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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, June 12, 2010

Join D Action to help solve Worldwide Vitamin D Deficiency

Information for this grassroots site was provided by Jim G. in California




A Consortium Of Scientists, Institutions And Individuals Committed 

To Solving The Worldwide Vitamin D Deficiency Epidemic

The Daction project is an international public health project to solve the
 vitamin D deficiency epidemic. The major components of the project are


Education:
Diagnosis & Treatment of Vitamin D Deficiency seminars.
Contact us to sponsor seminars in your community.
carole@grassrootshealth.org 


Tours to educate the public and health care personnel in brief  (1-2 hour)
presentations about the epidemic and recommended actions.

Exhibits at major medical conferences.
Testing of vitamin D levels
GrassrootsHealth is sponsoring the use of blood spot test kits
 (laboratory analysis done by ZRT Labs) for a $60.00 fee to each
individual. The tests are to be done twice a year by each individual
along with the submission of some basic health data. The kits are
 not available as a ‘stand alone’ without health data.
A 5 year study will be done with the data
accumulated from the individuals tested to evaluate the results of
the program in disease prevention and to help create a long term
plan for public health.
Medical institutions and groups are encouraged to contact
Carole Baggerly, Director,carole@grassrootshealth.org
to discuss how they can participate with their health plan participants.

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Friday, June 11, 2010

FDA Panel Recommends Approval of Oral Fingolimod for Relapsing MS

Jun 10, 2010

FDA Panel Recommends Approval of Oral Fingolimod for Relapsing MS -- If agency follows advice, it would become first oral disease-modifying therapy for MS


A U.S. Food and Drug Administration advisory committee today recommended that the agency approve marketing of fingolimod capsules (formerly called Gilenia, Novartis International AG) for the treatment of relapsing multiple sclerosis. If approved, fingolimod would be the first oral disease-modifying therapy for the treatment of MS. While the FDA is not required to follow the recommendations of its advisory committees, it usually does. According to Novartis, the agency is expected to make a final decision about whether to approve the drug in September 2010.


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Novartis Gains Support for First Pill to Treat Multiple Sclerosis

By Catherine Larkin
June 10 (Bloomberg) -- Novartis AG won a U.S. panel’s backing to introduce the first pill to treat multiple sclerosis as an alternative to injectable drugs led by Biogen Idec Inc.’s Avonex and Teva Pharmaceutical Industries Ltd.’s Copaxone.
Novartis’s Gilenia should be “generally recommended” as an initial treatment for MS, not just when other drugs fail, outside advisers to the Food and Drug Administration said in a 21-3 vote today in Silver Spring, Maryland. The panel voted unanimously in favor of the pill’s safety and effectiveness, while saying a lower dose should be tested after approval.
The Swiss drugmaker has been in a race with Merck KGaA to sell the first pill to delay progression of MS. The neurological disease affects 2.5 million people worldwide, many of whom have trouble sticking with current therapies because they’re difficult to use or have side effects, according to the National Multiple Sclerosis Society, a New York-based patient group.
“This is an enormously effective drug,” said Cynthia Sitcov, the panel’s patient representative. “I hope the agency approves it at the current dose.”


Continue



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Thursday, June 10, 2010

“What’s new in MS research and treatment” - an MS Society webcast

Registration opens today for the live webcast “What’s new in MS research and treatment” scheduled for June 30, 1:00 – 2:30 p.m. ET


Topics include:
  • Oral and new disease modifying therapies in the pipeline
  • Nervous system repair and protection research underway
  • International overview of chronic cerebrospinal venous insufficiency (CCSVI) research

Learn about the panelists and register at www.nationalMSsociety.org/june30webcast


The NMSS now has RSS feeds on their news page www.nationalMSsociety.org/news to help keep you informed of Society and breaking MS news as it happens.




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Simple Eye Test ( OCT ) Measures Damage from Multiple Sclerosis

(HealthNewsDigest.com) - DALLAS - June 8, 2010 - A quick, painless eye measurement shows promise as a way to diagnose multiple sclerosis in its very early stages, and to track the effectiveness of treatments, researchers from UT Southwestern Medical Center have found in a multicenter study. 

