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Saturday, August 15, 2009

Multiple Sclerosis Isolation & Depression - A Patients' Video Story

Wondering if others are having a hard time not having daily interaction with people due to loss of job, friends or family. Want input if anyone would be interested in a MS Vlog support group.

Click here , to see my Video Story and then please leave your comments. Your input is being asked.

Best, Andrea


If others have videos to be uploaded to this blog, please send the information to Stuart -

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MS Related: Vitamin D, Feeling Depressed, The Heat and more

Information found here provided by Dana in Florida:

Vitamin D May Lessen MS Risk
Researchers report that getting enough vitamin D early in life may lower the odds of developing multiple sclerosis.
Also See:
Feeling Down in America: Antidepressant Use Up
Floral Scent Reduces Stress

Helping People With MS Beat the Heat
Researchers are looking at ways to help people with MS tolerate hot weather and ease debilitating symptoms.
Also See:
Match Sunscreen to Your Lifestyle
6 Health Mistakes Smart People Make

Want More About MS?
Would you like to receive free offers, coupons, and medical insights from MS-friendly sponsors at WebMD? Click 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

Family's wheels turning together to fight multiple sclerosis


T-G Staff Writer

Biking has always been a part of Karl Spicker's life. When he was young, it was his mode of transportation. When he got married and had a daughter old enough to be interested, it became a hobby.

Today, there's a little more at stake.

Karl has multiple sclerosis. He can't ride a bike anymore, but at this weekend's annual Bike MS event, 12 family members and friends will bike in his honor.

Karl's wife, Anne, biked alone in the event last year and decided to organize a team for this year's ride. Eight family members and four friends -- who come from Ohio, Indiana and California -- will ride 150 miles from Middleburg Heights to Sandusky. The team has raised more than $16,000 so far and eight members bought new bikes just for the event.

Anne and Karl designed jerseys with the team's name, Spinners for the Cure, and Mid-Ohio Graphics printed the shirts.

Click this, to continue reading


Friday, August 14, 2009

Hard To Treat Diseases (HTDS.PK) Scientists present encouraging results for the future of Multiple Sclerosis treatment.

Posted on: Friday, 14 August 2009, 08:21 CDT

BELGRADE, SERBIA, Aug. 14 /PRNewswire-FirstCall/ - Hard to Treat Diseases, Inc. (HTDS:PK), announced today that there is great progress being made with the experimental findings to aid in the suppression or ultimately the cure of Multiple Sclerosis not only in their lab in Belgrade, but around the world. (See unauthorized news link)

In a recent study posted on Aug. 12, 2009 scientists have reversed the Multiple Sclerosis in mice. The study showed the suppression of the immune cells, forcing remission and reversing the disease in mice.

Multiple Sclerosis attacks the central nervous system. The researchers explained that "The new treatment, called GIFT15, is composed of two proteins, GSM-CSF and interleukin-15, that are fused in the lab. Normally, the individual proteins act to stimulate the immune system, but when they're stuck together, the proteins suppress immune response, the researchers explained. They do this by converting B-cells -- a type of white blood cell normally involved in immune response -- into immune suppressive cells."

Dr. Jacques Galipeau and his collegues of the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal, took normal B-cells from mice and sprinkled GIFT-15 on the B-cells and when this was given in a single dose intravenously back to the mice that were ill with Multiple sclerosis not only did the disease go away but no significant side effects were seen in the mice as per the researchers.


Relapsing MS Treatment:Stop Wishing, Start Learning - with this Virtual Experience

Learn of treatments options thru this WebMD program:

MS Treatment Options

Head to Head studies and more


Thursday, August 13, 2009

Researchers successfully reverse multiple sclerosis in animals

New immune-suppressing treatment forces the disease into remission in mice

Click here to read what you might have missed
(previously posted on August 11th)

and here is another link to another article of this well deserved research


Wednesday, August 12, 2009

A Patients' story of her journey with a Clinical Trial drug for Multiple Sclerosis

Jane's Story

Light at the End of the MS Tunnel

This is an account of my participation in a clinical trial to treat Multiple Sclerosis with high dose cyclophosphamide. (chemo)

Click the above link to read Jane's journal

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


MS Lifelines® Helps you to manage your MS with many programs

Register at MSLifeLines®

See the link found below to learn of MS programs being held in your local area

Peer Connection
Speak one-on-one with someone who can provide their perspective on what it's like to live with relapsing MS and take Rebif therapy.
MS In Balance: Talk MS
Check out our exciting new monthly video series.
On-Demand Programming
Watch some of our most popular programs.

