2016 MS-Related Posts on HealthCentral

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2016 MS HealthCentral: A Year in Review

2016 Top MS News Stories

Medical research and new medications dominated the top multiple sclerosis (MS) news stories of 2016. From the 21st Century Cures Act to new drug approvals and increased research funding, people living with MS are encouraged that answers to some of the most vexing disease questions are right around the corner and treatment options continue to expand.

People with MS are also at the center of research with projects that take patient engagement to a new level. For example, iConquerMS, a patient-governed initiative of the Accelerated Cure Project for Multiple Sclerosis, launched the REAL MS (Research Engagement About Life with Multiple Sclerosis) longitudinal study, which intends to answer important questions about the diversity of the experiences of people living with MS and to identify ways to personalize clinical care by identifying factors that affect progression and treatment outcomes. Members of the iConquerMS community can participate by answering online questionnaires about their disease experience and by providing biosamples for molecular analysis. Members can also suggest topics for future research projects.

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Top Multiple Sclerosis News For 2016

Reasons You Might Need Another MRI Scan

Before I was officially diagnosed, I had undergone several of these tests multiple times. For example, I had six MRI scans between the first time my vision “seemed off” in 1994, the time I was temporarily blind in 2000, and when I lost the use of my left hand and arm in 2005. Since my diagnosis I’ve had eight additional MRI scans, each including one to three areas of the central nervous system: brain, cervical spine, or thoracic spine.

Only a few times have I questioned, “Do I really need another MRI right now?”

Top three reasons you might need another MRI

Confirm diagnosis. To diagnose MS, there must be objective evidence that damage to myelin — the fatty substance that covers and protects nerve cells — occurred in two different locations of the central nervous system at two different points in time. The use of gadolinium— a contrast agent injected into a vein during an MRI scan — can help the radiologist distinguish between new “active” lesions and old lesions.

If both active and non-active lesions are seen on scans conducted during a single session, then MS diagnostic criteria may be met. However, it is more likely that repeat MRI scans will be needed to demonstrate that multiple (many) scleroses (scars) have occurred at different points in time and confirm a diagnosis of MS.

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Why Do I Need To Get Another MRI Scan?

Use of Spinal Tap in MS Diagnosis

What is cerebrospinal fluid?

The central nervous system (CNS) is bathed in a clear, colorless liquid, called cerebrospinal fluid (CSF), that cushions and protects the brain and spinal cord. CSF is produced in the ventricles and helps to transfer waste products from the brain to the vascular system. It can also deliver nutrients and hormones to the brain. CSF is composed of cells, water, proteins, sugars, and other vital substances. Examining the fluid can help doctors to identify diseases affecting the central nervous system, including MS.

How is CSF collected?

Cerebrospinal fluid is obtained through a needle that is inserted into the spine during a procedure called lumbar puncture or spinal tap. For this procedure, the patient will usually lay on their side with their back arched (chin and knees tucked toward the chest). An area of skin on the lower back is cleaned before the procedure.

After the area is anesthetized (numbed), a thin and hollow needle is carefully inserted between two lumbar bones into the spinal canal, the space where the CSF circulates.

You may feel slight pressure as the needle is inserted. It’s very important to stay perfectly still during the procedure.

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Do I Need A Spinal Tap To Diagnose MS?

Evoked Potential Testing in MS

Multiple sclerosis (MS) is a complex demyelinating disease of the central nervous system for which there is no single diagnostic test. Common tools used to diagnose MS include the neurological exam, complete medical history, magnetic resonance imaging (MRI), and evoked potential (EP) studies.

What are evoked potentials?

As the brain “talks” to various parts of the body, messages are sent as electrical signals that travel along nerves. Demyelination and neurodegeneration caused by MS can disrupt these electrical signals. Evoked potential studies, also called evoked potentials (EPs), measure signals that travel through specific sensory nerve pathways in response to external stimuli. Those electrical signals are measured through sensors placed on the skin in combination with sophisticated computer programs.

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Evoked Potential Tests: How Are They Used In MS?

Improving End-of-Life Care With MS

Discussions about end-of-life issues are often taboo in our culture — until we are "suddenly" faced with unpleasant realities and challenging decisions. Although many deaths occur unexpectedly, a large number of deaths follow a prolonged period of decline in health due to a progressive disease. This path of decline has been termed "progressive dwindling."

