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Friday, October 5, 2012

David Osmond: Talent, and MS, runs in the family

Executive director Carrie Nolan welcomes David Osmond to the National MS Society’s Women on the Move Luncheon. Photo: Joanne Davidson, The Denver Post
Just like Donny and Marie(his aunt and uncle), David Osmond has a smile so bright you need sunglasses to look directly at it. And, like so many others in the Osmondclan, he has a great singing voice and stage presence.
He also has multiple sclerosis, diagnosed when he was 26. His father, Alan, oldest of the performing Osmonds and producer of Donny and Marie’s TV show, also has MS.
His solo career was really taking off, but the chronic disease for which there is no cure caused him to put everything on hold. He first noticed the symptoms on Christmas Eve 2005: pain that began in his feet and eventually enveloped his body, causing paralysis that landed him in a wheelchair and compromised his breathing and his eyesight.


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More patients linked to fungal meningitis infections, CDC says

A News worthy item -

By Miriam Falco, CNN
updated 7:41 PM EDT, Fri October 5, 2012
Watch this video

(CNN) -- Forty-seven people in seven states are now confirmed to have fungal meningitis, the Centers for Disease Control and Prevention reported Friday, 12 more than the day before.

The death toll hasn't risen. So far, five people have died after having a preservative-free steroid called methylprednisolone acetate contaminated by a fungus injected into their spine. Michigan, the latest state to find patients sickened by the drug is reporting four cases.

Physicians and clinics in 23 states are reviewing patient records to determine which patients may have received injections contaminated with a fungus. The Greenspring Surgery Center in Baltimore, Maryland, has determined that 300 patients received injections with the recalled drug -- manufactured by New England Compounding Center in Framingham, Massachusetts.

Robert Eisenberg, who is a nurse/administrator at the Baltimore facility told CNN no Greenspring patients are among the two confirmed cases in Maryland.

"Our doctors used it as standard medication," he said. "We trust that all drug manufacturers provide drugs that are safe for our patients. We are very disappointed that in this particular instance they were not safe and put our patients at risk."


Multiple Sclerosis (MS) specialty drug treatment cost projected to exceed $50,000 per person per year in 2016

ST. PAUL, Minn., Oct. 4, 2012 /PRNewswire/ -- A new study by pharmacy benefit manager Prime Therapeutics (Prime), in collaboration with Blue Cross and Blue Shield of Minnesota, found that the recent dramatic increase in Multiple Sclerosis (MS) specialty drug costs has resulted in the drug costs now accounting for more than two-thirds of the patients total cost of care. While many with MS have seen improved quality of life as a result of drug therapy, unfortunately these MS specialty drug cost increases were not associated with MS medical costs declining. These study findings will be presented today at the Academy of Managed Care Pharmacy's 2012 Educational Conference in Cincinnati, Ohio.
According to the study, the average individual annual MS specialty drug cost was $28,152 and all other health care costs were $13,608 in 2010. The price for MS self-injectable specialty drugs has increased 16.3% to 22.6% each year from 2008 to present, calculated using the compound annual growth rate (CAGR). Assuming the same inflationary MS specialty drug price increases, within four years, the average annual cost for a MS specialty drug will exceed $50,000.


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Researchers a step closer to controlling inflammation in MS

University of Adelaide researcher has published results that suggest a possible new mechanism to control multiple sclerosis (MS).

Dr Iain Comerford from the University's School of Molecular and Biomedical Science earned a three-year fellowship from MS Research Australia to work on this project. It is directed towards understanding how specific enzymes in cells of the immune system regulate immune cell activation and migration.

Along with his colleagues, Professor Shaun McColl and PhD students Wendel Litchfield and Ervin Kara, he focused on a molecule known as PI3Kgamma, which is involved in the activation and movement of white blood cells.

"There's already been worldwide interest in PI3Kgamma in relation to other human inflammatory disorders, such as diabetes and rheumatoid arthritis, and our study links this molecule and MS," said Dr Comerford, who is a Multiple Sclerosis Research Australia Fellow at the University of Adelaide.

