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Saturday, May 9, 2015

MSFriends is just a telephone call away, and they exist, to provide peer support



MS knows no timetable – this is why we offer support when you want and need it.

The MSFriends program connects you with volunteers living with MS. The common bond of living with MS creates a unique connection. MSFriends volunteers complete a rigorous screening and training program and are focused on the needs of those who call for support.

What are the benefits of an MSFriends peer relationship?
  • Having someone who knows first-hand what it is like to live with MS to talk with and share your story. MSFriends is there to help you deal with the changes brought about by MS.
  • Having a sounding board for good decision-making and problem solving.
  • MSFriends is just a telephone call away ― ready to help you.
  • MSFriends has a call-back service for family members of those living with MS. Leave a message with the volunteer who answers and a trained volunteer who also has a family member with MS will call you back to provide support.

Connect today by calling the MSFriends helpline at 1-866-673-7436. 
All of your conversations are confidential.


Stu's Views and MS News/ MS Views and News is not associated with MS Friends except to help guide you with resources and information

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Progressive MS: Looking for answers NOW

Impressive reading for thousands seeking answers

By Douglas Landsman  

People who live with progressive MS have many questions, but one I hear often is, “When will there be treatment options for me?” Based on what I saw and heard at last week’s AAN, I’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive MS.

Several groups presented results or updates from large, ongoing studies involving people living with primary-progressive MS: one, a study of oral laquinimod, an experimental immunomodulator,  in 375 people with primary-progressive MS which recently began recruitment ; second, a clinical trial of oral ibudilast, an anti-inflammatory enzyme used in Japan, recruiting 250 people with primary- or secondary-progressive MS; and third, a study of ocrelizumab – an antibody cousin of rituximab delivered by infusion – in 740 people with primary-progressive MS that has completed enrollment. No results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way. I hope the findings provide us with new treatment approaches for people with progressive MS. (Abstracts # P7.210, P7.017)

One aspect of research into treatments for progressive MS may not seem very intuitive: Sometimes scientists need to test treatments in people with very early signs of the disease, such as optic neuritis, an inflammation of the optic (eye) nerve that is often the first symptom of MS, much before progression is even evident. They do this because the nerve damage – and if successful, the repair or protection from damage – is more easily observed in this single location.
hat brings us to exciting results from a trial led by Dr. Raju Kapoor (University College London), which recruited 86 people with optic neuritis. They were randomly assigned to receive either phenytoin – an FDA approved oral therapy used to treat epilepsy – or a placebo for 3 months to assess whether the phenytoin could help to protect the retinal nerve fiber layer at the back of the eye from damage. Of those completing the study, on average people who received phenytoin had 30% less damage to the nerve fiber layer compared to those who received placebo. The results raise the possibility of “repurposing” a therapy already on the market with a long track record of use. We need to confirm these results in a larger study to really understand if phenytoin can truly protect the nervous system from damage that leads to MS progression. (Abstract # PL2.005)
In another study, 154 people with primary- or secondary-progressive MS were given experimental MD1003 (concentrated biotin, a B vitamin), or an inactive placebo, for 48 weeks. The results showed that 12.6% of those given MD1003 showed improvement in disability, using the EDSS scale that measures disability progression or improvement in a timed walk, versus none of those on placebo, and there were no serious safety issues reported. More research is needed to figure out who might benefit from this approach and why only 12% responded. The manufacturer, MedDay Pharma, says that another trial is underway in people with MS and results are expected later this year. (Abstract #PL2.002)
Finally, I was impressed with a study from Dr. Mika Komori and a team at the National Institutes of Health that looked “behind the scenes” to try and better understand why immune-modulating treatments have not succeeded in progressive forms of MS as they have in relapsing MS. The team examined spinal fluid samples from 386 people with all types of MS as well as people without MS, to determine the exact numbers and characteristics of various immune cells. What they observed is that attacking immune cells in people with progressive MS were more likely to be holed up in the brain and spinal cord, whereas the cells in people with relapsing forms were mobile and circulating. What does this mean?  It may be that, for treatments to succeed at modulating inflammation and/or nerve damage in progressive MS, the therapies will have to be able to track the bad cells within the central nervous system. (Abstract #S12.001)
Everyone with MS lives with the uncertainty of whether it will progress and whether they will lose the ability to do the things that matter most to them. I’m encouraged by the research I saw last week and strongly believe this kind of research will drive us to find ways to stop progression and restore or repair lost function. 

