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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, November 10, 2017

Predictors of Mortality in Veterans with MS

November 7, 2017

Initial presentation by multiple sclerosis MS type (progressive MS), higher level of disability, and associated motor, sensory, and cerebellar concerns are significant predictors of MS-related mortality, according to a recent study. The main causes of death, it was found, were MS disease itself, infection, respiratory disease, and cancer. Researchers reviewed electronic medical records of 226 veterans with MS regularly followed up from January 1, 2000, through December 31, 2014. They found:
  • Mortality at the end of the 15-year study period was 14%.
  • Patients with MS died prematurely, with a standardized mortality rate of 1.35 relative to the general (Oklahoma) population.
  • The main causes of death documented were MS disease itself (57% of cases), infection (43%), and cancer and respiratory failure (18% each).
  • Cox regression analysis using the whole cohort showed that progressive MS type; older age at entry into the study; presence of sensory, cerebellar, or motor (weakness and/or ataxia) concerns on presentation; more disability on presentation; higher body-mass index; being diabetic; never received disease-modifying therapy; and presence of pressure ulcers or neurogenic bladder were significant predictors of higher mortality.
Rabadi MH, Aston CE. Predictors of mortality in veterans with multiple sclerosis in an outpatient clinic setting. Int J MS Care. 2017;19(5):265-273. doi:10.7224/1537-2073.2016-067.

MS Views and News provides beneficial Multiple Sclerosis education, information, resources and services. 

MS Teamworks – Voices from the MS Community

MS Teamworks – Voices from the MS Community

Personal and Candid Stories that Provide Hope and Insight for those Living with MS

(Hackensack, NJ, October 2017)—A new online collection of powerful multiple sclerosis (MS) stories has been launched by the Consortium of Multiple Sclerosis Centers (CMSC) and Catamount Medical Education.  MS Teamworks is a portal featuring 20 informal talks in which patients, clinicians, and care partners share their MS stories.

The unique format and innovative content of these talks reflects the public’s increasing need for new, more accessible information on a chronic neurological disorder that affects more than 2.3 million people worldwide.  More than 200 new cases of MS are diagnosed in the United States each week.

The MS Teamworks talks are free and accessible to the public.  Additional videos will be added to the website as they are produced.  MS Teamworks includes candid patients accounts from varying genders and demographic perspectives of MS patients including topics such as:

“The Beginning Of My MS Journey”
“I Wish My Healthcare Professional Knew”
“How I Manage My MS”
“I Wish I Knew”
“It Takes A Team”
This series of frank patient talks highlight the diagnostic experience, navigation of multiple healthcare providers and insurance companies, the importance of being your own healthcare advocate, living with and managing MS, and the often overlooked impact of MS on the patient’s family.  

The MS Teamworks clinician talks come from some of the top specialists and experts in MS care and include:
“What to Expect When You Have MS;” Dr. Robert Shin, a neurologist specializing in MS, shares how clinicians typically diagnose MS and discusses the importance of early treatment

“My Role in MS Care;” Lisa Fox, a PA, describes how her role as a primary care physician is important in MS care.

“Integrative Medicine;” Allen Bowling, MD, PhD, a neurologist, explains the benefits of using integrating conventional and alternative medicine in MS management

“MS Beyond the Physical—Effects on Mental Health;” Fred Foley, PhD, a psychologist specializing in MS, offers insight into the wide-ranging mental health challenges presented by MS.

“My Role in MS (Rehabilitation);” Patty Bobryk, MHS, PT, MSCS, ATP, a physical therapist, explains the role of each member of the rehabilitation team in the care of a MS patient.

“Debunking Myths and Misperceptions;” June Halper, MSN, APN-C, MSCN, FAN and David E. Jones, MD, converse about common myths and misperceptions about MS.

Additional clinician talks include: “Yes, you can get MS as a Child,” “A Missed Opportunity, Diet and MS,” “The Roadmap to Motherhood,” “The ABCs of MRIs,” “I am Getting Worse, What Does that Mean,” and “The MS Team.”

