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Saturday, November 10, 2018

Motorcyclists log 230,000 Miles and Raise $22K for Multiple Sclerosis

Riders from all across USA rode their motorcycles for 50 days while raising 
awareness and funds for Multiple Sclerosis.

LONDONDERRY, N.H. - Nov. 10, 2018 - PRLog -- Since it's inception five years ago, the MS5000 has raised over $125,000 for charity organizations that benefit MS patients and their families. This year, 57 riders from all over the United States rode their motorcycles as many miles as they could over 50 days while soliciting donations from their family and friends. From September 1st through October 20th, they documented their miles, gaining one point for every mile and ten points for every dollar they raised. The winner gets a trophy and bragging rights, and for 2018, Luke Rutledge from Missouri won by riding 6762 miles and raising a whopping $3374 dollars!

100% of the proceeds went to MS Views and News, Inc., and their Ride to Reach Rural America initiative.
"It is really incredible, to see these men and women dedicate so many hours and miles to help us deliver education, inspiration and hope to so many families struggling with MS in remote areas of the country," 
said Stuart Schlossman, the President of MS Views and News.

The MS5000 motorcycle challenge is organized by Longhaulpaul (Paul Pelland) who despite having MS himself, is 340,000 miles into his million mile journey Chasing the Cure for Multiple Sclerosis.

Paul presents Stuart with 2018 MS5000 proceeds



Friday, November 9, 2018

Taking a (small) step back from ActiveMSers

Written by: Dave Bexfield - Active MSer's
Dave basicGreetings, please don't panic, let me explain. A few weeks ago I was in Barcelona, Spain, mesmerized. I was watching a traditional Catalan castell, or human tower, being built. The biggest members of the group--over 100 strong made up of men, women, and children--form the stout base. Then the tower assembles upward, level after level (the record is 10!), until a small child scales to the top with a final wave. There's a reason UNESCO calls it a masterpiece to be treasured. I recorded one such tower for you to watch here being done by the current world champions (the phone was off to the side, as I didn't want to miss a moment with my own eyes).

The experience made me realize that we optimistic misfits must rely on each other as we build our towers of hope--mustering the motto of castellers: strength, balance, courage, and common sense--in our quest to manage the challenges of our diseases with unwavering resolve. And it made me realize that you would be okay if I'm not always the bottom pillar. The weight of daily Facebook, Twitter and Instagram posts, weekly videos, frequent blogs, occasional guest posts, monthly newsletters, and regular website updates had been catching up to me. And I was still stuck on Chapter Three of the book I promised to write nearly a year ago. So I told Laura I was thinking of, maybe, possibly, retiring....

I wasn't prepared for the full-on "what-you-talkin'-bout-Willis" stink eye that spouses deploy in times of incredulous befuddlement. Laura was having none of that.

"Really," she said. "Thousands of people depend on you. You really, really enjoy helping folks. You love ActiveMSers. And now you want to sit on the couch and do what? Eat Cheetos? Drink beer?"

I briefly contemplated saying "obviously both" before wising up. She was right, of course. I consider all of you my friends, even if our paths have never crossed except in the virtual world. And for those who have reached out to me via e-mail, I've saved all your letters, every single one, and have forwarded dozens on to my parents (names and e-mail addresses removed for privacy) to show them that they raised a decent kid.

When I started ActiveMSers, I had no grand intentions of monetizing the website. And over the years as social media "influencer" became a new career option, I've resisted, trying my best not to commercialize it to avoid the biases and inauthentic pitches that plague so much on the internet today. I still don't accept ads, paid guest posts, endorsements, or sponsorships despite seemingly daily inquiries. This might sound downright crazy, as I am not a tax-deductible nonprofit, just a non-profitable nonprofit, which means virtually all funds to fuel ActiveMSers--thousands of dollars over the years--have come out of my pocket (well, technically Laura's). 

Yet I wouldn't have it any other way, and it's not because I'm some virtuous dude. Thanks in no small part to you and your support--from my New Mexico True contest win complete with an oversized check to my epic fight with my health insurer that made the New York Times ... complete with a drawing of an oversized check--I'm in a fortunate position where I can most definitely afford it. Indeed, I am forever in your debt. (And knowing me, I'll probably need your help again for a future kerfuffle or two since I have a penchant for getting into mischief.)

Part of my goal at ActiveMSers has long been to be a gatekeeper of sorts, to sift through the reams of MS news that wind through the interwebs to find the nuggets that really matter (and amusing silly ones that don't). I subscribe to dozens of medical newsletters, research journals, health sites, and MS-specific blogs. I scan the feeds of hundreds of social media accounts to glean the latest breaking news about our disease. I read every available MS and neurology magazine cover to cover. I've been doing this since March 2, 2006, the day I launched ActiveMSers, now one of the longest running MS blogs in existence, perhaps the longest.