Anyone can get a preview of the summaries, or abstracts, of presentations to be given at the Academy’s Annual Meeting at this link. Registration is necessary, but is free.

Douglas Landsman, PhD

Dr. Douglas Landsman is Associate Vice President, Biomedical Research at the National MS Society. He leads the biomedical research and fellowship/faculty award programs, and plays a key role in the International Progressive MS Alliance. He has a long-standing interest in nerve-muscle interaction and developing strategies for promoting nervous system repair after disease or injury.

The above article can be found by clicking this link

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Friday, May 8, 2015

Care Partners and Multiple Sclerosis: Differential Impact on Men and Women

Care Partners and Multiple Sclerosis: Differential Impact on Men and Women

Tamara McKenziePsyDMary Elizabeth QuigPhDTuula TyryPhDRuth AnnMarrieMD, PhDGary CutterPhDEdward ShearinPhDKamau JohnsonPhD;James SimsarianMD
From the American School of Professional Psychology, Argosy University, Washington, DC, USA (TM, ES, KJ); Neuropsychology Associates of Fairfax, Fairfax, VA, USA (MEQ); Department of Neurology, Georgetown University Medical Center, Washington, DC, USA (MEQ); Dignity Health, St. Joseph’s Hospital and Medical Center, Phoenix, AZ, USA (TT); Departments of Medicine and Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada (RAM); Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA (GC); and Neurology Center of Fairfax, Fairfax, VA, USA (JS).
Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We aimed to investigate the impact of caregiver stress on the emotional well-being and physical health of the MS care partner utilizing the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry.
Materials and Methods: Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment.
Results: Of 1446 care partners who agreed to participate, 1333 had complete data. Most were male (825, 61.9%) and on average (SD) 51.1 (11.2) years old. The average (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. As compared to male care partners, female care partners reported higher levels of burden and stress, and more medication use for stress/anxiety, and mood disorders. Male care partners were more likely to report physical complaints. Care partners of people with primary progressive MS reported greater perceived burden than did partners for secondary progressive MS and relapsing-remitting MS. Over 40% of care partners (559/1288) had missed work over the past year due to caregiving responsibilities.
Conclusions: Care partners of people with MS have substantial physical and psychological health concerns, and experience an adverse impact on employment. Future research should evaluate how to mitigate the adverse impacts of caregiving and evaluate positive aspects of the role.
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Fatigue, Sleep Quality, and Disability in Relation to Quality of Life in Multiple Sclerosis

Fatemeh Moghaddam TabriziPhDMoloud RadfarPhD
From the Nursing and Midwifery Department, Reproductive Health Research Center, Urmia University of Medical Sciences, Urmia, Iran.
Background: Quality of life (QOL) is impaired in multiple sclerosis (MS) in part due to physical disability. MS-associated fatigue (MSF) and poor sleep are common and treatable features of MS, which affect QOL.
Objective: The objective of this study was to assess the association between fatigue, sleep quality, and quality of life in people with MS.
Materials and Methods: Cross-sectional data were collected from 217 MS patients, who were referred to the outpatient MS center of Urmia, Iran, in 2013. Health-related quality of life (MS Quality of Life-54), fatigue (Fatigue Severity Scale, FSS), and sleep quality (Pittsburgh Sleep Quality Inventory, PSQI) were assessed. Expanded Disability Status Scale (EDSS) scores were also provided by a qualified neurologist.
Results: We included 217 patients in the analysis. The mean ± SD age of patients was 32.6 ± 9.6 years, and 79% were female. One hundred fifty-two (70.1%) of the patients were classified as poor sleepers based on PSQI scores. One hundred twenty-two (56.4%) presented with significant fatigue based on FSS results. The mean physical (PCS) and mental (MCS) health composite scores of the MSQOL-54 were 40.12 (SE 1.27) and 43.81 (SE 1.61), respectively. There was a strong statistically significant positive correlation between PCS scores and MCS (r = 0.58, P < .001), FSS (r = 0.49, P < .001), and PSQI (r = 0.52, P < .001) scores. MCS scores were strongly correlated with FSS (r = 0.53, P < .001) and PQSI (r = 0.35, P < .001) scores. Age exhibited significant negative correlations with PCS (r = −0.21, P < .05) and MCS (r = −0.58, P < .001) scores, and was significantly correlated with FSS (r = 0.23, P < .05) and PSQI (r = 0.21, P < .05) scores. EDSS scores were strongly correlated with FSS scores.
Conclusions: We observed strong correlations between QOL, fatigue, and sleep quality in a large community-based sample of individuals with MS. These findings support routinely screening and monitoring fatigue severity and sleep quality and their effects on QOL.
Credits and full article information, found here

