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Wednesday, April 4, 2012

Learn of MSRELIEF.COM


Multiple Sclerosis Relief (MSrelief.com) is a blog dedicated to proving that joy can be found while living with multiple sclerosis.
It is a place where experiences are shared, that illustrate the power one has of finding joy in their reality.
Because Multiple Sclerosis is a disease that is not fully understood, many have found success treating symptoms in various ways. At MSRelief.com we partner with our visitors and experts in the fields of homeopathic remedies, nutrition, exercise therapy, pharmaceutical treatments, and counseling services in reaching our goal of helping others find joy.
As you browse our site you will find inspirational stories, testimonials and helpful resources to support you during your MS experience.
Have fun, find joy!


CLICK here : www.msrelief.com

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Basic Science Improving MS Care, a Clinical Context Report


By John Gever, Senior Editor, MedPage Today
Published: April 03, 2012
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, RN, BC-ADM, Nurse Planne

Transcript:
JOHN GEVER: I'm John Gever with MedPage Today, here to do a clinical context expert commentary on multiple sclerosis with Dr. Lawrence Steinman of Stanford University, a preeminent neuroimmunologist.
Dr. Steinman, there are a number of questions that, you know, really have been with us as long as we have known about MS. Some of them may have become more prominent recently. I think one of the most puzzling is the female predominance of the disease. I mean because we don't really know what the triggers of MS are, it seemed like it would be a window into the disease. And yet really it hasn't worked out that way too well so far. And of course the female predominance has increased over the last decades. So talk a little bit about that, if you would.
LAWRENCE STEINMAN, MD: Yes. Well, one of the most striking things about MS is that over the past 20 years the ratio of females to males has increased from about 2 to 1 to over 3 to 1. So I don't think that females have evolved that quickly. There must be something going on in the environment that has changed the situation.
Alternatively, one could argue that maybe we are reporting the disease better or that females are more vocal and are being ascertained in a more prevalent way. But this isn't happening, as best we can tell. The ratio really is increasing dramatically.
So we set out in the laboratory to attempt to begin to answer the question about what might be differences between males and females. And the work I am describing was done first at my lab at Stanford by a very brilliant postdoc, Dr. Shannon Dunn, who moved to the University of Toronto after finishing her postdoc with me.
So, what she found: first of all, beginning in mice, we have an animal model of multiple sclerosis in mice. It's a model that was first described about 80 years ago called, for want of a better term, EAE, experimental autoimmune encephalomyelitis. And in that model, females are much more susceptible [than] males.
So we were looking at various gene families that are under the control of androgens and estrogens. And one of the genes that was of most interest to us are a group of genes called the PPARs [peroxisome proliferator-activated receptors]. And they come in various varieties, and they are very sensitive to steroid hormones. So when we knocked out a particular member of the PPAR family -- PPAR-alpha -- it turned out that the susceptibility in males shot way up.
So what we learned from her studies in mice -- and they are very elaborate, and they were published in top journals -- was that PPAR, particularly PPAR-alpha and also PPAR-delta and -gamma, serve as brakes on the immune system.
So is it the case, at least in a mouse, that female mouse have, say, a smaller amount of the brake, if you will, than a male mouse? And the answer is yes. And it turns out that in the liver and on their T cells and in other places we look, that the males have much more of PPAR-alpha than females. If we castrate the males -- and that's a horrible experiment -- the PPAR level drops.
We also noticed that in a cage, the alpha male, the dominant male, has the highest level of PPAR. So it's exquisitely sensitive to testosterone. If we give testosterone to females, they'll grow a moustache in a mouse -- I'm saying that facetiously -- but they will also increase their level of PPARs.

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Tuesday, April 3, 2012

Synthetic Biologics — formerly Adeona Pharmaceuticals — set to start phase-two test of multiple sclerosis drug


Ann Arbor-based Synthetic Biologics Inc., formerly known as Adeona Pharmaceuticals Inc., announced today that it has completed enrollment of 164 patients for a phase-two U.S. Food and Drug Administrationtrial of a drug to treat multiple sclerosis.
Synthetic Biologics (NYSE Amex: SYN) has received more than $8 million in grants to help bring to market the drug, Trimesta, which is taken orally. The company said the money will be sufficient to fund the trial to its completion.
The randomized, double-blind trial will be at 15 sites in the U.S. If results are promising, Synthetic Biologics will conduct a larger phase-three trial — the last step before commercialization.
Trimesta targets a form of MS known as relapsing-remitting MS, which affects women.

