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Friday, November 21, 2014

Wellness, Exercise, Emerging Therapies and Invisible Symptoms of Multiple Sclerosis

MS Educational Videos recorded on November 8, 2014 from Miami, Fl.

Wellness and Exercise for Multiple Sclerosis

Emerging Therapies and Invisible MS Symptoms

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Woman won’t let multiple sclerosis keep her from sport she loves

Dressage rider Mary Jordan was the third person in her family to be diagnosed with multiple sclerosis. She watched her father and sister battle the disease before receiving the diagnosis herself 12 years ago. MS is an incurable autoimmune disorder that causes the body to attack its own nerves.

Jordan, a Wellington resident who lives in Maine during the off-season, was a lifelong equestrian before developing MS, and she was determined to keep riding while battling the disease that took her father’s life. Jordan’s tenacity has taken her around the world to various para-equestrian dressage competitions. In September, she won the Great American Insurance Group/USDF Region 8 Championships, qualifying for the 2014 U.S. Dressage Finals with a horse loaned to her by Vinceremos Therapeutic Riding Center in Loxahatchee. Jordan was the first para-equestrian to compete in the dressage finals, and she credits Vinceremos for letting her ride her “poetically-moving giraffe,” Rubicon 75.

READ MORE - Click here

When I was Diagnosed...

Stu's Views:   In 1998 when I was diagnosed there was only:  

Avonex, Betaseron, Copaxone  for Relapsing Remitting MS (RRMS)
and Novantrone 

Until late last week there were these (11) Disease Modifying Therapies 


Of the above, Three being Orally taken
(7) Injections - with one being every other week (yay)
 and (1) infusion

With the recent FDA approval of Lemtrada (Alemtuzumab)
Learn about this new medication. 
Click: http://www.lemtrada.com/ 

Now we have TWELVE (12)  - disease modifying therapies

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Wednesday, November 19, 2014

Neurologist Recommends MS Approach Based on Alternative Medicine

Dr. Allen BowlingUnconventional medical approaches and lifestyle changes may help patients suffering from multiple sclerosis (MS) improve their health and well-being, according to Allen Bowling, MD, PhD, an internationally recognized neurologist and specialist in alternative medicine. The physician has designed a seven-step method based on his expertise, which is presented on his new book “Optimal Health with Multiple Sclerosis.”
The book “Optimal Health with Multiple Sclerosis: A Guide to Integrating Lifestyle, Alternative, and Conventional Medicine,” which was published this month, sets forth a strategy to fight the symptoms of the disease with unconventional methods, and the author believes that there are “three big areas that are often neglected are exercise, diet, and personal well-being.” However, “these areas are especially important for optimal health because they may impact the disease process of MS, MS symptoms, and also other medical conditions that may adversely affect MS,” he says.
The Seven Step Approach explained in the book uses 50 safe and effective lifestyle strategies, combining lifestyle, alternative, and conventional medicine. The main purpose of the approach is to improve both the health and quality of life of MS patients by providing diet instructions, exercise tips, and information on the potential benefits of dietary supplements and herbs.
“Some of these methods empower people by allowing them to use their body’s own resources for therapeutic effects,” explains Bowling. “For example, exercise in conventional as well as unconventional forms, such as tai chi, yoga, and Pilates, may improve multiple MS symptoms and may even impede the disease process itself. Dietary approaches such as vitamin D and generally healthful eating may also improve multiple symptoms and possibly slow down the disease.”

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Could an electric shock to the TONGUE help MS patients to walk? Stimulating the muscle improves balance

  • Scientists at the University of Wisconsin-Madison applied painless electrical impulses to MS patients’ tongues during a 14-week experiment
  • Multiple sclerosis (MS) is a neurological condition where communication between body and brain is disrupted, resulting in loss of muscle control
  • Experts found that treatment improved the balance of people with MS 
  • Treatment also doubled fluidity of movement compared to a control group

Electric shocks applied to the tongue (stock image pictured) could help treat the effects of multiple sclerosis (MS), allowing people with the disease to walk more easily

A team from the University of Wisconsin-Madison, led by neuroscientist Yuri Danilov, applied the electrical impulses to the tongue as part of physical therapy sessions, for the 14-week duration of the trial, Scientific American reported. 
They discovered that their patients gained twice as much balance and fluidity of movement compared to people with MS who did the same physical therapy exercises without the new treatment. 

MS is a neurological condition that affects around 100,000 people in the UK. The disease causes the insulation around nerves to become damaged (illustrated), which disrupts communication between the body and brain, resulting in loss of muscle control
MS is a neurological condition that affects around 100,000 people in the UK. The disease causes the insulation around nerves to become damaged (illustrated), which disrupts communication between the body and brain, resulting in loss of muscle control

Dr Danilov explained in the Journal of Neuro-Engineering and Rehabilitation that nerves on the tip of the tongue are connected to the brain’s stem, which is a hub responsible for lots of the body’s basic processes.