“The goal of MS Teamworks is to provide messages of hope to all members of the MS community and to illustrate the power of coming together as team to provide a future for those living with MS,” said June Halper, CEO, CMSC. 

MS Teamworks was made possible by a grant from EMD Serono.  To access and share the MS Teamworks video talks, visit:  www.msteamworks.com.  Follow MS Teamworks on Instagram and Twitter: @msteamworks. 


CMSC, the Consortium of Multiple Sclerosis Centers, is the leading educational, training, and networking organization for MS healthcare professionals and researchers. The CMSC mission is to promote high quality MS care through educational programming and accreditation including live and online events, research grants, technical journals and papers, and targeted advocacy efforts. The CMSC member network includes more than 11,000 international healthcare clinicians and scientists committed to MS care as well as more than 60 Veterans Administration MS Programs and 225 MS Centers in the US, Canada, and Europe. The 32nd CMSC Annual Meeting, the largest gathering of MS professionals in North America, will take place May 30 – June 2, 2018, in Nashville, TN. For more information visit: www.mscare.org. Follow CMSC on Twitter: @mscare.org and Facebook: CMSCmscare.

Catamount Medical Education’s mission is to create learning experiences that maximize the impact on patient care. Education is delivered through live programs, including satellite symposia, local and regional meetings, and online events, as well as through self-directed, enduring formats such as podcasts, videos, Webinars, monographs, newsfeeds, and other enduring formats. Catamount seeks to add value to its education and ensuring a direct impact on patient care by incorporating practical tools for the clinician (e.g., exam room posters, pocket cards, patient education materials) into every educational experience. Learn more at www.catmeded.com.

Media Contact:  Annie Scully, 201-310-9252, annie.scully@mscare.org

First Patient Enrolled in Mallinckrodt Phase 4 Trial of H.P. Acthar® Gel (Repository Corticotropin Injection) for Multiple Sclerosis Relapse

-- Mallinckrodt's OPTIONS Trial to Assess Efficacy and Safety of H.P. Acthar Gel in Patients with Relapsing-Remitting Multiple Sclerosis --

STAINES-UPON-THAMES, United KingdomMay 23, 2017 /PRNewswire/ -- Mallinckrodt plc a leading global specialty pharmaceutical company, today confirmed enrollment of the first patient in the company's Phase 4 pilot study assessing the efficacy of H.P. Acthar® Gel (repository corticotropin injection) for the management of exacerbations of relapsing and remitting multiple sclerosis (RRMS) in patients whose relapse symptoms have not responded to a course of high-dose corticosteroids.
"Some MS patients may have relapse symptoms that don't resolve with steroid therapy, and in my experience, H.P. Acthar Gel may provide benefit in these cases," said Aaron Miller, M.D., a program advisor and participating site investigator from the Icahn School of Medicine at Mount Sinai in New York. "This study is an important step to confirming the appropriate patient type for this product as an approved and appropriate treatment for MS exacerbations."
H.P. Acthar Gel is U.S. Food and Drug Administration (FDA)-approved for treatment of acute exacerbations of multiple sclerosis in adults.
"Mallinckrodt is committed to providing alternative treatment options to patients who need them," said Steven Romano, M.D., Chief Scientific Officer and Executive Vice President at Mallinckrodt. "Clinical experience and current labeling support the use of Acthar to speed recovery from relapses in MS. We are pleased to enroll the first patient in the OPTIONS trial to better understand the patients who will benefit from Acthar therapy, and to support its role in the management of RRMS."
About the OPTIONS Trial
The Phase 4 clinical study is titled "A Multicenter, Randomized, Double-Blind, Placebo-Controlled Parallel Group, Pilot Study to Assess the Efficacy and Safety of H.P. Acthar Gel in Subjects With Relapsing-Remitting Multiple Sclerosis". The study will enroll patients with MS relapses of moderate severity and symptoms that have not adequately improved following a typical course of high dose IV or oral corticosteroid therapy, then randomize them to receive additional treatment with H.P. Acthar Gel or placebo in blinded fashion. 
Improvement in relapse symptoms will be assessed using several standard MS disease activity measures, including the Expanded Disability Status Scale (EDSS), MS Impact Scale (MSIS-29), and Clinical Global Impressions-Improvement Scale (CGI-I). Because this trial targets only a subset of RRMS patients experiencing relapses who have not responded acutely to corticosteroid therapy, the study may take a number of years to recruit.
Find more information about the OPTIONS trial here on the ClinicalTrials.gov website.