Local Events
Find out if there is a C.H.A.T. About MS or local MS program in your area.

Save the date! See a listing of our upcoming webevents.

We also have a number of archived webevents to view at your convenience.

Talk MS provides practical tips to live well

MS In BalanceSM webevent series is pleased to present upcoming releases
for Talk MS — a dynamic monthly online video series designed to help you live well with MS. talk- ms

  • just 30 minutes a month
  • conversational talk show format
  • a new video the 4th Wednesday of every month
  • an opportunity to submit your questions the day a program is released

Register today! And remember, when you tune in the 4th Wednesday of every month, you will have a chance to submit questions that may be answered in a future Talk MS program!

Phone registration is no longer available for MS In Balance webevents. Registration is only available online.

For more support, call MS LifeLines toll-free at 1-877-447-3243

Support limiting out-of-pocket drug costs

Help make MS drugs more affordable
People with MS depend on access to affordable disease modifying therapies for improving and maintaining their quality of life. The annual cost of these drugs can exceed $30,000 with some people paying more than $800 a month out-of-pocket for access to these important drugs.

Click here to ask your Senator to co-sponsor the Affordable Access to Prescription Medications Act (S. 1630).

Last week, Senator John Rockefeller, IV (WV) introduced the Affordable Access to Prescription Medications Act (S. 1630). This bill seeks to cap out-of-pocket costs at $200 per month per prescription and $500 a month for all prescription medications. This would apply to all health insurance plans including Medicare and private market plans. It is important for you to send your Senator a message asking them to support this essential legislation.

People with MS rely on access to these vital drugs in order to live active and productive lives. Many people with MS are often forced to stop their prescribed therapy because they cannot afford the out-of-pocket costs associated with their medications. These high out-of-pocket costs impose a significant burden on a patient, whose health depends on expensive drugs and constitutes an undue and unjust discrimination based on their disease, disability, or condition.

High out-of-pocket costs place a significant barrier to access of these medically necessary drugs. Capping monthly out-of-pocket drug costs at $200 per month per prescription and $500 a month for all prescription medications is a great step that can bring piece of mind to not only people with MS, but all Americans who are struggling with rising out-of-pocket drug costs.

Send your e-mail today! Click here.

This was an MS Action Alert

Take Advantage of what MS Active Source® offers

Word Scramble, Path Memory and Sudoku
MS Active Source® helps you to take control.
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Tuesday, August 11, 2009

The Myelin Repair Foundation: Breaking down barriers in research and in communication

Press Release - Aug 11, 2009

current drug development system is failing us. Despite an increase in government, non-profit and corporate dollars spent on research, the number of new drugs has not kept pace. Multiple sclerosis therapies have not been an exception. As many patients wait years for treatments that can alleviate their symptoms and/or halt the disease, they suffer.

The Myelin Repair Foundation (MRF) [ Link: ] is pioneering a groundbreaking model for an academia-industry collaboration that will lead to multiple sclerosis treatment–myelin repair.
Unbounded by traditional medical research models, the Myelin Repair Foundation (MRF) established the potential of myelin repair as an alternative to current immunosuppressant therapies for multiple sclerosis and has shown that thinking outside the traditional model for medical research and drug development works.

The MRF recently started a blog [Link:] to encourage timely conversations with supporters interested in their myelin repair research and in their medical research model. Much can be learned from their model. We need spread the ideas to other organizations that want to speed up the development of treatments or cures.

