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Friday, July 22, 2016

A bike that mimics multiple sclerosis presents the disease on a new level


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What do you see in this image?

Looks pretty straightforward, right? A classic 10-speed bike, like you might find in your parent’s garage. Nothing exceptional.
But things aren’t always how they seem at first glance. In fact, a quick ride on this bike would throw a lot of people off, and that’s exactly why a group of Australian designers, neurologists, and advocates created it.

This bicycle was designed to mimic the symptoms of multiple sclerosis.

You may know someone who has it. (The disease, not the bike.)
Roughly 2.5 million people out there know what it’s like to live with multiple sclerosis, a disease that attacks the brain and spinal cord, making it hard for the brain to properly talk to the body.
It’s mysterious and often frustrating, especially considering that researchers are still unsure what causes it. That, mixed with its unpredictable nature as a disease, makes it hard for people to grasp what it’s like to have … until now.

Here are 5 clever ways they did it:

Bike = MS? You better believe it. Here we go.

1. This bike looks great on the outside, but the inside tells a different story.

One of the most frustrating parts of MS is that it’s considered a hidden disease. You can look completely normal and healthy on the outside but actually be suffering on the inside.
It’s one of the reasons many people can’t understand what their loved ones are going through. Diagnosing MS is no cakewalk either; its symptoms can be so hard to see that it’s hard to determine whether a person has it or not.
This bike looks sharp and ready to hit the road, just like someone diagnosed with MS. But just wait.

2. Be prepared to feel wobbly.

With MS, the instability is real, and this bike was designed with that in mind. The makers purposely built it with crooked wheels, a misaligned frame, and balky tires to create the effect. It’s incredibly hard to find your balance when you’re riding, and if you took it for a spin, there would be a good chance you’d end up on the asphalt.
People living with MS could relate since they often have problems with walking and feel dizziness.

3. You never know what’s going to happen next.

Symptoms of MS vary widely from person to person, but not knowing what’s going to happen or when it’s going to happen is a common theme.

On the bike, the designers shifted gears, took out teeth on the rear cassette, and used heavy parts to create a jarring, unpredictable feeling when riding.

4. The brakes, seat, and handlebars recreate numbing.

Ever sit in a position too long and your legs go numb? That’s sort of what it’s like for someone living with MS. Only it’s not just your leg. It’s different parts of your body, all the time.

Losing sensation in your feet and hands makes you feel like you have to do everything harder to make it work. To replicate this feeling on the bike, after they used thin handlebar tape with ball bearings wrapped underneath, and made the seat super uncomfortable. Hang on or sit for a while and you’ll go numb.

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Think of Multiple Sclerosis as a Leaking Swimming Pool


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Scientific American - Dr. Stephen Krieger: “Think of Multiple Sclerosis as a Leaking Swimming Pool”

 – June 18, 2015  –– 
For 20 years neurologists have divided multiple sclerosis (MS) into four categories that are supposed to help patients get the right treatments. But a new theory argues that there are no distinctions between these groups, and suggests that MS is a single disease. The idea was developed by Stephen Krieger, MD, a neurologist at Icahn School of Medicine at Mount Sinai, and presented recently at the American Academy of Neurology annual meeting in Washington, D.C.

Learn more

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Vitamin D: not just bone, but also immunity


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Vitamin D: not just bone, but also immunity.

Gatti D, et al. Minerva Med. 2016.