But then on the cruise, the one my father survived despite failing the life boat drill, my gate key was infuriatingly wonky. On the open ocean, internet access can suck like the Cleveland Browns, especially when you don't cough up extra dough for "premium" access (or draft football players poorly). So I gave up trying to stay on top of everything MS related, mustering only a few random posts. And it felt strangely okay. I missed you guys, but I didn't miss yet another promising EAE mouse-model MS study that is a decade away from human clinical trials, or the 6 must-do diet tips for MSers that are decidedly not "must do," or the caustic rhetoric of politics that is consuming Twitter and Facebook no matter how I hard I try to avoid it.

No wonder I have MS fatigue, just not the kind that plagues most of us. So I've made the decision to lower stress and pull back a little. A little, just a little! But you will notice some changes. While I plan to stay on top of exercise and major MS research, I've unsubscribed en masse to nearly all my MS mailings (a dozen plus a day) including even the blogs of friends, so I'll regretfully miss some general MS tidbits. I'll stay on Twitter and Facebook and Instagram, just not daily--it's not worth the energy and brain suck. I'm also not going to fret about deadlines, self-imposed or otherwise, so the newsletters and blog posts and YouTube videos will come when they come. The forum will continue unchanged, but we critically need new castellers to support this effort, as our regular contributors (in particular AMF Adventures, aka Larry, aka MS Yoda) deserve a spell from their heavy lifting over the years. And our main website will keep chugging despite not being as mobile-friendly as I'd like it to be (sorry, that's an ongoing frustration with no easy fix other than a full redesign). Heck, you might even see some entertaining new wrinkles from ActiveMSers in other areas, and not just those sprouting on my forehead. I've got some exciting avenues I still want to explore!

I hope you understand that making this decision to separate a bit from the MS space was not one I made lightly. But it's a shit-ton better than maybe possibly retiring. And I can still show my face publicly, as frightening as that may be (see right), which was hammered home on the day after our return. As I rolled into my favorite Indian restaurant, one patron's eyes brightened noticeably as she waved to me. Crap, I thought. We probably chatted at some friends' party for a solid hour, or some such thing, and I now have no clue who she is.

"Dave, I have MS and I am a huge fan of ActiveMSers. I live just up the road from you and I was wondering when I'd finally get to meet you! My name is Alexa."

Laura looked at me. You know that look. The I-told-you-so look. Oh hell no, I'm not retiring. Be active, stay fit, and keep exploring!

Dave Bexfield

Wednesday, November 7, 2018

READ THIS: Floodlight Open is a study that we hope one day will allow participants, physicians and scientists to monitor MS symptoms and health

Floodlight Open is a study that we hope one day will allow participants, physicians and scientists to monitor MS symptoms and health over time using a smartphone. With the ultimate goal of creating practical tools to improve the lives of people living with MS.

What is Floodlight Open?

Floodlight Open is a study that we hope one day will allow participants, physicians and scientists to monitor MS symptoms and health over time using a smartphone. With the ultimate goal of creating practical tools to improve the lives of people living with MS.
Understanding MS
MS is an insidious and unpredictable disease that can be hard to track and measure. Floodlight Open aims to fill in the gaps and help complete a more holistic picture with the hope to one day help improve care.
Floodlight Open is powered by you. The more we know about your personal journey, the more we can learn about MS. Each data point from each person contributes to a unique and open dataset designed to help move MS research forward.

CLICK HERE to See all information concerning FLOODLIGHT

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Sunday, November 4, 2018

Caregiver Rights, Financial Responsibilities and Proper Documenation

Presented by: Craig Dorne, PA, Attorney - Miami, Fl.
It is essential for every person and caregiver to understand their rights and obligations. Too frequently people fail to execute the documents necessary to express their desires. The failure to execute the documents can lead to a person’s desires not being met and a person making their decisions being someone other than the person they want.



Simple methods for staying relaxed

For many people, the word "meditation" calls up images of alternative lifestyles or non-Western traditions. However, public perception of meditation has started to shift in recent years due to the scientific community's growing interest in the topic.
There’s still no conclusive proof that meditation makes a measurable, biochemical change in the body or the mind. But some psychologists have proposed that this form of relaxation may help people, including those with multiple sclerosis (MS), reach a calmer state of mind. And this could help reduce the impact of stress.

