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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, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.


Friday, October 2, 2009

Powerless Wheelchairs? Can you imagine Health Care going Backwards?

Review the link shown below to see what one US Senator believes:

Costly Cuts: Will proposed healthcare overhaul or eliminate necessary equipment like wheelchairs or scooters for Americans?

This message is Not Political. It is just informing you of what is being considered.

The above information was provided to me by Ray S., in Delray Beach, Fl.


Thursday, October 1, 2009

MS Related Fatigue

In this week's eMS News, we continue with our series, MS Therapies in the Pipeline.
Written by: Dr. Timothy Vollmer, medical director of the Rocky Mountain MS Center.

Fatigue—low-energy, difficulty with thinking, and an overwhelming need to sleep—is one of the most common symptoms of MS, and the hardship of finding a means of alleviating it can be equally frustrating. For many people, medication coupled with lifestyle modifications—such as good nutrition and exercise—are most effective.

In the last 20 years, a number of medications have been tested and consequently used to help combat MS-related fatigue, including amantadine, modafinil, adderall and Ritalin. The use of these medications as treatments for fatigue is off-label, meaning that although the four drugs are FDA approved, they were approved to treat other illnesses or conditions.

Amantadine (Symmetrel) is an antiviral medication often used to treat influenza; it is also commonly used as a therapy for Parkinson’s disease. The mechanism behind its capacity to help alleviate MS-related fatigue remains unknown and many MS investigators and physicians have deemed the medication—at best—moderately effective. Study results to date have not documented consistent improvements in fatigue, and many investigators see a critical need for larger and more in-depth studies on amantadine. Low doses (100 or 200 mg/day) have been accompanied by few side effects. Higher doses (300+), however, can cause a blotchy, discoloration of the skin called livedo reticularis. (Cont.

Source for this article is the Rocky Mountain MS Center. Click the link found above to read this full article.


A single-centre, randomized, double-blind, placebo-controlled study of interferon beta-1b on primary progressive and transitional multiple sclerosis

Information shared by Karen D. in South Florida. Thanks Karen.

Inflammation and neurodegeneration may have differential impacts on disease evolution in the different forms of multiple sclerosis. However, a beneficial effect of immunomodulatory drugs should not be ruled out in primary progressive multiple sclerosis. Our aim is to investigate the safety and efficacy of interferon beta-1b in primary progressive multiple sclerosis. We conducted a double-blind, stratified, randomized, parallel group, phase II pilot study where patients with primary progressive multiple sclerosis or ‘transitional’ forms of multiple sclerosis received interferon beta-1b at doses of 8 MIU or placebo for 24 months.

The main objective of the study was to investigate the safety and tolerability of interferon beta-1b. The primary efficacy variable was the time to neurological deterioration (Expanded Disability Status Scale) confirmed at 3 months. Seventy-three patients were included and three dropped out the study. More patients in the treatment arm had at least one related adverse event (94.4% versus 45.9%; p <> differences in safety endpoints were observed. Time to neurological deterioration was not different between trial arms (log-rank test, p = 0.3135).

Statistically significant differences favoring treatment were observed for the Multiple Sclerosis Functional Composite score at several timepoints, T1 and T2 lesion volume changes at 12 and 24 months, mean number of active lesions and proportion of patients with active lesions at 24 months. We conclude that interferon beta-1b is safe and well tolerated in patients with primary progressive multiple sclerosis and transitional multiple sclerosis. Positive effects of interferon beta on secondary clinical and magnetic resonance imaging outcomes were observed, but a beneficial effect on Expanded Disability Status Scale progression was not demonstrated.

First published on September 29, 2009
Multiple Sclerosis 2009, doi:10.1177/1352458509106937

X Montalban*, J Sastre-Garriga, M Tintoré, L Brieva, F X Aymerich, J Río, J Porcel, C Borràs, C Nos,and A Rovira

Unitat de Neuroimmunologia Clínica, Multiple Sclerosis Centre of Catalonia

* To whom correspondence should be addressed. E-mail: xavier.montalban@unic-em.com.