It’s a good place to apply tiny electric shocks because saliva is an electrically conductive fluid, and stimulation can be applied at a much lower voltage than is required for skin.

Dr Danilov said: ‘We have probably discovered a new way for the neurorehabilitation of many neurological disorders.’
The team is also exploring whether tongue stimulation can be used to treat patients who are losing their sight, have had a stroke or suffer from Parkinson’s.

In a previous study, experts enabled a blind woman to see a flickering candle for the first time - via her tongue.
Researchers developed a tongue-stimulating system that translated images detected by a camera into a pattern of electric pulses that triggered touch receptors.

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Tuesday, November 18, 2014

Researchers Find Link Between MS, Eye Disease

A retrospective study shows that almost 60 percent of patients with both uveitis and MS are diagnosed with each within five years. This is the first study to provide a detailed description of the relative onset of uveitis and MS and to calculate the likelihood of an MS diagnosis among uveitis patients.

Researchers from Casey Eye Institute at the Oregon Health and Science University and the University of Heidelberg in Germany conducted a database search of approximately 3,000 patients with uveitis from the Casey Eye Institute and 5,319 patients from the University of Heidelberg between 1985 and 2013.

Researchers found that MS is 18 times more likely in an American population 21 times and more likely in a European population with uveitis, relative to the general population. The study found that MS was diagnosed before uveitis in 29 percent of patients, simultaneously in 15 percent of patients, and after uveitis diagnosis in 56 percent of patients.  

Uveitis causes swelling and irritation of the middle layer of the eye and can lead to permanent vision loss if left untreated. Uveitis can be a sign of MS, and it is estimated that 1 to 10 percent of MS patients have uveitis.

The study was presented at AAO 2014, the 118th annual meeting of the American Academy of Ophthalmology in Chicago.


A New Challenge -- a patient's story

by Denise A. Coleman

I had already gone through several major life changes, leaving my career and seeing my daughter get married, have children and move 50 miles away from me. This was a lot but to have my physical, mental and emotional life affected by Multiple Sclerosis at the same time was overwhelming. Multiple Sclerosis (MS), is a chronic neurological condition that affects the Central Nervous System (CNS). When the myelin sheath or nerve fiber is damaged, nerve impulses to and from the brain is distorted or interrupted causing the symptoms, which are unpredictable and vary person to person.

In 1998, I had to leave my career, one I loved, and stop driving, both which helped me maintain my independence. I lived in Manhattan, which was great because there was plenty of cultural, intellectual and enjoyable things to do and an incredible city bus system that ran 24/7, and the buses were accessible whether I was on crutches, in a wheelchair or even when I was on my motorized scooter.

Over time I adjusted to most of the life and lifestyle changes I faced. I admit I had some difficult times, especially because my income decreased by about 60%. Plus I had to physically adjust as the number of MS symptoms I experienced increased and got worse. It is interesting how much you spend just going to work, and therefore how much you save when you stop—car and car insurance, parking fees, tolls and gas, clothing and dry cleaning, lunch out with colleagues, etc. etc. Trust me, I missed my lost income because I wanted to travel and start doing things I hadn't been able to do while Jen was younger. My status of being a disabled woman and the physical and financial changes that came with that had a huge impact on my life then and now, 16 years later.

Now that I have adjusted to these changes what's the big deal about a few more, right? Well that can depend on what size the adjustments are—there are small changes and huge changes, and I prefer small ones, or maybe mid-size. I decided to make a few significant changes in the past few years; I bought a house in Huntington, New York, to be near my daughter and her family. I lived on Long Island for the first 40 years of my life, so it wasn't all that new to me. In fact, it was familiar—I recognized the traffic on the Long Island Expressway, and all the growth in business and homes. Perhaps most familiar, which makes life as a disabled person very difficult, is the lack of public transportation, specifically accessible bus transportation. Yes there are County and Town Vans for People with Disabilities, however they only run until 7:30 PM, and on Sunday they have limited routes and times. It is very difficult to try to have a fulfilling life relying on pubic transportation, which I did in Manhattan very successfully. I used the NYC Bus Transit System, which runs 24/7, as does the Access-A-Ride, the city's Van. In short, I could take a bus or van anywhere in the city, any time of day or night, something I don't think I fully appreciated when I lived there.

I want to close this post with some good news. Over the last ten years I have worked with several organizations to advocate on behalf of people with MS, chronic pain, and other conditions, but for the two years before moving to Huntington, I pulled back and dealt with the changes going on in my own body and my life. Now that I am on LI, and I have made the necessary physical and emotional adjustments to my life with MS, I have gone back to my advocacy work. I am on the Government Relations Committee of the Long Island Chapter of the MS Society and have updated my relationship with the US Pain Foundation. I am also starting my own advocacy program in an effort to enhance the quality of life of people with chronic conditions and disabilities.

