Can Vitamin D Help MS?

 By Stephanie Watson

You might have heard that vitamin D helps to lower the risk for multiple sclerosis (MS). Or that it helps lessen symptoms in people who already have the disease. Evidence suggests that getting enough of this vitamin might protect against MS by holding back your immune system from attacking your own nerve cells.

But the link between vitamin D and MS isn't proven yet.

The MS-Vitamin D Link

This fat-soluble vitamin acts like a hormone in your body. Vitamin D also helps your immune system work better and to tamp down inflammation.

Those protective actions are important in autoimmune diseases like MS where your body turns against itself. In MS, cells of your immune system attack the coating around nerve fibers, called myelin, and leads to such hallmark symptoms as numbness, weakness, and blurry vision.

Research finds that vitamin D might help repair myelin and guards your nerves from damage.

Can Vitamin D Prevent or Slow MS?

Researchers aren’t sure if vitamin D can keep you from getting MS in the first place. Your body makes most of the vitamin D it needs from sunlight on your skin. People in northern climates like Scotland and Scandinavia are more likely to have MS compared with those who live in much sunnier climates. Studies show that people who get more sunlight and more vitamin D in their diets have a lower risk for MS overall.

There's some evidence that vitamin D might slow MS and make the disease less severe. Studies have found a link between higher vitamin D levels in the blood and less active disease, fewer lesions in their brain and spinal cord, and fewer relapses of symptoms.

In other studies, people with MS who had higher vitamin D levels had less severe disease and disability.

Do I Need More Vitamin D?

It's common for people with MS to be low on this vitamin. It may be hard for you to get outside to get sun often enough. Low vitamin D can also be a side effect of corticosteroids and other MS medications.

Your doctor can run a blood test to check your vitamin D level. You might be able to make up the difference by eating more fatty fish, eggs, and other foods that are high in vitamin D. Or, your doctor might suggest you take a supplement.

It's not clear whether taking a daily vitamin D supplement protects people from getting MS, or slows the disease in those who already have it. Studies suggest it might help, but this hasn't been proven. But since supplements are usually safe to take, it may not hurt to try them.

What Dosage Is Best?

Experts can’t say how much vitamin D is needed to prevent or slow MS. Different medical groups disagree on the ideal amount.

Official recommendations for adults is 400 to 600 international units (IUs) of vitamin D daily.

Ask your doctor what’s right for you. Be careful not to overdo it. Vitamin D helps your body absorb calcium, and you might end up with too much of that mineral. High calcium levels can weaken bones, damage the heart, and increase the risk for kidney stones.

If you already have MS, your doctor can check whether your vitamin D levels are too low. If so, it might make sense for you to take a supplement.

 

Experts Agree on Pathways to MS Cures

 A global collaboration led by the National MS Society is focusing on the most promising research to cure multiple sclerosis for every person affected by the disease. Just as the experience of living with MS is different for every person, every person’s cure for MS may be different.
 
The Pathways to Cures for MS Research Roadmap, which outlines the research needed to reach these cures, has been published in the Multiple Sclerosis Journal.
 
“Curing MS is within our reach,” said Bruce Bebo, Ph.D., Executive Vice President of Research at the National MS Society, and lead author on this paper. “And when we talk about curing MS, we’re talking about curing MS for everyone. The roadmap, now endorsed by over 20 national and international MS organizations, will drive progress by increasing alignment and focus of global resources on high priority research questions.”
 
The research is focused on three distinct — yet overlapping pathways: stopping MS disease activity, restoring function by reversing damage and symptoms and ending MS by preventing new cases.
 
Explore each pathway at pathwaystocures.org
 
In this roadmap, the National MS Society outlines the research needed to: 

• Reduce or eliminate the impact of MS before symptoms appear through early detection.
• Prevent worsening of quality of life and prevent disease progression for each person with MS through precision medicine. 
• Improve tissue repair to reverse or slow MS progression and improve symptoms.
• Implement rehabilitation and symptom management strategies to restore function, reverse MS symptoms and enhance quality of life.
• Prevent MS before it occurs by limiting exposure to MS risk factors in the general population.
• Reduce or eliminate the impact of MS before onset of signs/symptoms by identifying pre-clinical MS in the high-risk population.