They are also interested in continual learning and improvement to improve their research and so they want your input. Give them ideas, criticisms or feedback to assist in developing a myelin repair treatment for MS patients more quickly. Inform them about other organizations’s research plans and how they are approaching the cure or treatment of their disease.

Join the discussion and help break down the barriers that are slowing medical research for all diseases.


MS News ALERT- McGill/JGH researchers successfully reverse multiple sclerosis in animals

New immune-suppressing treatment forces the disease into remission in mice

This release is available in French.

Published: August 11, 2009

A new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal.

MS is an autoimmune disease in which the body's own immune response attacks the central nervous system, almost as if the body had become allergic to itself, leading to progressive physical and cognitive disability.

The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.

GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.

GIFT15 is composed of two proteins, GSM-CSF and interleukin-15, fused together artificially in the lab. Under normal circumstances, the individual proteins usually act to stimulate the immune system, but in their fused form, the equation reverses itself.

"You know those mythical animals that have the head of an eagle and the body of a lion? They're called chimeras. In a lyrical sense, that's what we've created," said Galipeau, a world-renowned expert in cell regeneration affiliated with the Segal Cancer Centre at the Jewish General and McGill's Centre for Translational Research. "GIFT15 is a new protein hormone composed of two distinct proteins, and when they're stuck together they lead to a completely unexpected biological effect."

This effect, explained Galipeau, converts B-cells -- a common form of white blood cell normally involved in immune response -- into powerful immune-suppressive cells. Unlike their better-known cousins, T-cells, naturally-occurring immune-suppressing B-cells are almost unknown in nature and the notion of using them to control immunity is very new.

"GIFT15 can take your normal, run-of-the-mill B-cells and convert them -- in a Superman or Jekyll -Hyde sort of way -- into these super-powerful B-regulatory cells," Galipeau explained. "We can do that in a petri dish. We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect.

"And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away."

MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.

"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."



Source : Eureka Alerts

MS related: Potential treatment for neuropathic pain

Article Source:

A study has identified a molecule that could potentially lead to a new treatment for neuropathic pain, a symptom commonly experienced by people with MS.

To read more, as reported by the UK MS Society, click here.

Information resourced and posted here by: Stuart Schlossman


Monday, August 10, 2009


Cover Story: When a Driver has MS
by Patricia Wadsley

When Belkis Diaz was diagnosed in 2005, one of the first things she worried about was her driving.
“I had two young kids and I had to have a way to get them to school and the doctors,” said the Skokie, Ill., wife and mother. “I knew I had to continue driving. Then when I got pregnant with my third child, I needed my car even more. But when my symptoms started to act up, I was at a crossroads.”

For Diaz, and for many other people with MS, driving is a lifeline. It enables us to go to work,
connect with friends, take care of our families, do errands, go to church—and, most of all, keep from
being isolated. When MS enters the picture, bringing such symptoms as fatigue, memory loss, muscle
weakness and poor coordination—some people wonder if they should continue to drive.

Continue reading by clicking here to View as PDF

article includes assistive devices for driving with physical limitations

Review this story at our website

Proposed legislation could save patients thousands of dollars in out-of-pocket medical costs
August 10, 1:57 PM- NY Disability Examiner - Tom Scott

Legislation introduced by Senator John D. Rockefeller IV (WV) may help ensure that expensive medications are made more affordable to many Americans.

The Affordable Access to Prescription Medications Act of 2009, would cap monthly out-of-pocket costs for medications, including drugs under Medicare Part D and those in the private insurance market.
Opponents of health insurance practices have argued that numerous insurers are moving drugs critical to the health and quality of life of thousands of patients, including those with multiple sclerosis (MS) and spinal cord injuries (SCI), onto specialty tiers.
Unlike the first three tiers of a drug formulary (list of prescription medications that a drug plan will pay for), drugs on the fourth or specialty tier imposes an out-of-pocket cost of 20 to 35 percent. The drugs included on this tier are often the ones that many individuals rely on the most, however, are unable to afford.