"This technique has the potential to provide a powerful and reliable assessment strategy to measure structural changes in the central nervous system, both for diagnostic purposes and in clinical trials to monitor whether potential treatments can prevent deterioration or restore nerve function," said Dr. Elliot Frohman, professor of neurology and ophthalmology, director of the Multiple Sclerosis Clinical Center at UT Southwestern and co-senior author of the study, which appears in the June issue of Annals of Neurology.

The technique, called optical coherence tomography (OCT), reliably measures thinning of the retina in people with multiple sclerosis, the researchers found. 

"An ophthalmologist might someday be able to use OCT to identify retinal thinning during a routine eye exam and consider MS as a prime diagnosis," Dr. Frohman said. "However, this prospect is a long way off."

The retina, which lines the back of the eye, detects light and sends visual information to the brain via the optic nerve. Retinal thinning can occur as a result of multiple sclerosis, but this study, Dr. Frohman said, is the first to track such thinning over time in a single group of patients. The Neurology study involved 299 patients with MS who were tracked for six months to 4.5 years. 


READ MORE, click here

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Wednesday, June 9, 2010

Pink Door's "la padrona": I have MS, and life's still a cabaret

Posted by Nancy Leson - June 8, 2010

For the Pink Door's "la padrona" -- stage name Jacquelina di Roberto -- life is a cabaret: literally. At her Post Alley trattoria, Jackie Roberts opens the pink door to anyone willing to step through it and buy into the magic. That magic, the one she's been selling for nearly 30 years, is food, drink and entertainment. The Pink Door's mood owns the spotlight here in Pike Place Market, taking its musical cue from the theater, cabaret culture, bawdy burlesque.
Why, yes, that is a trapeze artist swinging from the rafters while you eat your antipasti. And no, this is not Teatro ZinZanni, but its lower-key forerunner: a ristorante e bar known for its flamboyant owner, its romantic rooftop overlooking Elliott Bay and its enormous entertainment value. Willkommen to the Pink Door, kept very much alive by a padrona whose taste for life is insatiable, though that life has taken a turn since she was diagnosed six months ago with Multiple Sclerosis.

 
The Pink Door's Jacquelina di Roberto says, "Life is a cabaret. Or a cabernet. Whichever comes first!" [photo of Jackie by Steve Smrstik]
"I'm the original bon vivant about sensuality and living in the world of taste and smell," Jackie told me. And when she lost her sense of taste and smell two years ago, "It was a big change in who I am." Other symptoms followed, "but because MS is multi-factorial, there were symptoms I didn't know were MS." Initially, "I thought those symptoms, including insomnia, were just due to the lifestyle of a restaurant owner": too much good wine, not enough good sleep.

Read more of Jackie's story.  
Her naturopathic approach to her disease, and of CCVSI by clicking here.


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Recommendations on Vitamin D use in Multiple Sclerosis

From the Annual meeting of the Consortium of Multiple Sclerosis Centers
June 2-5, 2010 San Antonio Texas

Information provided by: Cherie C. Binns RN BS MSCN


In a talk given by Alan Bowling, MD PhD of the Colorado Neurological Institute in Englewood, Co, Vitamin D usage in Patients with MS was revisited.

For several years now, it has been felt that Vitamin D has a neuroprotective effect on the Central Nervous System in persons with MS and that most of these people test low or deficient in Vitamin D Levels. Supplementation has been thought to be helpful in protecting against further axonal damage and even potentially prevent relapses. To date, Vitamin D has been believed to be free of major adverse side effects and is safe in even high doses of up to 10,000 IU daily for long periods of time. There is anecdotal evidence that persons with MS (PWMS) report feeling better with a reduction in neurological symptoms while on high doses of this vitamin.





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"Mountaineer and Competitive Runner Wendy Booker: Tackling Multiple Sclerosis with Mountains and Marathons"


Posted June 9, 2010
Wendy Booker’s energy seems endless – it takes more than running marathons, scaling the "Seven Summits," and multiple sclerosis (MS) to tame her drive for success.
In June of 1998, the mother of three was diagnosed with relapsing-remitting MS (RRMS) after experiencing balance problems, blurred vision and numbness on her left side. Upon being diagnosed, Wendy never thought she was within 10 years of becoming one of less than 30 women in the world to have scaled the "Seven Summits," the collective term for the highest mountain on each continent.
With her sights set high, Wendy committed to a healthy diet, exercise and COPAXONE® (glatiramer acetate injection) in an effort to one day complete her conquest with the summit of Mt. Everest, the highest mountain in the world. With the culmination of this 29,035-foot climb, in addition to her many other accomplishments, Wendy will have shown others how resilient a person with MS can be. Despite the fact that the average mountain climber is generally a male in his thirties, Wendy believes that by leading through example, she may eventually inspire others to also meet their own obstacles head on.
Continue reading this story, by clicking here