Longevity Receives Grant to See if Its Nerve-cell-protecting Therapy Will Work in MS

November 9, 2017

Longevity Receives $316,000 Grant to See if Its Nerve-cell-protecting Therapy Will Work in MS

Longevity Biotech has received a $316,384 grant from the National MS Society to see if LBT-3627. the nerve cell-protecting therapy it has tested in Parkinson’s, can work in multiple sclerosis as well.
The company designed the therapy to protect and repair damaged nerve cells and restore balance to the out-of-whack immune response associated with neurodegenerative diseases such as MS.
“We are thrilled to work with the National MS Society on this project to evaluate the performance of LBT-3627 as the basis of a new therapeutic strategy addressing the debilitating unmet needs of the millions of MS patients,” Dr. Scott Shandler, Longevity’s CEO, said in a press release.

MS Views and News is MAKING an IMPACT for those, affected by Multiple Sclerosis
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Pediatric & Adult MS Share Many Genetic Variants


Pediatric and adult multiple sclerosis (MS) share many genetic variants suggesting similar biological processes are present, a recent study found. Major histocompatibility complex (MHC) variants beyond HLA–DRB1*15:01 and HLA–A*02 are also associated with pediatric-onset MS (POMS). Researchers comprehensively investigated the association between established MHC and non-MHC adult MS-associated variants and susceptibility to POMS. Cases with onset <18 years (n=569) and controls (n=16,251) were included. Adjusted logistic regression and meta-analyses were performed for individual risk variants and a weighted genetic risk score (wGRS) for non-MHC variants. Results were compared to adult MS cases (n= 7,588). They found:


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Smoking, Comorbid Conditions in Persons with MS


Given the associations between smoking and comorbidities in individuals with multiple sclerosis (MS), health care providers should both (1) assess smoking history and quit attempts, and (2) encourage individuals with MS who smoke to become non-smokers and refer for treatment, as indicated, according to a recent study. In order to increase the chances that individuals will be successful in becoming non-smokers, clinicians would do well to also assess and treat depression in their patients who smoke and are also depressed. Researchers used a web-based survey to obtain cross-sectional data from 335 individuals with MS. They then examined the associations between smoking variables (current use, frequency, and quit attempts) and comorbidities, and found:


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Wednesday, November 8, 2017

Useful Tips for Managing Cognitive Health With Multiple Sclerosis

October 12, 2017

According to the National Multiple Sclerosis Society, around 65 percent of people living with the disease suffer from some cognitive issues — most notably, memory, concentration and speed of processing information.

If you find that you are frequently experiencing cognitive issues and that it’s affecting your daily life, you need to speak to your health care team. They’ll assess your problems and provide you with strategies to help you better deal with the situation.

The brain is a complex organ, but the more you use it, the more you protect it from the damage that comes with aging and neuromuscular illnesses. Engaging in activities that use your brain by encouraging thinking, concentration and creativity can help to ward off some of the cognitive effects of multiple sclerosis (MS).
Cognitive health can be improved by participating in activities such as painting or drawing, jigsaw puzzles, crosswords and sudokus, learning a new language, creative writing, watching game shows, and playing card and board games, which are all enjoyable ways of passing the time while keeping your mind active.
Exercising your mind doesn’t have to be a solo affair, engaging with others in discussions, joining a book club, becoming an MS advocate or taking part in faith fellowship meetings are all excellent ways to improve cognitive health while enjoying the company of others.