Four broad trajectories of dying in an aging population were identified in a study of Medicare beneficiaries:

• Twenty percent of deaths followed illnesses, such as cancer, characterized by a clear clinical transition from treatable to untreatable progression.
• Twenty percent of deaths were related to progressive long-term conditions, such as COPD, complicated by acute attacks that increase the likelihood of death.
• Twenty percent of deaths were classified as sudden deaths, such as those following a fatal heart attack or accident.
• Forty percent of deaths followed a prolonged period of progressive dwindling associated with conditions such as Alzheimer’s disease or other degenerative conditions.

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Living with Advanced MS: Improving End-of-Life Care

The Process of Being Diagnosed with Multiple Sclerosis

Being diagnosed with multiple sclerosis (MS) is a multi-step process that can take anywhere from days to years. Unfortunately, MS is not a condition where you walk into your primary care doctor’s office because of unusual symptoms, and you walk out of the office with a definitive diagnosis. Reporting your symptoms to your doctor is only the first step.

Step one: Early symptoms and preliminary tests

The neurological exam is the first step in trying to solve th

e mystery as to whether MS might be the cause of your symptoms. The doctor will look for signs to indicate that something may not be functioning as expected within the central nervous system (CNS) that includes the brain, spinal cord, and optic nerves.

To help eliminate potential causes of symptoms, your doctor may order some preliminary blood tests to rule out conditions such as vitamin B12 deficiency, lupus, autoimmune disease, Lyme disease, syphilis, or HIV. If the results come back normal, your doctor may then order an MRI of the brain and/or spinal cord.


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How Long Does It Take To Be Diagnosed With MS?

Surviving the Holidays with MS

The holiday season offers many opportunities to relax, party, shop, spend time with family and friends, travel, eat lots of goodies, and have fun. However, for people living with chronic diseases like multiple sclerosis (MS), the change in routine can take its toll, especially if you go-go-go until you drop.

How can you protect yourself against the consequences of holiday fun?

Remember that MS is a constant companion. Just because there are so many cool things to do during the limited number of days of the holiday season doesn’t mean that you should neglect your own health. Continue to eat nutritious food and respect your body’s need for exercise and rest.

Stay hydrated. Holiday parties frequently offer special drinks, particularly alcoholic beverages. This is not the time to substitute your eight glasses of water each day with eight glasses of wine, beer, or eggnog. To compensate for the dehydrating effects of alcohol, increase your water intake. Alternate a glass of wine with a glass of water to keep those brain cells plumped up and hydrated.

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MS Doesn't Take a Holiday

Urinary Problems and Multiple Sclerosis

Many people with multiple sclerosis (MS) experience urinary problems at some point. Common problems associated with MS, often caused by neurogenic bladder, include frequent urination, urinary urgency and/or hesitancy, urinary incontinence, difficulty urinating, incomplete urination, and recurrent bladder infections. Conservative treatments include adjusting fluid intake, pelvic floor exercises, oral anticholinergic medications, avoidance of certain foods/alcohol, and self-catheterization.

How common are urinary problems in MS?

In a survey of 1,047 people with MS conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS), 966 participants (92 percent) reported experiencing at least one lower urinary tract symptom, the most common being post-void dribbling (64.9 percent), urinary urgency (61.7 percent), and a feeling of incomplete emptying (60.7 percent). Eight hundred twenty-six participants (79 percent) reported having some type of urinary incontinence.

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Do I Need To See A Urologist For MS?

Gratitude for MS Friends Worldwide

I remember when several of us MS bloggers had a chance to meet in person for the first time. Meeting face to face and getting to know one another was a transformative experience; since that initial gathering we’ve become longtime friends, continuing to meet whenever we can and frequently communicating and supporting each other online.

During the past seven years, I have been fortunate to travel throughout the country to advocate for MS patients. I’ve participated on panels and spoken at conferences. I’ve even traveled to Switzerland twice to represent the interests of MS patients.

Now, I am more than a musician. I am a patient advocate, writer, speaker, consultant, educator, and champion. I also am just trying to live the best life I can with these unpredictable diseases.

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Why I Am ThankFul For My MS Friends Around The World

MS Symptoms and MRI Lesions Don't Always Match

One of the most mysterious things about multiple sclerosis (MS) is the wide variety of symptoms and lack of uniformity in disability progression. Although some symptoms can be traced to lesions in specific areas of the central nervous system, including the brain, spine, and optic nerves, there is often a disconnect between relapses, lesions, and disability. Little about MS follows predictable patterns.

In the MS community, I’ve heard lots of questions regarding this apparent disconnect. People with MS are sincerely trying to make sense of the disease and find an explanation for their unpredictable experiences. Here are some common questions and potential explanations.