Source: Sage Journal


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New software to detect multiple sclerosis before brain damage occurs

October 2009

Researchers of the Unit for Systems Biology of the University of Jaén, led by Francisco J. Esteban, are developing a software for clinical use to detect multiple sclerosis even before the typical brain damage of this neurodegenerative disease appear. In order to do so, this scientific multidisciplinary team is calculating the fractal dimension of the brain images registered on magnetic resonance imaging. They are starting to implement this technique also to other neurodegenerative diseases, and therefore it could be a tool for the early diagnose of this type of diseases. Centre for Applied Medical Research of the University of Navarra and Hospital Clínico of Barcelona are collaborating in this research.


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How the MSRC- Services can Help You...

MSRC can help in a number of ways.

Firstly we are able to talk to you personally if you contact us on 0800 783 0518. (Unfortunately this 0800 number will not work from abroad and you will need to use our office number and the appropriate code from your country e.g. 011441206505444 from USA and 00441206505444 from Europe)

Alternatively you can use our office number which is 01206 505444 or you can contact us from the website, or, email us at info@msrc.co.uk. We are usually available Monday to Friday from 9.00am to 5.00pm and have an answer machine outside of those hours which we always respond to as soon as we can

We are pleased to announce that the 24 Hour Telephone Counselling Service is available and can be reached by dialling the freephone number 0800 783 0518 and choosing option 1 (within the UK only. Access from abroad is as explained above.)

In some circumstances the support might just take the form of being someone to talk to and share concerns or fears. It might be the provision of information at the time or by providing leaflets or books that could help. We will also refer you to other organisations if they are better suited to provide the support needed at the time.

We are also willing to come out and give talks (UK only unless someone is willing to pay the air fare to somewhere nice) on any subject connected with MS that a group requests. This is sometimes used by professional groups so that they can gain a real insight into the matters affecting their clients which they should be aware of.

If the need is a question of financial support for a group (Sorry but we cannot help individuals under our current rules) then contact us with your request and we will always look at ways of helping. You will be guaranteed a positive attitude from us even if in the end we have to say no - in other words our instinct is to help and if we can possibly find a way we will.

The only way to really find out how we can help is to get in touch about your particular situation and give us a try. We hope you will.

MSRC Services

  • Support
  • 24 Hour MS Telephone Counselling
  • Choices Information Leaflets
  • The New Pathways Magazine
  • In Memoriam
  • The MSRC Insurance Services
  • ============================================

    A major unmet need in the treatment of Multiple Sclerosis is a medication to increase walking ability.

    A major unmet need in the treatment of Multiple Sclerosis is a medication to increase walking ability. Since disease modifying therapies have only been available for 16 years, MS starts at a mean age of 29, and the disease has only a minimal effect at shortening lifespan, the majority of MS patients presently have progressive forms of MS. Ten percent have primary progressive disease, progressive from the onset, and others, start with relapsing remitting MS, and progress after approximately 15 years to progressive illness. In the early years of progressive MS, patients loose the ability to walk, hence the prior motto of the National MS Society, "MS, the great crippler of young adults."

    FAMPRIDINE-SR IS THE FIRST MEDICATION FOUND TO IMPROVE MS PATIENTS ABILITY TO WALK. Standard disease modifying agents, the interferons (Avonex, Betaseron, Rebif), Copaxone and Tysabri, decrease relapse rate and may slow progression, however do not improve one's ability to walk.


    Aimee Mullins and her 12 pairs of legs - an Inspirational message

    This inspirational thought was provided by Ellen G., in Florida - Thank You Ellen.

    Athlete, actor and activist Aimee Mullins talks about her prosthetic legs -- she's got a dozen amazing pairs -- and the superpowers they grant her: speed, beauty, an extra 6 inches of height ... Quite simply, she redefines what the body can be.

    to watch this amazing video.

    (Listen for the funny punch line about Pamela Anderson)

    The closing moments of her talk, says it all...

    THIS IS Quite Inspirational !!
    Watch it, learn from it and share it with others..