Vitamin D should not be considered only as a vitamin. It has a relevant role in many functions of body regulation, both skeletal and extra skeletal and this makes vitamin D an essential element for a healthy status. This is well explained by a ubiquitous presence of vitamin D receptors. Nowadays extra skeletal effects have a more interesting impact in medical practice. The paracrine and autocrine action of vitamin D has a pivotal role for these effects. The activation of the cellular transcriptional process leads to the expression of beta-defensin and cathelicidin, activating the Th1 pathway, related to innate immunity against bacteria. The action of vitamin D is also related to adaptive immunity with a Th2 response and production of anti-inflammatory cytokines like interleukins 4 and 5, and with Th17 and B-lymphocyte suppression. Vitamin D deficiency could have an unfavorable effect on both healthy and ill subjects. It is well-known that many autoimmune diseases like systemic lupus erythematosus and rheumatoid arthritis are influenced by vitamin D deficiency, and this is especially true for disease activity. Several other pathologies are influenced by the levels of vitamin D, such as diabetes mellitus type 1: an adequate intake of vitamin D can reduce the risk to develop this disease. The same applies to asthma and multiple sclerosis. It is very important to make a point about the deficiency state and their correction, especially in those people at higher risk.


 27441391 [PubMed - as supplied by publisher]

source link

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Decrease in rate of multiple sclerosis-related hospitalizations in Portugal.


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We sought to investigate the rate of multiple sclerosis (MS)-related hospitalizations in Portugal and assess whether there have been temporal changes as described in other countries. Using data from the Portuguese National Discharge Registry, we observed that between 2008 and 2013 the rate of MS-related hospitalizations decreased by 44%, from 15.9/100 person-years (95% confidence interval (CI: 14.9-16.9) in 2008 to 8.9/100 person-years (95% CI: 8.2-9.6) in 2013. The change in hospitalization rates is in accordance with what has been observed in other countries, and coincides with the release of new therapies for MS in Portugal.


 27441085 [PubMed]


Stu's Views - the more being treated correctly with disease modifying therapies, the less need for hospitalization

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Steroid Use Lowers Oxidative Stress in Cerebrospinal Fluid of Progressive MS Patients in Pilot Study


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Photo published for Steroid Use Seen to Ease Oxidative Stress in Progressive MS Patients

 pilot study in patients with progressive multiple sclerosis (MS) found asteroid treatment of benefit by decreasing oxidative stress in the cerebrospinal fluid. The study, “One-time intrathecal triamcinolone acetonide application alters the redox potential in cerebrospinal fluid of progressive multiple sclerosis patients: a pilot study,” was published in the journal Therapeutic Advances in Neurological Disorders.

Cerebrospinal fluid (CSF) is a clear liquid that surrounds the brain and spinal cord, acting like a cushion to protect against injury. Previous studies showed that alterations in CSF composition are found in disease states. For example, CSF in healthy individuals lacks certain chemical radicals, molecules found in high levels in patients with amyotrophic lateral sclerosis (ALS). This increase may be the result of chronic neurodegenerative process.
Our body possesses mechanisms, such as antioxidant responses, to counteract the accumulation of damaging proteins that result from oxidative stress. Antioxidant responses, in fact, are an important mechanism for maintaining homeostasis and viability. Investigating these mechanisms in the cerebrospinal fluid of MS patients may give indications as to the interplay of disease progression, chronic inflammation, and response to treatment.
Researchers studied the effect of one delayed-release steroid application with triamcinolone (TCA) injection on the antioxidant system in the CSF of chronic progressive MS patients. They treated a total of 16 MS patients with 40 mg of TCA, then analyzed the antioxidant potential by measuring the number of proteins positive for an increase in copper absorption.
The research team observed that radicals were present in MS patients’ CSF, while absent in healthy controls. Moreover, they detected an increase in copper absorption, which reflects an elevated content of reduced proteins in the CSF. These results support the beneficial role of TCA by decreasing the generation of damaging reactive oxygen species, the detrimental outcomes of oxidative stress.

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Tuesday, July 19, 2016

• Multiple Sclerosis Development: What is Clinically Isolated Syndrome (CIS)?


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Tuesday, June 21, 2016  
Posted by: Elizabeth Porco 

1. What is Clinically Isolated Syndrome?
Clinically isolated syndrome (CIS) is often a sign of multiple sclerosis and the term refers to the first episode of neurologic symptoms experienced by a patient. It usually lasts at least 24 hours and it is related to an inflammation or loss of the myelin lining of the nerve cells (called demyelination) in the central nervous system. A monofocal episode of clinically isolated syndrome occurs when the patient experiences only one sign or symptom, which is caused by a single lesion.