This new legislation would create a monthly $200 per medication cap on all out-of-pocket prescription drug costs and a monthly $500 per person cap for those taking more than one medication.

Click here to continue from the 6th paragraph


Research news: How Dr. David Miller revolutionized our understanding of MS

How Dr. David Miller revolutionized our understanding of MS
by Sara Bernstein

The John Dystel Prize for MS Research is awarded for outstanding contributions to research in understanding, treating, or preventing multiple sclerosis. Few people have affected our understanding of MS more than the 2009 winner of this prize, Professor David H. Miller, MD, FRCP (Institute of Neurology, University College London). Dr. Miller’s research on the imaging of MS—creating a window to the brain and spinal cord with MRI and other techniques—substantially changed how we think about the disease, and how we study its course.

Picturing people with MS
Dr. Miller’s interest in MS imaging began early in his career. “When I was completing my clinical training in neurology in the mid 1980s, the opportunity came up to be a research fellow in the newly created Nuclear Magnetic Resonance (another name for MRI) Research Unit at the Institute of Neurology in London,” he said. “I was very impressed by how sensitive MRI was at showing tissue damage in MS. I had an excellent supervisor and mentor in Professor Ian McDonald and enjoyed those two years a lot—so I have since continued in that field.”

View this PDF to continue


The skinny on the Swank MS Diet

The skinny on the Swank MS Diet
by Marcella Durand

In the hopes of treating MS, people with the disease sometimes wonder why MS researchers seem so hesitant to endorse nutritional changes such as the Swank or McDougall low-fat diets. After all, studies have shown that eating more vegetables—and fewer deep-fried Twinkies—is good for your health. And doesn’t your health include MS?

While a low-fat diet is certainly beneficial for overall health, the specific impact of fats on MS is not as clear. Do saturated fats speed the development of brain lesions? Do unsaturated fats protect brain tissue?

And if it were to be substantially proven that saturated fat impacts the course of MS, how strict a diet would people need to follow in order to see improvement? Would an occasional slip-up, like a piece of cake at a birthday party, be OK? Or would it literally go right to your head?

To read this exceptional article found in the National MS Society's 2009 Fall Momentum magazine.. Click: View as PDF

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Dietary patterns in clinical subtypes of multiple sclerosis: an exploratory study

Backround. Multiple sclerosis is a neurodegenerative disorder with a wide range in disease course severity.

Many factors seem to be implicated in multiple sclerosis disease course, and diet has been suggested to play a role. Because limited data is present in the literature it was investigated whether variations in dietary intake may be related to the severity of the disease course in multiple sclerosis.

Methods: Using a food diary during 14 days, the dietary intake of 23 nutrients and vitamins was measured in patients with primary progressive (n = 21), secondary progressive (n = 32), and benign multiple sclerosis (n = 27) and compared to each other.

The intake measured was also compared to the intake of the Dutch population and to the recommended daily allowance.

Results: Compared to the other MS groups, the secondary progressive MS patients had a lower intake of magnesium, calcium and iron. The total group of MS patients had, compared to the Dutch population, a lower intake of folate, magnesium and copper and a lower energy intake.

Compared to the daily recommended allowance, the MS patients had a lower than recommended intake of folic acid, magnesium, zinc and selenium.

Conclusion: Magnesium, calcium and iron intake may possibly be related to MS disease progression, and should receive further attention. This is important because no effective neuroprotective treatment for MS patients is available.

Author: Geeta RamsaransingSanne MellemaJacques De Keyser
Credits/Source: Nutrition Journal 2009, 8:36

Information source: 7th Space


What is, and What Causes Trigeminal Neuralgia?

Aug 10, 2009

Trigeminal Neuralgia, also known as Tic Douloureaux, is a nerve disorder that causes abrupt, searing, electric-shock-like facial pains, most commonly the pain involves the lower face and jaw, but symptoms may appear near the nose, ears, eyes or lips. Many experts say trigeminal neuralgia is the most unbearably painful human condition.

Neuralgia is severe pain along the course of a nerve. The pain occurs because of a change in neurological structure or function due to irritation or damage of a nerve.