    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

    Wednesday, September 30, 2009

    Positive Results Announced from Phase 3 Trial of Fingolimod Pills in Relapsing MS

    Sept 30, 2009

    Novartis International AG announced today that oral FTY720 (fingolimod) was able to significantly reduce relapse rates and slow disability progression over two years in a large-scale, phase 3 trial involving 1,272 people with relapsing-remitting MS. According to a company press release, safety data confirmed a positive benefit-risk profile for the lower of two doses tested, and the company plans to submit applications to drug regulatory agencies for marketing approval of the potential therapy at the end of 2009.

    Background: FTY720 binds to a docking site (sphingosine-1-phosphate receptor, or S1P receptor) on immune cells, including T cells and B cells, that have been implicated in causing nervous system damage in MS. The drug appears to induce immune cells to remain in lymph nodes, where they can do little harm, preventing them from migrating into the brain and spinal cord.

    Positive results from an earlier phase 2 study led to several large-scale phase 3 trials. Initial positive results from the TRANSFORMS study, comparing two different doses of fingolimod with Avonex® (interferon beta-1a, Biogen Idec) over only one year were presented at the American Academy of Neurology meeting in spring 2009. Adverse side effects seen more often in the fingolimod treatment groups in this trial included temporary reductions in heart rate at the start of therapy, small increases in blood pressure, and a few cases of macular edema (swelling of the back of the eye). Two deaths from herpes infections occurred in the group taking the higher dose of fingolimod, and seven cases of localized skin cancer occurred in the fingolimod groups.

    Continue reading by clicking here

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    EMD Serono Submits Application for Cladribine Tablets as a Potential Oral Short-Course Multiple Sclerosis Therapy in the United States

    • Press Release
    • Source: EMD Serono, Inc. - On Wednesday September 30, 2009

    ROCKLAND, Mass., Sept. 30 /PRNewswire/ -- EMD Serono, Inc. an affiliate of Merck KGaA, Darmstadt, Germany, announced today the submission of a New Drug Application (NDA) to the US Food and Drug Administration (FDA) for Cladribine Tablets, EMD Serono's proprietary investigational oral formulation of cladribine, as a therapy for reducing relapses in people with relapsing forms of multiple sclerosis (MS). Cladribine Tablets has the potential to be the first orally administered disease-modifying therapy available for people living with relapsing MS, as all disease-modifying therapies currently approved for the treatment of MS are parenteral therapies.

    "As a leader in the area of neurodegenerative diseases, we continue to focus on making a positive difference in the lives of people living with MS, and their families," said Fereydoun Firouz, President and CEO of EMD Serono, Inc. "If approved, short-course therapy with Cladribine Tablets could transform the way people approach their treatment options, and meet an unmet need as an oral, disease modifying drug available for MS. We look forward to working with the FDA during the course of the regulatory process."

    Continue reading this article on oral cladribine by clicking here

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    Patient-Targeted Messaging for Emerging Multiple Sclerosis Agents Needs to Highlight Efficacy and Preservation of Quality of Life


    WALTHAM, Mass., Sept. 30 /PRNewswire/ -- Decision Resources, one of the world's leading research and advisory firms focusing on pharmaceutical and healthcare issues, finds that patient-targeted messaging for emerging multiple sclerosis oral agents will need to provide high-level information regarding the efficacy and preservation of quality of life and forego catchy and/or short taglines highlighting oral dosing. The knowledgeable multiple sclerosis patient population is likely to already be informed about oral dosing and will want information regarding efficacy and safety so that they can readily compare these new agents to the efficacy and safety of currently available agents.

    Continue reading this article on emerging MS Oral Therapies, by clicking here.

    For those reading this article on Facebook, please check with our blog - to leave comments or to see what others write in comments to our blog posted articles.

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    Novartis MS Pill Works, May Launch As Soon As '10

    Sept 30, 2009

    (RTTNews) - Novartis AG (NVS) said Wednesday that initial results from a late-stage study showed that treatment with oral FTY720 significantly reduced relapses and disability progression in patients with multiple sclerosis compared to placebo. The company noted that comprehensive analyses of the data are ongoing, and detailed results are planned to be presented at a leading scientific congress in 2010.