“I had a relapse, but my annual MRI didn’t show any active lesions. Why not?”

Magnetic resonance imaging (MRI) is helpful in the diagnosis of MS because it can detect inflammation and demyelination that primarily affects white matter in the brain or spinal cord. Active inflammation and new demyelination show up in MRI as gadolinium-enhancing lesions. As inflammation resolves and the body works to repair itself, lesions will no longer enhance. Researchers have indicated that it could take monthly MRI scans to catch these lesions as they come and go.

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Why Don’t My Lesions Match My MS Symptoms?

How To Have An Easier MRI Experience

MRI scanners use strong magnetic fields to generate images. The standard imaging protocol in MS suggests use of a minimum 3 Tesla (3T) "closed machine" for best results. The imaging sequences focus on the white matter and grey matter of the brain and/or spinal cord before and after venous administration of a contrast agent, gadolinium, to enhance certain anatomical features.

Here are some things you need to know to make your MRI experience less stressful and more successful.

Before the MRI

Dress comfortably. Because the MRI scanner is basically a large magnet, you must not wear clothing with lots of metal rivets, buttons, or zippers. To avoid the need to disrobe and put on a hospital gown, I prefer to go to my MRI appointment wearing sweatpants and a comfortable T-shirt. That way, the only clothing I have to remember to take off in the dressing room is my underwire bra. Don’t worry, the technician will double-check that you aren’t wearing anything that would interfere with the MRI.

Remove body jewelry, watch, and wallet. Consider leaving your jewelry at home for safe keeping. You will be asked about metal in the body — such as a pacemaker, cochlear implants, joint replacements, or metal fragments — because in certain circumstances, an MRI can cause damage to the equipment itself or to body tissue when metal is involved. Some metals, such as titanium clips from a breast biopsy, do not pose a problem.


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What It’s Like to Have an MRI Test for MS

What is NEDA?

Since the first disease-modifying therapy (DMT) for multiple sclerosis (MS) was approved by the FDA in 1993, medications for MS have been developed to slow down the disease. Many have been shown in clinical studies to reduce the frequency of relapse and slow the accumulation of permanent disability.

As early as 2010, MS researchers began to suggest that rather than simply slowing down the disease, a clinical goal of therapy could be “freedom from disease activity.” The idea is that measuring the number of people with MS who can achieve freedom from disease activity could become a better gauge to determine therapeutic effectiveness. The concept is now referred to as “no evidence of disease activity,” or NEDA, for short.

What is NEDA?

While the definition of NEDA is evolving, “no evidence of disease activity” means exactly what is sounds like. A person with MS would show no signs of active disease — but this doesn’t mean that old symptoms or disability would disappear. For NEDA to occur, three conditions need to be met, the combination of which is sometimes called NEDA3.

• No clinical relapses or exacerbations
• No Gd-enhancing (active) lesions and/or no new or newly-enlarging T2 lesions
• No change in the neurological exam or confirmed disability progression

Note that these measures are focused primarily on inflammatory disease activity and do not readily capture other disease consequences, such as neurodegeneration. Researchers have suggested the addition of a fourth measure — brain volume loss— to provide a more comprehensive view of disease activity and progression. This new criteria is called NEDA4.

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'No Evidence of Disease Activity' in MS: What is NEDA, Anyway?

Does Smoking Increase MS Risk?

Does smoking play a role in multiple sclerosis (MS)? Several studies have investigated possible connections between tobacco smoke and MS. A 2015 brochure written by Tiffani Stroup and published by the National MS Society (NMSS), presents a summary of information gathered from many of these research studies. Here’s an excerpt:

“Together, these findings demonstrate the many negative effects of cigarette smoking in people with MS. Not only are smokers at higher risk of developing multiple sclerosis, but they are also more likely to: 1) be diagnosed with the progressive form of the disease; 2) have higher disability scores, increased disease activity on MRI and more significant symptoms; 3) develop antibodies that make some of the multiple sclerosis medicines ineffective; and 4) transition to the secondary progressive form of the disease faster than ex-smokers or never smokers.

The brochure continues: “Passive (second-hand) smoke exposure has also been associated with an increased risk of developing multiple sclerosis in adults and children. The good news is that stopping smoking can help to reduce these negative effects.”

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Is There Really a Connection Between Smoking and MS?

What is Aggressive Onset MS?