MS Views and News provides beneficial Multiple Sclerosis education, information, resources and services. 

7 Simple Tips for Traveling With MS

NOVEMBER 6, 2017   Mike KnightBY MIKE KNIGHT

With the year-end holiday season hurtling towards us, now is the time many of us start planning to hit the road — making way to see family, friends and loved ones, or seeking out warm weather havens or preparing for snow-covered vacations.
Here are some basic tips for traveling with multiple sclerosis:
1. Four words to travel by: You. Cannot. Over. Prepare.
Whether you’re going over the river and through the woods or taking a slow boat to China, travel is all about changing your scenery and routine and hopefully having fun. But many of us with MS (Progressive, Class of 2013), rely on a steady routine to make sure we take our medicine or exercise and stretch or eat right or get enough rest (or all of the above). Planning and preparation can help you create a “travel routine” that meets your needs while you enjoy new experiences, too.
2. Start with a med-check. 
It’s a good idea to keep all of your medications in their original, labeled containers along with a letter from your doctor noting you have MS and the list of the medications you’ve been prescribed. Some medications have to be kept within certain temperature ranges. Injectables mean needles and may raise eyebrows, especially at airports. Time your travel around any infusions you have scheduled, and if at all possible, avoid storing your medications in checked luggage just in case it gets lost. You may also want to have your doctor’s phone number on hand, too.
3. The early bird still gets the worm. 
Like it or not, some of our most memorable travel stories are about glitches and what went wrong while traveling (think Planes, Trains and Automobiles). Something will go wrong. Create a travel plan and agenda that gives you enough time to get everywhere early. Having extra time to deal with the unexpected will reduce stress for you and those you may be traveling with. It will also give you more time to locate restrooms, catch your breath and to get ready for the next part of your trip.
4. Start packing, ASAP.
According to the National Multiple Sclerosis Society, more than half of us with MS will experience cognitive challenges, which often include memory and planning difficulties. Think about where you’re going, what you’ll be doing, what you’ll need each day, create a list, pack your bags and then, if you can, have someone review your list and what you’ve packed just to be safe. If that’s not possible, or you’d like help with a list, go here.
5. Call ahead. 
Whether traveling by plane, train, boat, as part of a bigger tour or just wander-lusting around and staying in a hotel, chances are accommodations for mobility aids, shower stools and other similar support devices may be available. These things can make traveling easier, less stressful and much more enjoyable, and are more readily available by calling before you get there.
6. Seek — and accept — help.
  1. There are a number of travel agencies that focus on traveling with a disability. Though it may be more expensive to use their services, they are in the business of making sure trips for disabled travelers go smoothly and are memorable for the right reasons. If yours is a more elaborate trip, it may well be worth the expense to use such an agency.
  2. People frequently want to help. Let them. It makes life easier and it enters you into a fairly wonderful social contract, because people get an endorphin “high” when they help other people. So letting them help helps them — which will make you feel good, too.
7. Get going! 
One of the better resources for traveling with MS put it like this: “Don’t wait. Don’t save that dream trip until you retire. Or until the kids are grown. Or until you feel better. MS is unpredictable; go now. Seize the day, savor moments, and make your vacation unforgettable for all the right reasons. Focus on the instances that make travel enjoyable, not on your disease.”

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Exoskeletons make strides at Houston medical robotics symposium

By Andrea Rumbaugh - November 6, 2017 

Erin Edenfield of TIRR Memorial Hermann demonstrates the Indego Exoskeletons Therapy kit with the help of Marcie Kern on Monday during the International Symposium on Wearable and Rehabilitation Robotics.  Photo: Steve Gonzales, Houston Chronicle / © 2017 Houston Chronicle

Erin Edenfield of TIRR Memorial Hermann demonstrates the Indego Exoskeletons Therapy kit with the help of Marcie Kern on Monday during the International Symposium on Wearable and Rehabilitation Robotics.