    Read more by clicking here

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    Tuesday, September 29, 2009

    MS Trial Alert: Study of Oral Teriflunomide (HMR1726) Recruiting People at High Risk for MS Worldwide

    September 29, 2009

    Summary: Investigators worldwide are recruiting people at high risk for multiple sclerosis (MS) for a study comparing two doses of oral HMR1726 (teriflunomide), an immune system-modulating agent, and inactive placebo. People at high risk for MS are those who experience a clinically isolated syndrome (CIS, a single neurological event suggestive of demyelination, such as focal weakness, numbness, coordination problems, or decrease in vision in one eye) and brain magnetic resonance imaging findings suggestive of MS. The study is sponsored by Sanofi-Aventis.

    Rationale: Multiple sclerosis occurs when the immune system attacks the brain and spinal cord. Teriflunomide is an agent that may decrease immune system activity in MS. Other studies of teriflunomide in MS are ongoing.

    Eligibility and Details: People eligible for participation include individuals 18-55 years of age who experience a clinically isolated syndrome (a single neurological event suggestive of demyelination, such as focal weakness, numbness, coordination problems, or decrease in vision in one eye) and magnetic resonance imaging findings suggestive of MS.

    Participants will be randomly assigned to receive 7 mg teriflunomide, 14 mg or placebo once daily for 108 weeks (about 2 years). The main outcome measure of the study is to determine whether the study drug reduces the time to conversion to clinically definite MS significantly more than placebo. Other measures will be followed including functioning of patients and changes in brain MRI scanning.

    Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please visit http://www.thetopicstudy.com/.

    source: National MS Society

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    Stem Cell and Gene Therapeutic Strategies for the Treatment of Multiple Sclerosis

    Multiple Sclerosis Research Group, Monash Immunology and Stem Cell Laboratories, Monash University, Clayton, Victoria, 3800, Australia. christopher.siatskas@med.monash.edu.au.

    Multiple sclerosis is a disease of the central nervous system that predmoninantly affects young adults. The pathogenic mechanisms are complex, however numerous studies indicate that the disease is initiated by an autoimmune attack on protein targets present in the central nervous system.

    Given that a dysfunctional immune system perpetuates the pathophysiological mechanisms that characterize this inflammatory disorder, several therapeutic approaches that target immune cells or their secreted mediators have been generated and are currently used clinically.

    Although these strategies have been partially beneficial to a proportion of patients, current therapies are not particularly effective at preventing disease progression. As such there is a large and unmet need for the development of more effective treatments.

    Owing to a number of promising results obtained in mouse models of multiple sclerosis, cell therapies implementing hematopoietic, mesenchymal and neural stem cells may provide practical vehicles for in situ immunomodulation, neuroprotection and regeneration.

    In concert with these approaches, gene therapy strategies are being investigated to restore antigen-specific tolerance or to deliver anti-inflammatory molecules. Furthermore targeted delivery of glial or neurotropic factors, which counteract the activity of inhibitory molecules within the neurodegenerative component of the lesion, is also being pursued. It is conceivable that these experimental approaches alone, or in combination with emerging and current treatments, may establish a rational protocol for the treatment of multiple sclerosis and potentially other autoimmune disorders.

    PMID: 19747118 [PubMed - as supplied by publisher]

    For related articles, click here

    Analyses of cerebrospinal fluid in the diagnosis and monitoring of multiple sclerosis

    Department of Neurology, University of Texas Southwestern Medical Center at Dallas, TX, USA.

    The laboratory evaluation of cerebrospinal fluid (CSF) has been routinely employed as a diagnostic test in the diagnosis of neuroimmunological disorders such as multiple sclerosis (MS). Recently, CSF analyses in MS have garnered renewed interest as a tool for monitoring disease activity and prognosis. With the identification of patients that are very early in their disease course, namely patients with a radiologically isolated (RIS) or a clinically isolated syndrome (CIS), the true value of these evaluations has yet to be fully explored. Ultimately, the hope is that biomarkers within this compartment will be identified that will identify etiologic factors of MS and other inflammatory disorders of the central nervous system. In this review we discuss the history of CSF diagnostic tests and the most recent methodological advances. We also outline the potentially important diagnostic role and possible limitations of these tests.