Many paths to calm

There are many ways to meditate. Just keep an open mind and see which type of meditation works best for you. Before you begin a meditation session, talk to your doctor, select a quiet place, dress comfortably, and find a comfortable place to sit.
Common meditation techniques include:

Thinking breath

A practice of focusing exclusively on your breath.
  • Feel the cool air rushing in through your nostrils as you inhale, and the warm air brushing against your upper lip as you exhale
  • Don’t be discouraged if other thoughts enter your mind. View them the same way you view scenery from the passenger seat of a moving car—let them vanish in the distance
  • Turn your thoughts again to your breath, keeping track of every detail as you breathe in and out—and feel the tension slip away


The goal of visualization is to shift your thoughts away from everyday concerns to an imaginary world of your own choosing.
  • Close your eyes, breathe deeply, and imagine a calm scene. It could be a place you've actually been to or a place you'd like to visit. If your mind wanders, start again
  • Experience the scene with your mind. If you chose a tropical scene, use your imagination to hear the waves brushing the shoreline and see the palm trees sway
  • Continue to explore for about 10 minutes. You'll begin to feel relief as stressful elements in your real environment are gradually replaced in your mind by the tranquil sights on your imaginary horizon
  • Now go one step further and imagine yourself actually entering the scene you've created               


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Stress incontinence and MS

Stress incontinence is leakage of urine when your bladder is under pressure, for example when sneezing, coughing or lifting something heavy. This happens when your pelvic floor muscles are weakened. In MS neurological damage can result in weakness to the pelvic floor.Oct 15, 2018

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Corticohippocampal Dysfunction In The OBiden Mouse Model Of Primary Oligodendrogliopathy.


Despite concerted efforts over decades, the etiology of multiple sclerosis (MS) remains unclear. Autoimmunity, environmental-challenges, molecular mimicry and viral hypotheses have proven equivocal because early-stage disease is typically presymptomatic. 
Indeed, most animal models of MS also lack defined etiologies. We have developed a novel adult-onset oligodendrogliopathy using a delineated metabolic stress etiology in myelinating cells, and our central question is, "how much of the pathobiology of MS can be recapitulated in this model?" 
The analyses described herein demonstrate that innate immune activation, glial scarring, cortical and hippocampal damage with accompanying electrophysiological, behavioral and memory deficits naturally emerge from disease progression. 
Molecular analyses reveal neurofilament changes in normal-appearing gray matter that parallel those in cortical samples from MS patients with progressive disease. Finally, axon initial segments of deep layer pyramidal neurons are perturbed in entorhinal/frontal cortex and hippocampus from OBiden mice, and computational modeling provides insight into vulnerabilities of action potential generation during demyelination and early remyelination. We integrate these findings into a working model of corticohippocampal circuit dysfunction to predict how myelin damage might eventually lead to cognitive decline.
Free full text

Stress-full life events and multiple sclerosis: A population-based incident case-control study.

 2018 Sep 22;26:168-172. doi: 10.1016/j.msard.2018.09.026. [Epub ahead of print]

Author information

Department of Epidemiology, School of Public Health, Arak University of Medical Sciences, Arak, Iran. Electronic address: ebrahemen@gmail.com.
Department of Epidemiology and Biostatistics, School of Public Health, Knowledge Utilization Research Center, Tehran University of Medical Sciences, Tehran, Iran.
Department of Epidemiology and Biostatistics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran.
University at Buffalo, Jacobs School of Medicine and Biomedical Sciences, Buffalo, NY, USA.
Jacobs School of Medicine and Biomedical Science, University of Buffalo, NY, USA.



While sizeable evidence regarding the association between stressful-life events and multiple sclerosis (MS) disease activity (clinical and/or radiological) was previously documented, their relation to MS risk is controversial. We aimed to investigate the possible association of stressful-life events and multiple sclerosis risk after adjustment for relevant confounders in an Iranian population.


This was a population-based incident case-control study that recruited 547 MS cases and 1057 healthy controls between August 2013 and February 2015, Tehran. The patients were identified using the Iranian MS Society based on 2010 McDonald criteria. We used standard random digit dialing protocol for control selection. Logistic regression model was applied to estimate the odds ratios (95% CI) adjusted for physical activity, age, gender, tobacco smoking, waterpipe smoking and passive smoking.


While total life events number was not associated with risk of MS, homeless periods OR 3.85 (1.65-8.90), p = 0.002 as well as divorce OR 2.11 (1.24-3.58), p = 0.005 increased the risk of MS. However, marriage OR 0.59 (0.41-0.86), p = 0.006, death of ones' dear OR 0.60 (0.44-0.82), p = 0.002 and joblessness OR 0.61 (0.41-0.91) reduced the risk of MS.


We could not detect a statistically significant role for the total stressful life event during the last 3 years and MSdiagnosis. However, there is some evidence confirming the possible role of some individual life events, i.e. divorce and periods of homelessness as potential risk factors for MS and conversely, having married as a protective factor in MS onset.


Iran; Logistic regression; Multiple sclerosis; Population-based incident case-control; Stressful life events


The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study.



In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes.


The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients' journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers.


We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs.


Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS.


This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence.


cost sharing; insurance; mixed methods; multiple sclerosis; out-of-pocket costs; patient adherence; pharmaceutical services; self-report; surveys and questionnaires


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