Vikki McFarland took 554 steps. Multiple sclerosis put her in a wheelchair in 2007, but with the wearable robotics she recently walked around the NeuroRecovery Research Center at TIRR Memorial Hermann, activating motors at her hips and knees by tilting her torso.

"I felt like there were new muscles in my body that I haven't felt in a long time," McFarland said.

There are a host of wearable devices being used by clinicians. One, for instance, puts participants on a treadmill while wearing a belt attached to wires. The wires put force on the pelvic in a manner needed for the patients to adjust their stance while walking and, ultimately, retrain their walking patterns.

Continue Reading

Thin But Persistent Regrowth of Myelin Layers Sign of Health in CNS, Study Says

11.07.17 - 
The generation of a thin myelin sheath during remyelination — one that continues to protect nerve cells over time — is indicative of the long-term health and activity of the central nervous system (CNS) in demyelinating diseases such as multiple sclerosis (MS), a new study shows.
These findings, which aim to settle a scientific debate about CNS healing, are reported in the study “Thin myelin sheaths as the hallmark of remyelination persist over time and preserve axon function,” published in the journal PNAS.
The myelin sheath is an insulating layer of lipids (fats) and proteins that wrap around nerves. It works to speed the transmission of signals from the nerves to muscles, in order for a person to carry out activities such as walking, talking, and breathing.

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National Survey Reveals Majority of Women Newly Diagnosed with Multiple Sclerosis Have Concerns They Aren’t Discussing with Their Healthcare Team

Teva Pharmaceuticals and Nonprofit Group Can Do MS Team Up to Offer Tools for Better Communication Between Women with MS and Their Healthcare Providers

November 08, 2017 08:00 AM Eastern Standard Time

FRAZER, Pa. and AVON, Colo.--(BUSINESS WIRE)--Approximately 400,000 people in the U.S. have Multiple sclerosis (MS), an unpredictable disease of the central nervous system that affects 2-3 times as many women as men. Onset is usually between the ages of 20-40, a time when many women are building their careers, personal lives and families. Women newly diagnosed with MS have significant concerns about how these parts of their lives could change, but a survey asking about personal relationships, reproductive issues and employment concerns shows 98% felt many of these concerns were not addressed by their healthcare team when first diagnosed. 

The survey was conducted by Wakefield Research for Teva Pharmaceuticals among 1,000 women diagnosed with MS in the last 5 years. It also showed that 71% of respondents believed talking to their doctor earlier or more openly would have made the first six months after diagnosis easier. To empower women to take charge of their MS, Teva and Can Do MS have developed tools to help women and healthcare professionals engage right from the start about topics that matter to women. 
These resources can be found at mscando.org/womenandms.

The top reason women cited for not talking to a doctor or other healthcare professional about either their work, family planning or personal relationship concerns was that they aren’t comfortable talking about them. The new survey is an important examination of these areas and the concerns women face after diagnosis, including: ability to care for themselves (34%), ability to care for their current or future children (22%), career and work life demands (17%), ability to have children (15%) and personal relationships (13%).