    PMID: 19782408 [PubMed - as supplied by publisher]


    P2Y12 Receptor Protein in Cortical Gray Matter Lesions in Multiple Sclerosis

    Santa Lucia Foundation, 00143 Rome, Italy.

    Although Multiple Sclerosis (MS) is regarded as a white matter disease, the incidence of demyelination and axonal injury is prominent also in gray matter. In MS, extracellular adenosine triphosphate (ATP) is an important mediator of central nervous system pathology via its ability to cause oligodendrocyte excitotoxicity. We have analyzed the distribution pattern of all ionotropic P2X and metabotropic P2Y receptors for ATP in postmortem samples of the cerebral cortex from healthy human subjects as well as MS patients. We focus particularly on the P2Y(12) subtype that is highly enriched in oligodendrocytes. We correlate the expression of this receptor to the extent of gray matter demyelination and pathological alterations occurring during secondary progressive MS.

    Using triple immunofluorescence and confocal analysis, we show that in sections of cerebral cortex from postmortem MS brains, the P2Y(12) protein is present in myelin and interlaminar astrocytes but absent from protoplasmic astrocytes residing in the deeper cortical layers, from microglia/macrophages, and from intact demyelinated axons. We report that a decreased P2Y(12) receptor immunoreactivity in proximity to the lesions is directly correlated with the extent of demyelination found in all types of gray matter cortical plaques (I-III) and subcortical white matter. Our study provides further insights into the pathogenetic features of MS and suggests that the loss of purinergic P2Y(12) receptors might be detrimental to tissue integrity.

    PMID: 19783848 [PubMed - as supplied by publisher]

    Source : pubmed

    Free Educational Symposium Looks to the Future of MS

    A free educational symposium, “MS 2009: Vision for the Next Decade” will be offered from 8 a.m. to 1 p.m. Nov. 15th at the Hilton New York in New York City.

    The symposium is being presented by the International Multiple Sclerosis Management Practice and Multiple Sclerosis Research Center of New York (MSRCNY). Topics include current and future treatment for the newly diagnosed and for progressive MS, coping with MS, naturopathic medicine, physical therapy for MS, and research at MSRCNY. Also included is a review of patient profiles with a question and answer session.
    This symposium is open to anyone interested in learning more about MS research and treatments.
    To register go to www.imsmp.org/register.asp or call: (646) 557-3919.
    For questions: symposium2009@imsmp.org. Seating is limited.

    source: MSFYi e-newsletter from the MS Foundation

    Using Acetaminophen with Caution

    Source: MS Foundation Newsletter (MSFYi)

    September was National Pain Awareness Month, a time to focus both on pain and pain-relief. One of the most popular over-the-counter pain relievers, acetaminophen, has drawn the FDA’s attention recently due to the problem of liver injury related to the use of acetaminophen in both over-the-counter and prescription products. When used as directed on the label, acetaminophen is generally considered safe, but liver damage can occur if more than the recommended dose is taken.

    As an ingredient in prescription medications, it may be abbreviated as “APAP.” And in other countries, acetaminophen can have a different name. In Great Britain, for example, it is called paracetamol.

    To lower your risk of damage, the FDA recommends you do the following: Follow the dosing directions and never take more than directed because even a small amount more than directed can cause liver damage. Don’t take it for more days than directed. Don’t take more than one medicine that contains acetaminophen at a time.

    Talk to you doctor before taking acetaminophen if you drink three or more drinks of alcohol every day, or have liver disease. Also, if you take the blood thinner warfarin you should talk with your doctor first, because taking warfarin and acetaminophen together may raise your risk of bleeding.