 Authors of the paper highlight the need to increase participation of underrepresented groups in MS research. The lack of diversity in MS research is a critical issue limiting progress.

This roadmap is designed to be a starting point for a dialogue among MS organizations. The authors encourage MS research funders and advocates to seek more opportunities to collaborate on research that addresses the areas targeted in the roadmap. The National MS Society has already begun supporting research projects aligned to this to help drive progress in these critical pathways.
 
An initiative this scale requires significant early momentum and leadership. The National MS Society is grateful for the support of our Pathways to Cures Lead Investors – Kathleen and Jim Skinner, Laura Larson, Cathy and Bill Onufrychuk, and an anonymous donor – who have collectively contributed $13 million to bring this roadmap to the world and inspire action. “We are pleased to be at the front of this incredible work and have confidence that the National MS Society has what it takes to provide leadership in the global MS movement,” said Kathleen and Jim Skinner.

“Pathways to Cures for Multiple Sclerosis Research Roadmap,” by B.F. Bebo, M. Allegretta, D. Landsman, K.M. Zackowski, F. Brabazon, W.A. Kostich, T. Coetzee, A. Ng, R.A. Marrie, KR Monk, A. Bar-Or, and C.C. Whitacre on behalf of the National MS Society’s Scientific Advisory Committee and Pathways to Cures Roadmap Task Force, is published in the Multiple Sclerosis Journal.
 
This is an open-access paper and can accessed in full by anyone.

Novel Twins Study Pinpoints Immune System Activity Early in MS Not Accounted for by Genes

 

A new study from the University of Zurich identified immune system patterns in people with MS that may be clues to how MS is triggered. The MS Twin Study – 61 sets of identical twins in which only one twin had MS – is a unique opportunity to study early biological events in MS. Twins have identical genes, so this allows researchers to distinguish other non-genetic differences that may underlie MS.

In this study, researchers used state-of-the-art technologies such as mass cytometry (exploring millions of cells) and machine learning (an automated type of data analysis) to look at the immune profiles of these sets of twins. The results showed key differences in docking sites on immune messenger proteins (cytokines), that affect how immune cells communicate with each other. These differences left people with MS susceptible to greater activation of the cells that drive immune attacks in MS.

Although twins do share early environmental experiences (such as  prenatal influences), these results suggest that a later environmental factor or factors might be at play. Ongoing research by scientists around the world are working on identifying those factors and how they launch the disease.

Read more from the University of Zurich

Read the paper, available from Nature via Open Access

Fatigue

From: WebMD, David Spero, RN

Fatigue is more than feeling tired after a long day.  It’s an ongoing feeling of exhaustion that often does not go away even after a nap.  Fatigue is one of the most common and most disabling symptoms of MS. 

I can testify to the disabling part.  I’ve had weeks when I could barely get out of bed. Others agree. One user of our Facebook page commented, “I have just slept for 3 days with only 1- to 2-hour gaps. So fatigued it’s not funny. Can’t even eat without it draining my energy.”

Causes of MS Fatigue

MS fatigue has many causes.  Inflammation from the immune system’s attack on nerves is one. Nervous system struggling to adjust to myelin damage is another.  MS-related sleep problems or muscle weakness, urinary problems, pain, anxiety, and depression can all cause fatigue.

Fatigue often varies with our environment and behavior. When I get too warm, I can’t even sit up at my desk. After eating a big meal, I just want to fall asleep. If I overdo activities, I might pay for it with hours or days of fatigue.  I can avoid all these attacks by avoiding the triggering behaviors.