Multiple sclerosis is a disease which affects people in many different ways. For some, it can be relatively mild, while for others it can be very aggressive and cause high levels of disability in a short period of time. The more aggressive presentation of MS has been called “malignant MS” or “highly active MS” or simply “aggressive MS.” This type of MS would be different from advanced MS, in that disability accumulates very quickly, up to Expanded Disability Status Scale (EDSS) score 6.0, within the first few years after diagnosis. Patients with aggressive onset MS, or AOMS, may have smaller windows of opportunity for receiving the most effective treatment to slow down the disease.

Studying aggressive onset MS (AOMS)

To date, there are no established criteria or biomarkers by which neurologists can easily identify cases of aggressive MS. To learn more about this type of MS, researchers in New York reviewed the published literature to carefully select a set of criteria with early clinical features and MRI findings that doctors can use to identify these cases. They published their findings in August 2016 in the Journal of Neuropsychiatric Disease and Treatment. The criteria included: 1) two or more relapses in the year after disease onset and two or more gadolinium-enhancing lesions on brain MRI scans; or 2) one relapse if it results in sustained disability (at least EDSS 3.0) along with two or more gadolinium-enhancing lesions.

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Aggressive MS Needs Early Aggressive Treatment

High-Dose Biotin and Progressive MS

For years, research efforts into effective treatments for primary progressive multiple sclerosis (PPMS) have been frustrating. While we have 14 FDA-approved disease-modifying therapies (DMTs) for relapsing MS, there currently are no therapies approved for PPMS. Fortunately, it looks like a new therapy — ocrelizumab (Ocrevus), which is very similar to rituximab (Rituxan) — should be approved in December 2016 for the treatment of relapsing forms of MS and PPMS.

Research does not end there. On September 15, 2016, the International Progressive MS Alliance awarded €12.6 million ($13.7 million in U.S. dollars as of mid-October 2016) to fund three multi-year global projects to accelerate the pace of progressive MS research. Additionally, promising results from a small randomized double-blind placebo-controlled study of high-dose biotin (also known as MD1003) in the treatment of progressive MS were published in the Multiple Sclerosis Journal in September 2016.

What is biotin?

Biotin (or vitamin H) is a water-soluble B-complex vitamin that is found naturally in many foods. It acts as an essential coenzyme involved in energy metabolism and fatty acids synthesis. Data from a small open-label pilot study and the randomized trial referenced above suggest that high doses of biotin have some impact on disease progression and permanent disability in patients with progressive MS.

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High-dose Biotin as Treatment for Progressive Multiple Sclerosis

Lifestyle Choices Associated With Less MS Disability

How do lifestyle, medication, and demographics affect people with multiple sclerosis? Answers to this question are the focus of international, internet-based research conducted by George Jelinek, M.D., and his team from the University of Melbourne, Australia.

In 2012, the research team collected baseline data for the Health Outcomes and Lifestyle Interventions in a Sample of people with Multiple Sclerosis (HOLISM) study. Participants from 57 countries were recruited through social media leveraging MS blogs, forums, Facebook, Twitter, international MS societies, and the primary researcher’s website, https://overcomingms.org. The HOLISM study provides a snapshot of current lifestyle and risk-modifying behaviors of a large international group of people with MS, as well as an ongoing platform for analyzing the association between these factors and disease progression.

Researchers have been analyzing the data collected in 2012 from approximately 3,000 people living with MS and publishing the results in individual articles. Those published to date are listed below. The original research plan includes a 5-year follow-up survey which would allow for comparison of longitudinal data. Updates on the status of that survey are unavailable. This latest article focuses on the associations of lifestyle, medication, and socio-demographic factors with disability in 2,469 people with any form of MS.

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Lifestyle Choices Associated With Less MS Disability and Fewer Relapses

Does Your Neurologist Talk About Exercise?

Exercise is an important part of multiple sclerosis management. Exercise not only helps cardiovascular health, it can increase strength and flexibility, reduce spasticity and fatigue, and improve self-efficacy and mental well-being. Recent research has shown that exercise also can promote remyelination and brain repair in mouse studies.

Exercise: It does a body good

What constitutes exercise may differ dramatically from one person with MS to another. What is an appropriate exercise for me may be dangerous and highly inappropriate for you, or might be sorely insufficient and too easy for someone else with greater physical abilities than either of us. Just as people with MS are unique with our symptoms and disease course, our individual needs for exercise and/or rehabilitation can vary considerably as well. There is no one-size-fits-all when it comes to physical activity.

Does your doctor talk to you about exercise?

I asked a few MS friends if their doctors ever discussed exercise recommendations. The responses ranged from “I would just like for my neurologist to give me the hope of doing exercise but he's already written it off and condemned me to a chair!” to “I don't really expect any from a neuro, but I do expect my neuro to recommend me to a PT/OT that can with help me with that.”