    Genetic Clues May Help Predict MS Outcomes

    Source: MSFYi newsletter

    Among the unknown factors about MS is why the disease differs in severity, symptoms and progression from person to person. Results of a recent study conducted by the Mayo Clinic indicate that at least some predictions of disease course may lie in a small number of strong genetic determinants.

    Researchers discovered that two genes in mice were associated with good central nervous system repair, giving them hope for developing more effective therapies for people with MS and for anticipating how the body will respond to the disease.

    The study used two different strains of mice with a chronic, progressive, MS-like disease. One strain progressed to paralysis and death. The other underwent the initial damage phase of the disease and then spontaneously repaired the damage to the central nervous system, retaining most neurological function. Using genetic mapping techniques for mice, researchers mapped two strong genetic determinants of good disease outcome.

    “It’s possible that the identification of these genes may provide the first important clues as to why some patients with MS do well, while others do not,” says Allan Bieber, Ph.D, the Mayo Clinic neuroscientist who authored the study. “The genetic data indicates that good central nervous system repair results from stimulations of one genetic pathway and inhibition of another genetic pathway. While we’re still in the early stages of research, it could eventually lead to the development of useful therapies that stimulate or inhibit these genetic pathways in patients with MS.”


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    Why I'm thankful for multiple sclerosis

    Written by: Lorrie Jorgensen

    From Monday's Globe and Mail - Monday, Sep. 28, 2009

    I wish someone would hurt me. Not kill-me kind of hurt, but enough to damage me visibly. They could run me down with their car or batter my legs with a baseball bat. That would work.

    I don't normally think this way but on my tired days when I'm really wiped I tend to get dramatic and over the top with self-pity. I have multiple sclerosis and one of my biggest challenges is battling continuously to overcome the debilitating fatigue that accompanies the disease. Like a junkie, I have worked my way through the available medications, but nothing has worked for long.

    The medical community does not know what causes MS but there are theories. There is an increased prevalence of the disease in northern European countries, leading to discussions about environment, lack of sunshine and vitamin D. There is also talk about predispositions, viruses and genetics. Being female almost tripled my odds of getting the disease. There is no cure.

    Click here to continue to read Lorrie's Story


    Writer (with MS) to donate half of her net proceeds to the MS Society of Canada for MS research

    About the Writer, Barbara Dickson:
    Diagnosed with multiple sclerosis in 1992, Barbara refused to succumb to illness without a fearless fight. Forced to retire from her career as an IT software analyst, she quickly re-discovered her love of writing.

    Now a multi-published inspirational author and public speaker, Barbara strives to instill hope in her audiences, especially when life has other plans. Barbara’s determined to touch the world, one heart at a time.

    Half of all net proceeds from the sale of Mountains for Maddi will be donated to MS research, and is supported by the MS Society of Canada.

    Readers can reach Barbara via her website at: www.barbaradickson.ca

    or by e-mail at: contact@barbaradickson.ca


    About: Mountains for Maddi:

    Maddi Madigan, while on vacation, careens into Dr. Gregory Connor on a snowy ski slope. Entangled with Greg and buried in snow, her heart skitters, almost as far as her ski poles.

    She soaks up the magnificent Rocky Mountain atmosphere over the next few days while avoiding an entanglement of another kind—romance. She bears the scars from a broken engagement, and is convinced men and a diagnosis of multiple sclerosis don’t mix; at least that’s what her head tells her.

    Too bad her heart has other plans. Greg, utterly smitten, pursues Maddi the same way he works—hard. When she lingers just beyond his romantic grasp, he rallies with dogged determination.

    Can Maddi make it through the week without her heart ending up in a puddle of slush at Greg’s feet? How hard should she try?

    Could Greg truly offer hope for a Happily Ever After?


    Learn how to get your copy of this romantic novel by clicking the link found above to reach Barbara


    Sunday, September 27, 2009

    "Episodes" The story of an MSer

    I have known Charles for a few years and thought you may want to know of his book called:

    Episodes: The story of an MSer and of MSB's Podcast

    by Charles-A. Rovira

    To get your copy, click here