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Changing the Course of Your MS: The Disease-Modifying Drugs

If you have active relapsing-remitting MS, your doctor will first treat you with one of the disease-modifying drugs. They're called disease-modifying drugs because they can actually slow down the progression of MS and prevent relapses to keep you active. These drugs work by suppressing the immune system so that it doesn't attack the protective coating (myelin) surrounding the nerves.
Disease-modifying drugs that reduce the number of exacerbations include:
Disease-modifying drugs that have been shown to reduce exacerbations and slow the progression of MS include:
The interferon drugs and Copaxone are considered to be very safe. Most of the side effects that do occur stem from the injection itself, including redness, warmth, itching, or dimpling of the skin over the injection site. With the interferon drugs, it's common to have flu-like symptoms -- aches, fatigue, fever, and chills -- but these should fade within a few months. The interferon drugs can also slightly increase your risk for real infections by lowering the number of white blood cells that help your immune system fight off illnesse
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Playing on a Wii Fit could help MS sufferers, North-East university researchers reveal

BALANCE: The first study of its kind has shown that ‘exergamers’ who played the of the Nintendo Wii Fit console were more engaged and more likely to use it regularly over a prolonged period of time than doing a normal workout.
BALANCE: The first study of its kind has shown that ‘exergamers’ who played the of the Nintendo Wii Fit console were more engaged and more likely to use it regularly over a prolonged period of time than doing a normal workout.

VIDEO games aimed at improving fitness could be just as effective as traditional physiotherapy exercises to help people with Multiple Sclerosis, researchers at a North-East university have discovered.
The first study of its kind has shown that ‘exergamers’ who played the Nintendo Wii Fit console were more engaged and more likely to use it regularly over a prolonged period of time than doing a normal workout.
A team of researchers from Teesside University’s School of Health & Social Care carried out a study with over 50 people clinically diagnosed with Multiple Sclerosis (MS) to examine the effects on their balance, one of the most debilitating effects of the condition.
Those using the Wii Fit, which uses a balance board to simulate exercise in front of a screen, saw an equal improvement in their stability to those using traditional physiotherapy exercise and a significantly greater improvement to those who received no intervention.
Jonathan Robinson, a senior lecturer in research methods at Teesside University, who led the study, said: “People with MS are encouraged to be as active as possible for as long as they can.
“But, one of the biggest problems for physiotherapists in general is getting people to continue with their exercise and, as MS is often self-managed, a lot of people report getting bored and giving up.
“Our research has found that using the Wii Fit to exercise is as beneficial as traditional methods in terms of improving balance, but users find it a lot more enjoyable and engaging. For them, it doesn’t feel like exercise, it feels like playing a game which has the same benefits as exercise.”

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The Monoclonal Antibody Anti-LINGO-1 Is Shown to Repair Damaged Myelin in Acute Optic Neuritis

Published in Neurology
News · April 15, 2015

April 14, 2015—Washington, DC—
An experimental monoclonal antibody has been shown to remyelinate in a phase 2 trial. This first demonstration of neural damage repair in a condition linked to multiple sclerosis reported by Diego Cadavid, MD, of Biogen, Cambridge, Massachusetts, at the American Academy of Neurology 67th Annual Meeting in Washington, DC, from April 18 - 25.
Acute optic neuritis is a common and often presenting feature of multiple sclerosis, and attacks can lead to persistent visual impairment through neuroaxonal damage in the retina and optic nerve. Acute optic neuritis typically affects one eye and is characterized by inflammation, neural fiber damage, and loss of myelin within the optic nerve. It is estimated that about half of individuals who suffer acute optic neuritis will later develop multiple sclerosis. As with other relapses of multiple sclerosis, corticosteroids hasten recovery, but do not improve its final outcome. Hence there is an unmet need for neuroprotective therapy to prevent residual disability from relapses.
Dr. Cadavid explained that the RENEW trial of BIIB033, a fully human anti-LINGO-1, was conducted in patients who had a first incident of acute optic neuritis. LINGO is a protein in neurons and cells that synthesize myelin. Blocking this protein with BIIB033 has been shown to promote myelin repair in animal models and was well tolerated in phase 1 studies.
RENEW was a randomized, double-blind, placebo-controlled, parallel-group study. Subjects (age 18 to 50 years) completed treatment with high-dose steroids and were then randomized 1:1 to 100 mg/kg BIIB033 IV or placebo once every 4 weeks (six doses total) and followed to week 32.
Remyelination was evaluated by recovery of optic nerve conduction latency using full-field visual evoked potential and compared with the unaffected fellow eye at baseline. Neuro-protection was studied by measuring the thickness of the retinal nerve fiber layer and ganglion cell layer using spectral-domain optical coherence tomography, and change in low-contrast letter acuity. Safety and tolerability were also evaluated.
Eighty-two subjects received BIIB033 (intent-to-treat, n=41; per-protocol, n=33) or placebo (intent-to-treat, n=41; per-protocol, n=36). In the per-protocol population, BIIB033-treated patients showed a significantly improved average difference in latency recovery vs placebo: 7.55 msec at 24 weeks (ANCOVA, P = 0.05) and 9.13 msec (mixed-model repeated measures, P = 0.01) at 32 weeks.

