to Help People with MS Maintain Their Health and
                               Stay Connected

    NEW YORK, March 19 /PRNewswire-USNewswire/ — In today’s fast-paced,
digital environment, more people are embracing the technology that has
revolutionized the way we conduct business, interact with our family and
friends, and manage our households. For some people with multiple sclerosis
(MS), technological advances may offer benefits, but they can also pose
challenges. Due to some MS symptoms, everyday tasks such as seeing a
blinking cursor on a computer screen, manipulating a mouse, or remembering
when to take medication may prove difficult. Industry leaders think they
may be able to change this.

    Recognizing the advantages that technology can bring to people with MS,
leaders from three specialty areas — pharmaceutical, technology, and
patient advocacy — have come together to improve the way technology may
help people with MS maintain their health and independence, have support
for their life choices, and stay connected with their families, friends,
and communities.

Read More - Accessible Technology Can Offer Customizable Solutions to People with MS

For Michelle Schilling and 400,000 other Americans who acknowledge
having multiple sclerosis, symptoms are most often strange and vague —
different for each person.

“I woke up from a nap one day and the
entire side of my body was numb,” Schilling said of her first attack of
multiple sclerosis (MS) seven years ago.

Every week 200 people
in the United States, one every 20 minutes, are diagnosed with MS,
according to the National Multiple Sclerosis Society.

…

There are more than 15,000 people in Ohio diagnosed with MS. It is the
leading disabler of the Ohio economy, costing an individual more than
$57,000 each year and $1 million over the course of the disease,
according to The National Multiple Sclerosis Society, Ohio Buckeye
Chapter.

….

Read More: Living with MS

The biggest
question in multiple sclerosis is, why does the body turn on itself and
attack the protective insulation around nerves as a dangerous invader?

Short of knowing why, Dr. Thomas Forsthuber is content to figure out how — and better still, how to stop it.

“You need a series of unfortunate events to develop the disease, an
unfortunate constellation,” said Forsthuber, professor of immunology at
the University of Texas at San Antonio’s South Texas Center for
Emerging Infectious Diseases. “We’re trying to understand how.”

In multiple sclerosis, the body’s natural defenses damage and scar the
protective myelin sheath — layers of fat and protein — that surrounds
nerves, interrupting their signals like a frayed electrical wire. The
first symptoms of the disease often are vision problems, followed by
muscle weakness, difficulty with coordination and balance, pain and
numbness.

Most patients have mild or moderate forms of
the disease, with symptoms that come and go, but some are left unable
to write, speak or walk. About 400,000 Americans have MS, which is
usually diagnosed in people between ages 20 and 40.

Forsthuber brought his work to UTSA a little over a year ago from Case
Western Reserve University in Cleveland after 15 years of studying MS
and other autoimmune disorders. In August he received his third career
research grant from the National Multiple Sclerosis Society to continue
his work.

Read More Here Don Finley

autoimmune disorders MS Stuff multiple sclerosis national multiple sclerosis society

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In the USA but why confine it to just one country?

I will be stepping up the information I am putting on the blog. Lots and lots of news snippets and interesting research information. As well as looking at various personal stories from people with Multiple Sclerosis.

To all other MSers I challenge you to writing (or reporting) a piece each day in your blogs about MS. Lets flood the internet and the local news services and where-ever else you have access to.

JK ROWLING yesterday condemned a decision to deny multiple sclerosis patients in Scotland access to a drug on the grounds of cost.

The Harry Potter author, whose mother suffered MS, broke her silence on the Scottish Medicines Consortium’s refusal to recommend Tysabri ahead of a debate on the drug by MSPs tomorrow.

Rowling said cost should not dictate the use of a drug which could help tackle a serious illness such as MS.In December, the SMC said the economic case for Tysabri - which costs £15,000 a year per patient - had not been demonstrated.The announcement prompted dismay among patients and MS campaigners.