Continue reading

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Thursday, October 4, 2012

Multiple Sclerosis: A New Approach to MS Diagnosis

Even though the long-term benefits are unclear, most people with MS would probably agree that they’d rather have fewer relapses and less disability, at least in the short term. That’s one of the reasons why doctors have recently modified the way in which they diagnose multiple sclerosis.
In the past, doctors usually waited for a second clinically isolated syndrome, or MS attack, before actually diagnosing the disease and starting therapy. But as a result of recent studies, they’ve made some changes. Two medical factors are used to diagnose multiple sclerosis:
  • A "clinically isolated syndrome." These are actual physical symptoms associated with multiple sclerosis that last at least 24 hours. This might be as dramatic as Williamson’s paralysis, or could be more subtle, like persistent numbness in one arm or leg, or a sudden loss of vision in one eye (known as optic neuritis).
  • Evidence of lesions on the brain. MS lesions are usually detected using magnetic resonance imaging. These lesions are caused when inflammation leads to the loss of myelin, the protective substance that insulates nerves in the brain and spinal cord.
A single clinically isolated syndrome is now enough to diagnose MS if doctors see the right kind of evidence on the MRI.
"Previously, once a person had an MS attack and you found evidence of MS lesions on the brain on an MRI, you’d have to wait and repeat that MRI to see if there were new lesions developing," Keegan says.
But that, too, has changed. In 2010, the group that establishes the procedures for diagnosing MS published new guidelines. "Now, patients who have had a single attack and have evidence of both old and new lesions on the initial MRI can be diagnosed with MS," Keegan says.

Which MS Treatment to Choose?


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Infertility Treatment May Worsen MS Symptoms

WebMD Health News
Reviewed by Louise Chang, MD

pregnant woman
Oct. 3, 2012 -- There is growing evidence that infertility treatments raise relapse rates in women with multiple sclerosis.
In a new study, 3 out of 4 women with MS had increased disease activity following assisted reproductive technology (ART) infertility treatments.
The study was small, with just 16 infertile MS patients getting the treatments.
But a second study with twice as many patients, published just a few months ago, also suggested that infertility treatments can bring on or worsen MS symptoms.
Timothy Coetzee, PhD, who is chief research officer for the National MS Society, says it is increasingly clear that hormones -- particularly sex hormones -- play an important role in MS.
“This research highlights an issue that needs further study,” he says. “When we manipulate hormones to achieve a pregnancy, there may be a significant impact on MS symptoms.”


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MS Timeline

Information provided to us from Maria Z., in Miami

St. Lidwina born in Holland; her progressive illness suggests a diagnosis of MS

Birth of Augustus d'Este, an early case of what would later be known as MS

Robert Carswell includes an illustration of a case of "a peculiar disease state," showing the features of MS

Jean-Martin Charcot gives three lectures describing the features of MS and names it "sclérose en plaque disseminée"

A series of cases are published in London by William Moxom

Numerous lectures and published case reports; optic neuritis andmyelitis described (1884); infection suggested as a cause (1884); family with 12 cases of MS described (1885); toxins suggested as a cause (1887)

The lumbar puncture technique is developed

Oligodendrocytes (cells that produce and maintain myelin) are described

A toxin tomyelin is suggested for the breakdown of myelin in plaques

James Dawson publishes his major work on the pathology of the MS plaque

Animal model of MS (EAE) is developed; folding wheelchair invented by Everest, allowing individuals with disabilities to travel by car and bring their wheelchair

Roy Swank develops lowfat diet for individuals with MS; first major study conducted in the US and Canada, funded by NMSS

First use of Cortisone to treat MS

Kutzke defines Disability Status Scale

Interferons are discovered

The initial criteria for diagnosis of MS is described

Thieme develops the electric mobility scooter

Acute MS flare-ups are treated with adrenocorticotropin

McDonald and Halliday show that conduction is slowed or blocked along demyelinated nerves and use evoked potential methods with MS

Jacobs gives interferon to MS patients intrathecally; McDonald and Halliday outline new diagnostic criteria for MS; oral baclofen approved to treat spasticity