Several people have volunteered to work with me and I hope that more will because we need to reach out to County Legislators, print and broadcast media, people with these conditions and disabilities, and perhaps most of all the general public, people who don't know the impact illnesses like MS have on the lives of someone who has it, their family, friends, and neighbors. The more we educate people about these issues the better chance we have of achieving the changes needed to enhance the Quality of Life of everyone who needs assistance to live as independent and fulfilling a life as they want and are able to. Think about it, and then see what you can do to help in this cause. Thank you.

Denise Coleman



MS Company Seeks Patient and Caregiver Feedback on Latest Innovations

When it comes to improving multiple sclerosis (MS) care, the opinions of those affected by the disease matter most. For this reason, an MS biotechnology company is currently conducting a survey to help evaluate new programs and innovations aimed at making life easier for people with MS. The information collected will represent the thoughts and needs of the MS community.

Participation in the survey is exclusively for people who have MS and their caregivers. As a participant, you can directly influence the products and approaches this company is exploring.

To take the survey, click here. It should take about 5 minutes to complete and your responses are confidential.


LiveStream MS Q&A - Saturday Nov 22nd 2014

Do You Have ANY MS Related Questions? 
Ask them here and then we will ask the Professionals at our upcoming LiveStream Webcast Q&A... 

Reply to this request asking questions that can be answered by an MS Neurologist, Nurse Practitioner, Psychologist or Disability Attorney. -- 

Leave your questions here as a comment OR Private message to us via email to: questions@msvn.org

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Sunday, November 16, 2014

Will It Be Possible To Predict Good And Bad Days For Multiple Sclerosis Patients?

Highmark Blue Cross Blue Shield is trying to assess the possibility of predicting good and bad days for people suffering with multiple sclerosis (MS) and help them to achieve a higher quality of life.
The four-week pilot program enrolled almost 100 participants that wore a body sensor patch, which collected data during their daily routines. This pilot program seeks to determine if some factors, such as weather, sleep, and activity levels can help predict  future symptoms such as fatigue. If so, it would be possible to help those living with multiple sclerosis and suffering with “unpredictable” disease-related fatigue.
“We want to see if those symptoms are actually not as unpredictable as once thought,” said Paul Puopolo, Highmark’s vice president, who is responsible for the pilot project. “Highmark is the only organization approaching fatigue from a lifestyle-based process. This is a program that could change lives. It would be a forecast, not a cure, and it wouldn’t be a 100 percent sure thing. But if it works, it could give those with MS just a little more control of their lives and their disease.”
MS patients often complain because of severe muscle fatigue; they experience a sudden onset of becoming overwhelmingly tired, which can be debilitating and an obstacle for them in managing their everyday life when it comes to work, social life, and family.
Puopolo said: “Any indicators or predictors that emerge from the pilot could help people with MS forecast when they could be affected by their symptoms (…) It would give them the chance to proactively plan around potential fatigue spells, have a higher degree of control and plan their most important activities for what would be anticipated to be successful days.”
The data collected from the patients that enrolled in the pilot study is currently being analyzed, and Highmark Blue Cross Blue Shield expects to know the results within the next few months.
Source: Multiple Sclerosis News Today

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Sailboat Crewed by MS Patients Circumnavigating the Globe

OHopeOceans of Hope, a 67-foot sail yacht currently docked at North Cove Marina, New York, is on a round-the-world voyage to become the first ship to ever circumnavigate with a crew of people who have Multiple Sclerosis. The voyage, initiated by Sailing Sclerosis Foundation, set sail from Copenhagen, Denmark on June 15th 2014. While in New York, Oceans of Hope will be in New York from November 11-16, and will feature sailing days for local MS patients, and her crew will visit a local MS patient care center. Oceans of Hope will host events and ports of call during the 17 months voyage to allow as many people as possible to participate in sailing activities. In every port of call, local MS patients are taken day-sailing aboard Oceans of Hope and a variety of other sailing craft to introduce them to the freedom that sailing provides.
The vessel is scheduled to call at Fort Lauderdale, Florida, on December 5-9, where it will be recognized again at the MSF Hats Off Gala with a Beacon of Light Award. On the first leg of its voyage, Oceans of Hope has already called at Kiel, Germany; Amsterdam, Holland; Portsmouth, England; LaRochelle, France; Lisbon, Portugal; and Boston, Massachusetts.
Oceans of Hope is a Sailing Sclerosis Foundation project that aims to change perceptions of multiple sclerosis, inspiring people with the disease to overcome their own personal challenges by telling the stories of those taking part in the first ever circumnavigation in a vessel crewed by people with MS.

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