Approximately 1 in every 15,000 people is estimated to suffer from trigeminal neuralgia. About 45,000 people have trigeminal neuralgia in the USA. It is thought to affect about one million people worldwide.

Continue reading by clicking here.

A New Hope for MS Patients?

Elizabeth Kinder is one of only 16 people in the UK on a trial for the new multiple sclerosis drug, Fingolimod. Here she explains why she is feeling positive.

The first time it happened I was awake all night with a sharp feeling of pins and needles in my face and hands, stabbing pains in my head, arms and legs, and what felt like electric shocks in my feet. Sleep was impossible. I was really scared. I was scared that when morning finally came I would have difficulty walking.

I had been feeling dizzy and disorientated for months, weirdly disconnected. It was often difficult to find the right words. My balance was affected, too. I described it to my doctor as "being in a goldfish bowl in a storm at sea" and ended up at the Cromwell Hospital in the consulting room of Dr Omar Malik, a brilliant neurologist, afraid that I had a brain tumour.

Click here to continue reading


"Soon after his mother’s diagnosis, he learned that we had to play by the rules of MS"

Tommy Weeks: A selfless son helps mom hit by MS
Written by Karen E. Butler
Monday, 10 August 2009

Ten-year-old Tommy Weeks sat silently on the sofa next to his dad who gently explained to his young son that Mommy had been diagnosed with multiple sclerosis. Not able to grasp fully the ramifications of such a diagnosis but discerning enough to understanding life would never be the same for his mother, the dark haired lad had just one question.

“Is MS contagious?” he whispered haltingly to his father.

Today Mr. Weeks is 18 years old and college-bound. He enters adulthood understanding full well the effects MS can have on a family. Growing up, his friends concentrated on pursuits and activities consistent with their maturity. Mr. Weeks, however, discovered early on what it means to be truly responsible, empathic and selfless.

Continue to read, by clicking here
source: The Ridgefield Press


Eye exams help detect diabetes, multiple sclerosis

Sun, 08/09/2009 - Fox21 News

By Nicolette Helling & photojournalist John Thain, FOX 21 News

Click here to read and view a video


Sunday, August 9, 2009

A site to visit when seeking Multiple Sclerosis information

Resourced Weblinks for the benefit of those wanting further Multiple Sclerosis information
can be found on the MS Views and News website
See what else is available from this website that help to bridge the gap of MS information from many resources.

information provided by:
Stuart Schlossman - RRMS

Elan battling against divorce from Biogen

August 10, 2009 Dublin - The honeymoon between Elan and Biogen has been over for a long time, now the marriage of the Irish biotech company and their US partner lies in ruins. The Elan Corporation has filed suit against Biogen Idec Inc. In the Federal Court in New York seeking declaratory and injunctive relief to prevent Biogen Idec from terminating the partnership for Tysabri natalizumab.

In a letter to Elan dated July 28, 2009, Biogen Idec alleged that Elan was in material breach of the Collaboration Agreement by granting Johnson & Johnson an option to finance Elan's purchase of Biogen Idec's 50% interest in Tysabri if Biogen Idec is acquired. Biogen Idec claimed that Elan assigned rights to Tysabri without Biogen Idec's consent, which Elan denies. Biogen's letter triggered a 60-day period ending Sept. 26, after which Biogen Idec may seek to terminate the Tysabri deal. Elan is defiant and wants to close the transaction with Johnson & Johnson as soon as possible.

A year ago the relationship between Eland and Biogen was still functional. The two companies celebrated the second anniversary of Tysabri for the treatment of MS. In September 2008 Elan and Biogen announced the start of a clinical trial for the use of the antibody in the treatment of relapsed or refractory multiple myeloma.

Tysabri is a treatment approved for relapsing forms of MS in the United States and relapsing-remitting MS in the European Union. The recombinant, humanized monoclonal antibody targets the adhesion molecule VLA4 (also known as alpha-4 integrin) that is expressed on the surface of many types of immune cells.

source: Euro BioTechnology