How Fatigue Affects Our Lives

MS is often called an invisible illness, and fatigue is the least visible part.  Family or friends might want us to do something, and all we can say is, “I’m not up to it.” They might think we’re making excuses, or they might stop asking, even though at other times we’re good to go.

For years, I noticed that I would get tired after eating, to the point of needing a nap. Then I found out about thermogenesis, the way the body heats up after eating.  I’m one of the many MS patients whose symptoms are worse when I’m warm, so thermogenesis can knock me out. Now I eat smaller meals and don’t have that problem. Protein raises body temperature more than other foods, so I never eat much protein at one time.

Warm air temperatures also exhaust me, like many people with MS.  I stay out of the sun on warm days and carry a little fan with me if I have to go out.  I make sure to stay hydrated, because bad things happen to me if I get warm or dehydrated. I might fall and not be able to get up.

It took me years to figure out that mental fatigue can be as dangerous as physical. I notice that when I’m warm or tired, I’m prone to misjudgments and stupid mistakes. I might try to reach something on a high shelf or trip over a shoe on the floor, things I would never do when not tired.  I might think I can carry something heavy, maybe something I could carry at my best but shouldn’t try when fatigued.  I’ve learned never to make important life decisions while fatigued.

Like most people with MS, I have good days and bad days.  On a good day, there’s a strong temptation to do all the things I couldn’t do on bad days, to live a month of life in a day.  When I do that, I pay with days or weeks of fatigue.  Sometimes we can accept that trade-off for a special occasion, but in general it’s important to keep some energy in reserve.

Physical therapists say it’s crucial to keep moving our bodies. Keeping still all day can add to fatigue.  Sometimes it’s hard to move, but you should try to find some way to exercise lightly.  Stretching and strengthening exercise make it easier for me to move.

There are medications for fatigue that work for many patients. The easiest one is caffeine. A cup of coffee or tea might pick you up. Green tea works for me. I hear from patients that prescription medicines such as Provigil can be great boosters.

At Least It Doesn’t Hurt

The good thing about fatigue is that we can be comfortable with it, as long as we have a good place to sleep.  It doesn’t hurt. Fatigue can be terribly depressing, though, keeping us from doing things we really want to do or need to do. Don’t be afraid to seek help from your doctor or a therapist or to take medicines for depression or anxiety if your MS is taking you there.

Don’t forget to breathe and to relax, meditate, or pray. Tension and stress can wear us out, and being at peace is the least tiring way to live.  For almost everyone, fatigue eventually goes away. For me, as long as I keep cool, it no longer bothers me, and I’m very thankful for that.

 

What’s New in MS Research

The Multiple Sclerosis Association of America (MSAA) is pleased to present its latest edition of “What’s New in MS Research.” This series of online articles is published periodically and features important information on topics ranging from highlights of major international MS conferences and updates on trials with experimental disease-modifying therapies, to new findings on the development of the disease, symptom management, and quality-of-life issues.

This latest edition of “What’s New in MS Research” features trial results from recent studies as well as updates on a variety of MS-related issues. Topics include:

• Positive results for the investigational treatment ublituximab
• The importance of identifying anxiety and depression in early MS
• Intriguing results with cannabis for bladder symptoms with MS
• Assistive devices that show the greatest strides
• And many other vital topics

Please read MSAA’s latest edition of "What’s New in MS Research." We hope you find these updates to be both informative and encouraging, providing help and hope to the entire MS community.

For additional information on the latest advancements in MS research, please also see MSAA’s archived educational webinar What’s New in MS Research: A Look Into the Future of Multiple Sclerosis Treatment — July 2021 featuring neurologist Barry Singer, MD.

 

MS Slide Show

 Interesting slide-show from WebMD -

https://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview?ecd=wnl_spr_070621_remail&ctr=wnl-spr-070621-remail_lead_cta&mb=q80%2F%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3D

 

Does Having MS Mean You Identify As Disabled?

 

 By Tamara K Sellman

In early April, I attended a virtual writers’ conference, immediately drawn to a group of workshops that prioritized the voices, ideas, and practices of writers with some sort of disability.