READ STUART's Q&A with Wendy by clicking here



 
   

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Hormone Therapies and Breast feeding in the MS Population

Notes from the Consortium of Multiple Sclerosis Centers Annual Meeting in San Antonio, TX June 2-5, 2010

These observations are taken from my notes of educational offerings provided at this conference and may not represent the entire message the presenters intended to convey.
Cherie C. Binns RN BS MSCN

A Symposia entitled “Gender Specific Concerns in MS”,
Nancy L. Sicotte MD
Faculty at the David Geffen School of Medicine at UCLA
Los Angeles, California
AND
Barbara Geisser, MD
Faculty at UCLA
Los Angeles, California

In this symposia, strategies for tailoring therapies to gender specific needs were addressed.  The primary sex hormones Estrogen and Testosterone have long been thought to “normalize” Multiple Sclerosis events in patients when given in dosing that promotes healthy hormone levels.

After years of noting that women in their third trimester of pregnancy who had Multiple Sclerosis did very well with few to no relapses and minimal disease impact, Researchers began to look at the pregnancy-specific estrogen we call Estridol.  The only time this hormone is produced in the human body is during pregnancy and years of study of the pregnant population has confirmed that Estridol seems to have a neuroprotective effect in Multiple Sclerosis.  Low dose supplementation at times other than pregnancy appears to replicate the benefits found in the pregnant patient.  It is to be noted that this supplementation sustains what is considered to be “normal” third trimester levels of the hormone and does not exceed those levels.  In trials to date, this hormone shows significant statistical benefit in reducing the rate and severity of MS relapses.

Correspondingly, testosterone levels in male MS subjects was explored.  During times of disease progression and relapse many of the subjects produced lower than normal levels of this hormone and when supplemented to a higher “normal range” there was a significant impact shown which decreased  frequency and severity of relapse in the male population.  

Neither of these hormones is  being tested in the Multiple Sclerosis patient over the age of 50 (fifty) as they both taper off by that age in the general population.

There was considerable discussion as to whether it was beneficial to place a woman on her Disease Modifying Therapy (DMT) immediately after the delivery of her child since statistically there is a 75-80% risk of relapse in the 3-6 months Postpartum thought to be due to a drop of pregnancy hormones.  This group of women is being studied for Estridol supplementation but the addition of the hormone has potential to affect the newborn if s/he is breast feeding from a mother who is receiving supplementation.

In tracking hormone levels and relapse rates in women who chose to breast feed their newborn babies rather than bottle feed and go back on DMT therapy, the hormone Estridol did remain slightly elevated and the woman remained relapse free for up to six months of the study if breast feeding exclusively and not supplementing with formula or baby food.

If a woman who has Multiple Sclerosis and wishes to nurse her newborn makes a commitment to exclusive breast feeding with no food or formula supplementation for a period of six months, relapse rate is minimal to non-existent.   This effect could be more long standing for those wishing to nurse their babies for longer periods but studies have not been done in this nursing population.  The recommendation still remains that once a woman has weaned her child , she immediately resume DMT use unless she is already pregnant again or is trying to become pregnant.

None of the Disease Modifying Therapies is recommended for pregnant or nursing women.

For Men with Multiple Sclerosis who are attempting to father a child, testosterone levels may be lowered to not produce adequate number and motility of sperm while on a DMT.   Some men have had success impregnating partners by coming off DMTs for a period of time and supplementing with low dose Testosterone and once the pregnancy is confirmed and deemed healthy, will return to DMT use.

There are currently clinical trials looking for men or women under the age of 50 who have Multiple Sclerosis and are interested in trying Testosterone or Estridol therapies to minimize frequency and severity of relapse in MS.  For more information on trials in your area, go to www.clinicaltrials.gov and when on the home page type “Multiple Sclerosis” into the search area.   Once there, further narrow your search with either the word “Estridol” or “Testosterone”.


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