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Adherence to First-Line Disease-Modifying Therapy for Multiple Sclerosis in Kuwait


Spring 2012Raed Alroughani, MD, FRCPC; Anil Thussu, MD, DM
The aim of this retrospective study was to determine the rate of nonadherence to disease-modifying therapies (DMTs) among multiple sclerosis (MS) patients in Kuwait and to identify reasons for patient discontinuation of long-term therapy. Using a newly established MS registry at our institution, we collected data on MS patients' demographics, clinical characteristics, disability measures, and continuation or discontinuation of first-line DMTs. Reasons for nonadherence were divided into four categories: adverse events, inconvenience, perceived lack of efficacy, and physician-documented disease progression. Of 212 eligible patients, 40.1% were found to be nonadherent to first-line DMTs. In the nonadherent group, the female-to-male ratio was 1.75:1 and the mean age at disease onset was 26.8 years. Of this group, 69.4% of patients had a relapsing-remitting course, 18.8% had a secondary progressive course, and 11.8% had clinically isolated syndrome. Compared with the adherent group, the nonadherent group had a shorter mean disease duration (P = .014) and a greater likelihood of having Expanded Disability Status Scale (EDSS) scores of 3 or lower (67.1% vs. 48.0%; P = .007). Inconvenience was the most common reason for nonadherence (32.9%), followed by perceived lack of efficacy (25.9%), adverse events (23.5%), and physician-documented disease progression (17.7%). In summary, the rate of nonadherence to first-line DMTs in MS patients at our institution is considered high. Most nonadherent patients had a short disease duration and low EDSS scores. Inconvenience and perceived lack of efficacy were the most common reasons for nonadherence. The results demonstrate a need to improve treatment adherence among MS patients in Kuwait through providing better patient education, improving communication between patients and health-care providers, defining therapy expectations, and instituting new therapeutic techniques.
From the Department of Medicine, Division of Neurology, Amiri Hospital, Kuwait City, Kuwait.

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Perceived Met and Unmet Health-Care Needs in a Community Population with Multiple Sclerosis


Scott B. Patten, MD, PhD; Jeanne V.A. Williams, MSc; Dina H. Lavorato, MSc; David Terriff,MSc, MD; Luanne M. Metz, MD, FRCPC; Sandy Berzins, MSc; Andrew G.M. Bulloch, PhD
Community-based studies are required to accurately describe the supportive services needed by people with multiple sclerosis (MS). Characteristics that influence (or result from) care-seeking may introduce bias into other types of studies. The Participation and Activity Limitation Survey (PALS) was a post-census survey conducted by Statistics Canada in association with a 2006 national census. The PALS collected data from a sample of 22,513 respondents having health-related impairments according to their census forms. The survey collected self-reported diagnostic data and obtained ratings for items assessing impairment as well as perceived met and unmet needs for care and support. It identified 245 individuals with MS, leading to an estimated (weighted) population prevalence of 0.2% (200 per 100,000). As expected, those with MS reported more-severe health problems than did those with other types of disability, particularly in the areas of mobility, dexterity, and cognition; they were also more likely to report having multiple caregivers. People with MS also reported more unmet health-care needs than did those with other forms of disability, particularly with respect to meal preparation, housework, shopping, and chores. Despite their more negative health status and greater reliance on caregivers, people with MS reported participation in society comparable to that of people without MS. Thus, people with MS report greater needs than do people with other forms of health-related disability and utilize supportive services more often. However, they also report higher levels of unmet needs. The substantial needs of people with MS are only partially addressed by existing services


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2012 report on MS caregivers reveals challenges and needs



If your loved one is diagnosed with multiple sclerosis, MS, your doctor won't be able to tell you exactly what to expect. What he might say is that it's an unpredictable disease, and it's time to get prepared.
Multiple sclerosis is a chronic and progressive disease that's characterized by unpredictability. MS is often diagnosed in young adulthood, and patients require care for a longer period of time than many other chronic diseases that present later in life. MS caregivers have a different profile than most other caregivers, and often spouses and partners fall into the caregiver role when they had anticipated a life of equal partnership.
For these reasons and more to be discussed, MS presents caregivers with a unique set of challenges and burdens.
A new report from the National Alliance for Caregivers finds that family caregivers for MS patients have greater physical, mental, and financial burdens than the general family caregiving population.
dailyRx spoke with Kimberly Koch, vice president of programs and services at the National MS Society about the challenges that MS caregivers face, and how best to deal with the unpredictable nature of the disease.