For instance, I attended a poetry panel discussing disfluent writers. The panelists focused on the challenges of writers with speech disabilities (dystonia, stuttering, dysarthria) caused by any number of conditions (cerebral palsy, deafness, neurological disorders).

Does having MS mean you're disabled?

Overall, these were wonderful workshops, perhaps the best of the entire conference. But in each case, a question was posed that left me wondering: As a person with MS, do I identify as disabled? The short answer? No.

This left me feeling a little out of place in the workshops, like a voyeur instead of a student. Which is weird. I left behind a healthcare career I loved because of MS. The circadian disruption of overnight shiftwork put me on a collision course with relapse that just wasn’t worth the risk.

Yet, I don’t feel like I qualify as disabled. To me, disabled means certain limitations prevent me from performing (forgive the healthcare jargon) “activities of daily living.”

Assessing my disability

After all, I can:

walk (even if sometimes it’s a crooked path)

talk (even if my words aren’t always forthcoming or I trip over them with a strange and unexpected slur)

maintain basic hygiene (even if I might need a nap after)

feed myself (even if annoyingly powerful stretches of hiccups make it hard to eat)

cook (even if I occasionally forget the pan on the stove until it’s too late and I have to start over)

read (even if weird MS fatigue blurs my 20/20 vision or wires cross, making comprehension temporarily impossible)

do basic math (even if cognitive fog obscures my focus and I need my smartphone’s calculator for the simplest computations)

Does that make me disabled? I guess it depends upon who you ask.

What does disabled mean?

The ordinary healthy person may consider a person disabled if they’re impaired in some obvious way. To them, a person in a wheelchair is disabled, but a person with cognitive fog isn’t. (Allow me to acknowledge the very active people in wheelchairs I know who cringe at the term disabled).

However, the ADA National Network defines disabled in strokes both broad and context-specific. You’re regarded as disabled if you’re:

impaired but it doesn’t substantially limit your activities

impaired and it does substantially limit your activities only as a result of the attitudes of others toward you

not impaired, but treated like you are

Meanwhile, your neurologist may use the Expanded Disability Status Scale (EDSS) to gauge your disability status. My EDSS score is 3.0 (or mild to moderate disability). I still don’t identify as disabled.

What does disability mean?

Aside from the negative social connotations attached to it, the term disability is a practical measure, less medical and more legal.³ In its formal application, disability implies an objectively measurable status of ability. It’s used to identify financial needs and justify financial support for those whose impairments prevent them from earning a living or paying for healthcare services or living expenses.

By this definition, I’m definitely not disabled. While I left a job voluntarily because of MS, I pivoted to a sustainable working arrangement and I’m not the household breadwinner.

Disability as a legal status is rather complex. The ADA’s definition of disability differs from the definition needed to apply for Social Security Disability benefits in ways that only a good lawyer can parse out. (The National MS Society can help you decide if you need to hire an attorney or advocate if need be).

I wonder if this is why I don’t identify as disabled. I don’t draw disability benefits, nor do I qualify for them in either scenario.

Disabled, disability - do these words even matter?

On a more existential level, I feel like I’m not disabled even if the ADA and EDSS say I am. I still conduct my days mostly unimpeded by occasional MS-related setbacks. I understand and recognize this privilege. And the last thing I want to do is co-opt the reality, resources, or support for those more clearly impacted by MS.

Yet the unpredictability of MS is not lost on me. Odds are, half of us with relapsing-remitting MS will develop secondary progressive disease within 10 years. Ninety percent of us will transition to SPMS within 25 years. With that transition comes a progressive accumulation of “legal” and “medical” disability. I'm in year 8, post-diagnosis. Might my 3.0 EDSS score suddenly jump to 6.0? Who knows? If that happens, and I can no longer work or afford my living expenses or healthcare bills, then these words, accurate or not, will matter, indeed.