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Tuesday, November 7, 2017

"Down There" -- Sexual Dysfunction in Multiple Sclerosis

Published on Nov 7, 2017

Dr.B discusses sexual dysfunction in Multiple Sclerosis

MS Views and News is MAKING an IMPACT for those, affected by Multiple Sclerosis
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October 11, 2017
We hear about ‘breakthroughs’ frequently in MS, and mostly of course, they are not! On this occasion, despite the drug that researchers were testing being an old drug commonly prescribed for hayfever, they found definite evidence of improved neurological function after taking the drug, and the improvement persisted when the drug was stopped. It seems highly likely, given what the researchers have previously tested, that the drug promoted remyelination, something which no agent has previously been able to do.
The research team at University of California, San Francisco (UCSF), led by Prof Jonah Chan tested the drug clemastine (trade name Tavist) which has been licensed by the FDA for 40 years now for use in hayfever and allergies and is now a cheap generic. Importantly they tested the drug in people with chronic longstanding MS who had quite a bit of central nervous system damage. To their surprise they used a sensitive test of the speed of transmission of nerves in the visual pathways and showed that it speeded up substantially, meaning that transmission through the whole central nervous system was likely to be speeded up for those taking this medication. The dose of drug used was 5.36mg twice daily, for a daily dose of 10.72mg, whereas for allergy, the recommended dose is no more than 2.68mg three times daily, for a daily dose of 8.04mg. The only important side effect of large doses is sleepiness, and in this study, participants were more likely to report fatigue, which may reflect that.
While much more work needs to be done before this drug could be licensed in MS, the research is really a breakthrough, showing that repairing damaged myelin is now a realistic possibility. Read the full paper here.

MS Views and News is MAKING an IMPACT for those, affected by Multiple Sclerosis
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Monday, November 6, 2017

Help to Stop Congress from eliminating the medical expense deduction

Written by:  Audrey Greenfeld, 

As you may know, Congress is proposing to eliminate the medical expense deduction which would have a devastating impact on me and everyone else in the MS community. 

I started a petition on change.org and I would really appreciate if you would sign my petition that will then be sent to Congress -- 

Audrey Greenfeld


Tips for Managing New Fall Routines from a Working Mom With MS

When kids head back to school and the fall routine kicks in, some parents may be thrilled. Others may find adjusting to the new routines challenging. Kate Milliken, founder of an online support community called MyCounterpane and mom of two, has found ways to excel at managing this transition while also living with multiple sclerosis (MS).
“I was diagnosed with MS 10 years ago, when I was 35 years old and single,” said Kate. “My symptoms came on suddenly, and by the time I called a neurologist, I couldn’t walk. My doctor told me, ‘I have a hospital bed waiting for you… don’t even pack.’ This was right before Christmas, and it was a very lonely time for me.”
At that time, Kate believed her life wasn’t going to go the way she had hoped. But a blind date after her diagnosis unexpectedly changed that. Soon after, Kate got married and had two children— the first when she was 38 years old and the second at 40.
Today Kate finds great joy in balancing work and family. She shares tips for managing the back to school transition and adjusting to new routines that help with her five and six year old. These tips can be helpful for all parents, not just those living with a chronic autoimmune disease.
Continue reading

MS Views and News provides beneficial Multiple Sclerosis education, information, resources and services. 

How an MS Advocate Finds Inspiration Through Giving Back to the Community

Written by:   HERWriter

Stuart Schlossman has an impressive resume – he is the founder and president of MS Views and News (MSVN), a nonprofit 501(c)(3) organization created to provide information about multiple sclerosis (MS) to people online and through in-person educational seminars.
Before starting MS Views and News, Stuart donated much of his time to the National Multiple Sclerosis Society, chairing walk sites for five years and fundraising. He also helped to spearhead various educational programs and co-facilitated a self-help support group.
In speaking with him, even for a short time, you can see Stuart is the kind of person who tries to find answers to the questions people with MS most often ask. A passionate man, Stuart has worked for many years to help make MS information more easily accessible and sharable with the community.
Stuart spoke with us recently about his motivation, what he is grateful for and his journey to becoming the motivated MS advocate he is today.
EmpowHER: Take us through the beginning of MS Views and News.

GatherMS.com: Putting Multiple Sclerosis Resources at Your Fingertips

Sponsored by: Genentech
Whether you need a ride to the doctor or are too tired to go out for groceries, there may be a service that can help. GatherMS.com is an online platform that brings together existing resources and support services to help navigate the everyday unpredictability of MS.