In comparison, a multifocal episode of clinically isolated syndrome refers to when a patient experiences more than one sign or symptom due to lesions in more than one location. These symptoms may include an attack of optic neuritis accompanied by numbness or tingling in the legs. The National Multiple Sclerosis Society also explains that these episodes are usually not related to fever or infection, and patients often experience a full or partial recovery after it.

2. Who Suffers Clinically Isolated Syndrome?
Similarly to multiple sclerosis, clinically isolated syndrome is twice to three times more likely to occur in women than men while about 70% of patients are an average of 30-years-old. But it can occur to both genders and at any age. It is important to understand that being diagnosed with clinically isolated syndrome is not a synonym to being diagnosed with multiple sclerosis. When physicians detect brain lesions similar to the ones that cause MS in a magnetic resonance imaging (MRI) scan, then there is a 60 to 80% risk of later developing MS. However, it is also possible for a patient with clinically isolated syndrome not to have brain lesions and the risk decreases to 20%.
“According to the 2010 revisions to the diagnostic criteria for MS, the diagnosis of MS can be made when CIS is accompanied by MRI findings (old lesions or scars) that confirm that an earlier episode of damage occurred in a different location in the CNS. As MRI technology becomes more advanced, it is likely that the diagnosis of MS will be made more quickly and there will be fewer people diagnosed with CIS,” explain the society. “An accurate diagnosis at this time is important because people with a high risk of developing MS are encouraged to begin treatment with a disease-modifying therapy in order to delay or prevent a second neurologic episode and, therefore, the onset of MS.”
3. What is the Difference Between Clinically Isolated Syndrome and MS?
There are differences between multiple sclerosis and clinically isolated syndrome. The symptoms of the two conditions are similar, including numbness or tingling in the arms, legs, or face, slurred speech, blurred vision or other eye problems, muscle weakness, vertigo or dizziness, problems with balance or walking, stiffness or muscle spasms, fatigue, pain, poor memory, depression or mood swings, and bladder, bowel, or sexual problems. In addition, MS and CIS both occur when demyelination interferes with the normal function and transportation of nerve impulses from the brain, which causes neurologic symptoms.

However, this does not mean that the two are the same. Clinically isolated syndrome refers to the first episode of symptoms while a patient with multiple sclerosis experiences more than one episode. An MRI of a patient with CIS shows damages in only the area that caused the symptoms, but an MRI of an MS patient demonstrates multiple lesions in different parts of the brain. In addition, if the clinically isolated syndrome is accompanied by specific findings on an MRI that reveals other episodes occurred in the past, then the physicians can confirm the MS diagnosis as stated by the National MS Society referring to the 2010 revisions to the diagnostic criteria for MS.

Learn more about multiple sclerosis here.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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The industry news information and articles are for informational purposes only, and are not intended to represent any trends, partnerships, commitments, or research of the Consortium of MS Centers or any of it's members in any way whatsoever, nor should any party be libel in any way to the reader or to any other person, firm or corporation reading this industry news section. Although the CMSC site includes links providing direct access to other Internet sites, CMSC takes no responsibility for the content or information contained on those other sites, and does not exert any editorial or other control over those other sites. CMSC is providing information and services on the Internet as a benefit and service in furtherance of CMSC's nonprofit and tax-exempt status. CMSC makes no representations about the suitability of this information and these services for any purpose.