Scotsman.com News - Read More Here

jk rowling MS Stuff multiple sclerosis scotland tysabri

Unless we are talking to each other. And that is about the pain that is experienced that comes along with the disease. The old literature will still tell you that MS is painless, and for the lucky few that is true. But more and more research is being done into the whole pain thing.

Much remains unknown about the scope, nature, and impact of pain on the lives of persons with multiple sclerosis (MS).

In the present study, 180 community dwelling adults with MS completed a postal survey that included demographic measures, MS disease measures, and several standardized measures of pain, including pain intensity, variability, location, and pain-related interference.

66% of the sample reported pain,

25% of whom reported severe pain.

Persons with pain reported an average of 6.6 distinct pain sites.

Using the Brief Pain Inventory Interference Scale, the average level of overall pain interference was 3.33 (0-10 scale) in the group reporting pain.

The highest levels of pain interference were reported for sleep, recreational activities, and work in and outside the home.

Persons with pain were more likely to report greater MS disease severity, poorer psychological functioning, and poorer health than persons with MS but not pain. Persons with pain were also less likely to be employed.

These findings are consistent with previous research that shows that pain is common in MS, that it is severe in a substantial subset of these individuals and has the potential to negatively impact physical and psychosocial functioning over and above the effects of MS itself.

Source

So there you go some 2/3rds of people with MS experience pain.

Personally my whole headache thing recently would be the worst pain I have experienced that could be related to the disease. Followed by the spastic shoulder and neck muscles, then the burning skin. Oh yeah, and the eye pain in light. But that is about it, take a Mercandol when it gets too bad and go to bed is my motto.

PALO ALTO, Calif. (MCT) - The first $45 million in state money for stem cell research has been allocated to medical researchers, Calif. Gov. Arnold Schwarzenegger announced Friday.The money is part of the state’s commitment to stem cell research to treat or cure spinal cord injuries and diseases such as multiple sclerosis, Parkinson’s disease and Alzheimer’s.

Voters authorized Proposition 71, a $3 billion bond for stem cell research, in November 2004. Despite challenges to the initiative, the governor authorized the state in July 2006 to issue a loan of up to $150 million for stem cell research.”Today we are making history,” Schwarzenegger said. “(Scientists) are opening up possibilities that a few years ago we could only imagine.”

Schwarzenegger talked about the millions of people who would benefit from stem cell research, including his father-in-law, who suffers from Alzheimer’s.”

The initial grants are important because we all know that we cannot afford to wait when it comes to advancing potentially life-saving science,” Schwarzenegger said in a statement.

Schwarzenegger made the announcement in Burlingame, Calif., where the California Institute for Regenerative Medicine’s (CIRM) board met to decide how to allocate the money.”In one day, California made a dramatic step forward,” said Robert Klein, chairman of CIRM’s board.

After President George Bush vetoed federal stem cell legislation in July, Schwarzenegger came to the rescue with the $150 million, Klein said.
Bush cited concerns that the legislation would “fund the deliberate destruction of human embryos” for stem cell research.When asked about Bush’s opposition to stem cell research, Schwarzenegger said, “I am just interested in the decisions we make here.”

Schwarzenegger defies president, puts $45 million toward stem cell research - National News

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People who have multiple sclerosis (MS) for 10 years and have few of the disabling symptoms of the disease are often told they have “benign MS” and that their symptoms will likely not ever occur to the same extent as other people with MS. A new study, published in the February 13, 2007, issue of Neurology®, the scientific journal of the American Academy of Neurology, shows that unfortunately this may not be correct.

After 20 years, the disease had progressed in nearly half of those whose MS was benign at 10 years, according to the study.The study of 169 people whose MS was benign after 10 years found that after 20 years the disease had progressed in 21 percent to the extent that they needed a cane to walk.

Most of the patients had the relapsing-remitting form of the disease, where symptoms come and go. But after 20 years, about 20 percent of the people had developed the secondary-progressive form of the disease, where the disease steadily progresses.

Read More Here

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Recently added to YouTube or other places

The results of the green room book auction on Today

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Health Minute on CNN
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YouTube additions re MS Society Movement Campaign