Patterns of myelin repair are demonstrated by Prineas

Tegretol® is used to treat pain; Ditropan® is used to treat spastic bladder; as with most symptom management drugs, these are prescribed off-label

First MRI scan of the brain is performed and first MRI images of MS lesions produced; Jacobs reports reduced exacerbations with intrathecal interferon

Poser criteria described for MS; Epstein-Barr virus suspected of being involved with MS; Kurtzke introduces Expanded Disability Status Scale (EDSS)

Prozac® is approved to treat depression; first SSRI antidepressant

Medtronic® Synchromed™ pump and infusion system (implanted and programmable) receives premarket approval

Americans with Disabilities Act signed into law

Amantidine is used to treat fatigue

Betaseron® approved; Neurontin® approved to treat pain

Copaxone® approved

Avonex® approved

Provigil® approved to treat fatigue; Viagra® approved to treat sexual dysfunction

Novantrone® approved

Rebif® approved; Zanaflex® approved to treat spasticity in MS

Tysabri® approved

Extavia® approved; Gilenya™ approved; Botox® injection approved for adult upper-limb spasticity; Nuedexta™ approved for the treatment of pseudobulbar affect (PBA); Ampyra™ approved to improve walking in individuals with MS

Botox® injection approved for urinary incontinence in individuals with MS

Aubagio® approved

Possible approvals of Dimethyl Fumarate (DMF); Lemtrada™; ocrelizumab; daclizumab; Tovaxin®; laquinimod; and many more!

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Wednesday, October 3, 2012

LOW Vitamin D = Worse MS

Low blood levels of vitamin D are associated with an increased number of brain lesions and signs of a more active disease state in people with multiple sclerosis (MS), a new study finds, suggesting a potential link between intake of the vitamin and the risk of longer-term disability from the autoimmune disorder.

But researchers, led by Ellen M. Mowry, M.D., M.C.R., an assistant professor of neurology at the Johns Hopkins University School of Medicine and principal investigator of a multicenter clinical trial of vitamin D supplementation in MS patients, caution that more research is needed to determine if large doses of vitamin D help without harming MS patients.

Read more at 


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Tuesday, October 2, 2012

BREAKING NEWS: URGENT ATTENTION NEEDED concerning Acthar gel for MS and Aetna Medical insurance


  • Aetna medical insurance is considering no longer paying for the ACTHAR Gel for Multiple Sclerosis
  • Aetna is trying to prevent an FDA approved medication from being used by MS patients

Whether or not you have ever used Acthar or intend to use it in the future is not the issue.

THE ISSUE is that once a medical insurer stops paying for one medication, what is to stop them from halting insurance on other medications.

Learn about Acthar (also known as ACTH) here
Acthar is used by patients who cannot tolerate solumedrol.

THIS IS A CALL TO ACTION and YOUR assistance is needed

DOING ONE of the ABOVE will only take you a few minutes AND could result in this company NOT discriminating against an FDA approved medication.

If you call one of the above persons, know that you will need to leave a message either with a secretary or on their voicemail. 

Whether you are the patient or caregiver, Healthcare provider or just someone who cares, your Voice is needed to be heard or your email is needed to be read..

We suggest that you ask that ACTHAR GEL remain an available medication to the Multiple Sclerosis Community

EVERY CALL and EVERY Email has an impact. PLEASE RESPOND quickly as Aetna wants to make their decision by Mid-Month/ This month of October 2012


The information/ Request found above was sent from a private source who asks to remain anonymous