A Multiple Sclerosis Diagnosis

“Someone may be diagnosed with one type of MS, but how they respond and the symptoms they're experiencing is going to vary from person to person,” Koch told dailyRx. “What people need to do when their loved one is newly diagnosed is to really become educated about the disease.”
Multiple sclerosis attacks the central nervous system, and it affects each patient differently. Symptoms range from cognition problems, to mobility issues, to blindness, difficulty speaking, and more.
Scientists are still learning how multiple sclerosis progresses. What they do know is that it destroys myelin, the protective sheath that covers nerve cells in the brain.
When myelin is destroyed, signals that communicate through the brain are disrupted. That translates to the loss of functioning over time.
One of the things that caregivers need to be prepared for is periods of attacks and recessions, and the changes that they may bring to daily life, said Koch.
“It can be different from minute to minute, hour to hour. Someone may be having a symptom at this moment, and a few hours later, it's gone. Or the symptom may never leave,” she said. “You may be able to recover, and life continues on like nothing ever happened, or other people experience an exacerbation and they never completely come back from it.”
Koch advises that the best way to deal with this unpredictability is to arm oneself with trustworthy information, support, and resources.
Koch helps run the caregiver initiatives for the National MS Society, and she recommends getting in touch with the organization to gain access to resources. She also recommends the group Can Do Multiple Sclerosis, a partner of the National MS Society.

Life For Caregivers

Because MS is diagnosed often in early adulthood, the profile of a caregiver skews younger than the general population of caregivers. Spouses or partners may be the primary caregiver, or parents for adult children.
For MS caregivers, plans are never reliable. They may plan an outing or vacation, and have to cancel because their loved one isn't feeling up to it, or their symptoms prevent them from participating.
That's just one way that life changes for caregivers of MS.
MS has a long life cycle, which means that caregivers will be providing care for a longer period of time than other chronic diseases. The mean duration of MS is about 30 years, and it can reduce life span by 5 – 10 years.
The Multiple Sclerosis Caregivers 2012 report found that respondents had been providing care for 9 years, compared to 5 years for the general caregiving population.
The length of caregiving, along with the unpredictable nature of the disease, are contributing factors to the physical, mental, and financial challenges that caregivers face.
Forty-three percent of respondents said that the mental confusion their loved ones experienced negatively impacted their own mental health, and 47 percent reported negative impacts on their own financial situation.

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Monday, April 2, 2012

Acorda Therapeutics Launches New Interactive Website Spotlighting Treatment with Ampyra® (Dalfampridine) of Walking Problems in Patients with Multiple Sclerosis





New site – www.AmpyraJourneys.com – is first to focus exclusively on walking problems for people living with MS, with patient profiles, medical information, and opportunities for visitors to post messages of inspiration to help others.

HAWTHORNE, N.Y.--Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced the launch of a new interactive patient website called Ampyra Journeys (www.AmpyraJourneys.com). The site is the first-ever stand-alone patient site to focus on walking problems associated with multiple sclerosis (MS). Ampyra (dalfampridine) is an oral medication approved by the FDA as a treatment to improve walking in patients with multiple sclerosis. This was demonstrated by an increase in walking speed.

The Ampyra Journeys website features true stories of people living with MS who have experienced walking problems and who took action to get treatment. Their stories explore the impact that walking problems can have for people living with MS, and how treatment that leads to improvements in walking can help people to regain the ability to perform many daily tasks. Prominent MS patient advocate, motivational speaker and entertainer Kristie Salerno Kent is among the patients who share their personal stories on www.AmpyraJourneys.com.

“I have met so many people living with MS who did not seek help when they started to experience walking problems. The important news is that treatment is available, and so I am very excited to be involved with Ampyra Journeys. This new website is a vital resource that can help anyone living with MS to learn about, and to do something about, MS-related walking problems,” said Ms. Salerno Kent.
Walking problems are a significant concern for people living with MS. According to a 2011 Harris Interactive Survey, approximately 70% of people with MS who experience difficulty walking identify this issue as the biggest challenge associated with MS.

Visitors to www.AmpyraJourneys.com can also download “Let’s Talk About Walking and MS,” a guide with tips on how to talk about walking problems with a healthcare provider.

“Acorda Therapeutics developed Ampyra to help patients with walking problems, one of the most challenging and common symptoms of MS. Now we are very pleased to present Ampyra Journeys, to help more people get the support they need to get treatment. It's our hope that this site will educate and inspire people to seek help for their MS-related walking problems,” said Ron Cohen, MD, president and CEO of Acorda Therapeutics. 

more found here: www.AmpyraJourneys.com

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MS and Quality of Life, a Clinical Context Report


Information provided to us from: Cherie C. Binns RN BS MSCN
Dr. Jack Burks, Medical Director of the Multiple Sclerosis Association of America discusses quality of life issues with MS...primarily bladder, bowel and sexual dysfunction....and how to bring them up with your doc and treat them.   The article is long, but a good read.




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