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European Medicines Agency (EMA) accepts Merck’s MAA for cladribine tablets in multiple sclerosis


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July 18, 2016

German science and technology major Merck KGaA (MRK: DE) today said that the European Medicines Agency has accepted for review the Marketing Authorization Application (MAA) of the investigational product cladribine tablets for the treatment of relapsing-remitting multiple sclerosis (MS).
"Our submission of the Marketing Authorization Application for Cladribine Tablets demonstrates Merck's continued commitment to fighting the devastating disease of multiple sclerosis," said Luciano Rossetti, head of global R&D for the Biopharma business of Merck, adding: "Although there are multiple therapies available for relapsing-remitting MS, there is still a significant unmet medical need with a focus on efficacy, dosing, durability and safety. 
We believe that Cladribine Tablets, if approved, would have a first-of-its-kind dosing regimen and serve as an important therapeutic option for patients with relapsing-remitting MS."

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Sunday, July 17, 2016

Treating the discomfort of the MS Hug


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Treatment and Therapy for the MS HUG

You’re more likely to trigger an MS hug if you’re feeling stressed, overworked, or very tired. So try to take good care of yourself and avoid a flare.
A few things to try:
  • Apply a warm compress. (Note: Heat may cause more pain in some people.)
  • Drink plenty of water.
  • Eat a healthy diet.
  • Get a massage.
  • Stay rested and get at least 8 hours of sleep each night.
  • Use deep breathing techniques, yoga, and meditation.
  • Wear loose, comfortable clothing.
Medications can also fight the pain of an MS hug. Your doctor may prescribe:
Talk with your health care team about the best mix of treatments for you.

source: webMD

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Why Hugging Is Actually Good for Your Health (Video)


Studies show that hugs have real health benefits

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Turns out, hugs don’t just make you feel good. It might sound a little corny or just something fun to do, but researchers find that giving people an affectionate squeeze is actually good for your health.
“The health benefits of giving and receiving hugs are quite impressive. They have a therapeutic effect on people,” says psychologist Joe Rock, PsyD.
Grandmother embracing granddaughter (7-9)   He says research has found that hugs:

  • Decrease release of cortisol, a stress hormone — University of Miami researchers have published numerous studies backing the benefits of the human touch. They found it can do things like lower the output of the stress hormone cortisol and cause a surge of “feel good” brain chemicals.
  • Lower blood pressure and slow heart rate in stressful situations — A University of North Carolina study found hugs can lower blood pressure and heart rate in premenopausal women
  • Strengthen the immune system — Researchers at Carnegie Mellon University found that people who experience high levels of social support and frequent hugs may be at a decreased risk for getting sick when under stress.

Dr. Rock says if both people are up for it, go ahead and pass on the handshakes and high-fives and give a hug instead. It breaks down some of the barriers that can make us feel detached, he says.


Source: ClevelandClinicHealth

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When My Son turned 7, my disease also turned 7 -- an MS Patient's story


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Love wins. Love and light, racing.