Optic Update: Retina's Thickness May Be Tied to Severity of MS, Study Suggests

If true, it might be a useful tool to measure the effectiveness of treatments

October 1, 2012

By Steven Reinberg
HealthDay Reporter
MONDAY, Oct. 1 (HealthDay News) -- Using a high-tech imaging process to measure the thickness of the eye's retina may one day predict the progression of multiple sclerosis, a new study suggests.
The finding might lead to better ways to judge the effectiveness of treatments because different parts of the retina seem to indicate different aspects of the disease and the toll it takes on different parts of the brain, the researchers said.
The report was published online Oct. 1 in the Archives of Neurology.
Multiple sclerosis is thought to be an autoimmune disease that attacks the central nervous system, which consists of the brain, the spinal cord and optic nerves. Symptoms range from mild effects, such as numbness in the limbs, to severe, such as paralysis or blindness.
"In treating multiple sclerosis we have been tremendously successful in reducing the number of attacks," said Dr. Ari Green, assistant clinical director of the Multiple Sclerosis Center at the University of California, San Francisco, and author of an accompanying editorial in the journal.
That's the inflammatory part of the disease, Green explained. "We are very successful at treating inflammation in multiple sclerosis. We are less successful in being able to treat or reverse disability," he said.
Methods that help speed up the testing of therapies are needed if progress in treating the disability caused by MS is going to happen, Green said.
And because the retina is part of the central nervous system, it's like a window to the brain and can provide a lot of information about different areas of the brain, he explained.
"If we can figure out how to properly use this imaging [called optical coherence tomography] -- perhaps with other tests -- for predicting disability in multiple sclerosis, we could accelerate therapies that could make a difference in patients' lives," Green said.
The retina is the light-sensitive layer of tissue at the back of the inner eye. It switches images to electric signals and sends them through the optic nerve to the brain.
For the new study, the researchers looked at the retinas of 84 patients with multiple sclerosis and compared them with 24 healthy people.
"The inner and outer retinal layer thickness, measured by optical coherence tomography, may reflect global and potentially distinct central nervous system processes in multiple sclerosis," said lead researcher Dr. Shiv Saidha, a neurologist at Johns Hopkins University.
These findings may not be associated with the condition of the eye, but rather with changes in the brain itself, he said.
"If confirmed, the implications of our study findings are that OCT [optical coherence tomography] -- a relatively inexpensive, non-invasive, well-tolerated, reproducible and easily repeatable investigation -- may be a complementary technique to MRI [magnetic resonance imaging], providing useful information regarding the global aspects of the multiple sclerosis disease process," Saidha said.
The imaging technique may help researchers evaluate the effectiveness of new treatments because their impact might be reflected in changes in the retina, Saidha added.


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Monday, October 1, 2012

Cognitive Reserve and Multiple Sclerosis

By , Guide
September 30, 2012

We all have heard the concept of "use it or lose it" applied to aging people and keeping their minds and bodies active and healthy. It turns out that maybe there is something to this idea around lessening the bad effects of MS-related cognitive dysfunction, goes a theory called "cognitive reserve."
The idea behind the theory of cognitive reserve is that people who have more "active" brains can sustain higher levels of brain damage before they begin to lose functionality.
In people with multiple sclerosis (MS), this means that people who are more intelligent, more highly educated and/or have more challenging work can have more evidence of disease progression (demyelination and atrophy) before demonstrating the same evidence of cognitive dysfunction as other people who are not inherently as smart or educated.
In a recent study conducted among people with MS, scientists reported; "Individuals with high cognitive reserve were more likely to report lower levels of perceived disability and perceived cognitive deficits, and higher levels of physical health, mental health, and well-being."
The primary mechanism that is proposed is that the more "active" brains are able to compensate for the damage by "recruiting" other parts of their brains (other brain networks) to get mental tasks completed.


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Have you heard about MS SoftServe?

MS SoftServe is a non-profit organization dedicated to individualized learning about MS. What's that you ask? You know how easy it is to get freaked out when you are trying to research anything about your health on the web? And when you are diagnosed, or trying to figure out specifics about your new MS symptom? I do. When I was diagnosed in 1988 I did. But now there is a way to avoid every single possibility; to learn about your MS, your way! Check out this video, subscribe to this blog to stay on top of everything MS SoftServe and be a part of the solution! (the site!)  

Other related links: - is the staging ground - is  my MS blog- 24 years and still finding a way to laugh
Renowned MS Physician, Dr. Aaron Miller endorses MSSS. 


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