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Allegheny, PA. General Hospital Introduces New Treatment (Lemtrada) for Relapsing Multiple Sclerosis

Allegheny General Hospital, part of Allegheny Health Network, is the first hospital in the western Pennsylvania region to offer Lemtrada, a new treatment for multiple sclerosis which is providing hope for patients who haven't had success with other MS drugs.

PITTSBURGH, Pa., May 8, 2015 (GLOBE NEWSWIRE) -- via PRWEB - Physicians at Allegheny General Hospital (AGH), part of Allegheny Health Network, are offering a new treatment for patients with relapsing multiple sclerosis (MS).AGH is the first hospital in the western Pennsylvania region to offer the treatment, which is providing new hope for patients who haven't had success with other MS drugs.
FDA approved in fall of 2014, Lemtrada is an infusible medication designed to reduce flare ups in patients with relapsing MS and slow the progression of the disease.
"It's wonderful to have a new option for patients with aggressive MS who have tried various medications and still haven't achieved remission," said Thomas Scott, MD, director of the Multiple Sclerosis Treatment Center at Allegheny General Hospital.
MS is a chronic disease that affects the nervous system by damaging myelin, the protective coating covering nerves. People with MS experience progressive deterioration of myelin which may result in pain, tingling or burning sensations, vision loss, mobility difficulties, muscle spasms or stiffness, difficulty with balance and speech and impaired memory and cognitive function.
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Stem cell transplantation in multiple sclerosis - a Phase 2 trial

Autologous hematopoietic stem cell transplantation in multiple sclerosis: A phase II trial

  1. For the ASTIMS Haemato-Neurological Collaborative Group, On behalf of the Autoimmune Disease Working Party (ADWP) of the European Group for Blood and Marrow Transplantation (EBMT)
  1. Correspondence to Dr. Mancardi: glmancardi@neurologia.unige.it
  1. Neurologyvol. 84 no. 10 981-988


Objective: To assess in multiple sclerosis (MS) the effect of intense immunosuppression followed by autologous hematopoietic stem cells transplantation (AHSCT) vs mitoxantrone (MTX) on disease activity measured by MRI.
Methods: We conducted a multicenter, phase II, randomized trial including patients with secondary progressive or relapsing-remitting MS, with a documented increase in the last year on the Expanded Disability Status Scale, in spite of conventional therapy, and presence of one or more gadolinium-enhancing (Gd+) areas. Patients were randomized to receive intense immunosuppression (mobilization with cyclophosphamide and filgrastim, conditioning with carmustine, cytosine-arabinoside, etoposide, melphalan, and anti-thymocyte globulin) followed by AHSCT or MTX 20 mg every month for 6 months. The primary endpoint was the cumulative number of new T2 lesions in the 4 years following randomization. Secondary endpoints were the cumulative number of Gd+ lesions, relapse rate, and disability progression. Safety and tolerability were also assessed. Twenty-one patients were randomized and 17 had postbaseline evaluable MRI scans.
Results: AHSCT reduced by 79% the number of new T2 lesions as compared to MTX (rate ratio 0.21, p = 0.00016). It also reduced Gd+ lesions as well as the annualized relapse rate. No difference was found in the progression of disability.
Conclusion: Intense immunosuppression followed by AHSCT is significantly superior to MTX in reducing MRI activity in severe cases of MS. These results strongly support further phase III studies with primary clinical endpoints. The study was registered as EUDRACT No. 2007-000064-24.

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