LoveWinsBeing sick is weird. In one way, there isn't a single moment's rest. I am always sick. I am always bogged down with this perching on my conscious or subconscious, at all times. But I am also human and in survival mode without even realizing it; so in many ways there are times I forget I am sick until MS comes around the corner like a bully and punches me in the face.
I grab my nose, still on the cement, wondering what hit me and it's like, "Oy yeah, that's right, I have MS. I really do have it." The blood from my nose is the reminder. Sometimes it takes something BIG to remind me. It's bizarre.
For someone who not only has multiple sclerosis, and has a sis with it and three cousins and writes about it ALL the time (it's my job) it is amazing that I can forget, and yet I do.
I'm sticking with the survival theory. Something in me needs a vacation, or a reason to carry on, so I block it out on some level. 
My boy turned seven (today) and we celebrated over the weekend before my infusion. We left for vacation straight from my infusion. Wait, well we had to replace four tires first. I got my infusion, Tony got the tires, we both got the kids, and we were off.
We are here for AJ's birthday. This was his request. There is no part of AJ that doesn't make me think of MS. I think my Ugly Like Me post says it all:
My baby turns seven and today we celebrate with a bunch of little dudes and water balloons. I can't help but feel happy weepy. AJ turning seven means my disease turns seven as well. They grew up together. It's a very strange feeling, but one that keeps me warm.
I have these little markers now - MS is 7 years old, but look how long his legs are now, his eyelashes, as he sucks his thumb and begs me to let him sleep in my bed for his bday party night. I say okay because it's REALLY special to me (he thinks it's all about him). MS hasn't touched him. It didn't touch me in the way it wanted to either. Look what T and I grew (and our loved ones, it takes a village) over the last seven years of pure fricking chaos lol!
Times I couldn't walk, losing the ability to work, going to work with nothing left in my being but a pump in my arm, hidden under my sweater, and a bucket of fear in my gut. How would I live? How would we live? Paving the way as a writer, no money, just love. Loving hard. Trying to type as fast as the emotions came. Swollen fingers. More love. Daddy being sick. How did we do it?
It's been crazy and look what we still did with almost nothing but a bunch of love. We grow.
We outgrow the darkness and this "badness". No one blamed anyone and we just loved each other and held each other harder. Looking at AJ, celebrating his birthday, I realize nothing evil or bad has been able to rest on me. He is proof. Love grows. Faith grows. The light grows. All at these amazing speeds that are faster than darkness. Amen to SEVEN. It feels like a beautiful number. God bless you my boy.
Playing basketball with you. Pretending to commentate while you win Gold in the Olympics. I can see your little rib cage, porcelain and innocent, breathing hard. I can predict you will have an awesome work ethic as an adult because you already do as a young one at play. You can't work out with a shirt on lol. Watching you climb trees and hearing you call me your best "baller" and the winner of the medal for "best player who has trouble walkin" lol... wakes me up. Makes me run, faster than the darkness. God what a gift you are. I don't believe the sun rises and sets on my children - but man it kind of set and then raised with you. Happy Seventh to you and to Ugly Like Me. We're seven son!
Yes, my posts on the MS page ARE that long. And my love for my boy IS that strong and bound to my disease. MS  felt like the sun was setting, and then this baby started to grow. It was then that MS had no chance. The sun began to rise. It was hard, but I love hard. If I love you - I love you hard. There's no other way.  My husband is the same. 
Since our love is so strong, you'd think I'd be at my best - or on my best - behavior at remembering my limits for AJ's birthday. I know what to sacrifice so I can make certain things happen. You learn as you grow through the course of your disease. I need to really save up my energy to celebrate properly. I did great at his party.
And I just wrote an article for Living Like You about the importance of respecting heat and being honest on vacations, and yet, I didn't listen to MYSELF!!? Why?
I went to the beach after telling my family I couldn't. I had a fever, they almost didn't do the infusion. My nurse questioned it. I didn't feel right and I felt very wrong when I left. So of course I give in and insist on going to the beach lest two of my babies gets caught in an undertow and T must choose between his love...? I make no sense. 
Anyway, I went and bonked. That's the short version. Because I made that really dumb decision, they are at the movies today celebrating my baby's birthday without me. I am on the couch figuratively beating myself up.
Be wise my friends. I know you want to do everything, but you can't. Why? Because you can't. You have MS. You must be smart. That is just the way it is, for life. Don't be me. Not even for your kids because when they really need you, like on their birthday, to blow out another year and waft the smoke away, clearing the air for a new one - you won't be there.
Maybe your problem and limit is something totally different and you have some other adversity to deal with - the moral of the story is you know what you must sacrifice to be well, stick with it. Don't let guilt throw you off. You are doing what you are doing for a reason, because it is SMART. You must put your own oxygen mask on first if you are going to save any of your loved ones. Put your mask on first...
All I want is for my children to remember me and to remember that I stood for so much even when I couldn't stand at all. I don't need them to remember me as a beach babe. That's not what I'm going for. So today I'm wrapped up in a dress that was meant to celebrate, and some really soft blankies, and praying they are enjoying their trip to the movies. And who knows? Maybe I will be better enough for a celebratory dinner.
Continue reading complete MS Patient story by clicking here

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