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Should Doctors Talk More About Exercise to MS Patients?

What To Know About Zinbryta

Disease-modifying therapies (DMTs) are important tools in the fight against multiple sclerosis. To date, the U.S. Food and Drug Administration (FDA) has approved 14 DMTs: 13 therapies for the treatment of relapsing forms of MS, some of which are also approved for clinically isolated syndrome; and one therapy, Novantrone, for the treatment of “worsening MS;” however, Novantrone is no longer customarily used in the United States.

In May 2016, daclizumab (under the brand name, Zinbryta) was approved by the FDA as the fourteenth DMT option for people diagnosed with MS in the U.S. In July 2016, Zinbryta was approved for use in Europe. The FDA suggests that because of its safety profile, the use of Zinbryta should generally be reserved for patients who have had an inadequate response to two or more drugs indicated for the treatment of MS.


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What You Need to Know About the Latest MS Drug Zinbryta

What is Benign MS?

Multiple sclerosis is a disease of the central nervous system. There are traditionally four forms of the disease that include relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), primary progressive MS (PPMS), and progressive relapsing MS (PRMS). A 2014 update to the description of the subtypes of MS added clinically isolated syndrome (CIS) to the list and removed PRMS. An unofficial subtype of multiple sclerosis is benign MS.

What is benign MS?

Although there is no universally agreed upon definition of benign MS (BMS), the term is typically used to describe a disease course where patients experience little disease progression and minimal accumulation of disability decades after developing the disease. Benign MS is a retrospective diagnosis that can only be made 10 years or more after disease onset.

Your neurologist may look back on how MS has affected you and determine that your version of MS has been “benign” or fairly mild. Disability in MS is measured by the Expanded Disability Status Scale (EDSS) that is scored from 0 (no disability) to 10 (death). An EDSS 2.0 score represents mild disability in one functional system, such as decreased sensation in all four limbs, and EDSS 3.0 represents mild disability in several functional systems or moderate disability in one system while the patient is still able to walk unassisted.

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What is Benign MS and How Is It Treated?

Ultra Low-Fat Vegan Diet Doesn't Slow Down MS

People who are newly diagnosed with MS are often interested in learning as much as possible about what they can do NOW to fight the disease. In addition to learning about MS and discussing disease-modifying therapy (DMT) with your neurologist, I frequently recommend that people focus on staying as healthy as possible through nutrition and exercise.

In addition to fighting MS with medication, patients may turn to diet, exercise, and alternative medicine to push back on the disease. Several studies have connected exercise to positive patient outcomes including reduced fatigue and improved cognitive function. But research exploring the effects of diet and nutrition on MS is less clear cut. A pioneer on the subject, Roy Swank, M.D., published several papers prior to 1991 discussing the benefits of a low-fat diet in MS patients before DMT were available. Modern day MS diet proponents may also observe subjective benefits of diet for MS patients, but research is difficult and expensive to conduct.

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Low-fat Vegan Diet May Reduce Fatigue But Doesn’t Slow Down MS

Foster a 'Can Do' Spirit to Fight MS

Do you believe you have the power and skills to complete tasks and accomplish specific goals? If so, you have a high level of self-efficacy. People with high self-efficacy may be said to have a “can do” spirit.

Self-efficacy can be influenced by past experience, peer pressure, and physiological factors. Self-efficacy can also influence behavioral choices (e.g., avoiding tasks when belief in our ability is low, or choosing to undertake tasks when self-efficacy is high), affect motivation (e.g., people with high self-efficacy are more likely to persist in order to accomplish a task, whereas people with low self-efficacy might be discouraged and give up sooner), and affect thought patterns and responses (e.g., low self-efficacy can make you think a task is more difficult than it actually is, which leads to poor planning and increased stress).

Multiple sclerosis is a disease that can erode one's independence and lead to lower self-efficacy. MS is often associated with significant reduction in physical activity, which also correlates with lower self-efficacy. Conversely, higher self-efficacy has a positive effect on physical activity and correlates with higher health-related quality of life (HRQoL) and lower rates of depression.

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Build Confidence and Foster a ‘Can Do’ Spirit to Fight MS

Should You See A Specialist For Your MS?

Previous generations of people diagnosed with multiple sclerosis didn’t have many treatment options. The phrase ‘diagnose and adios’ became popular in the MS community for a reason. If new neurologic events occurred, neurologists could offer steroids for relapses but that was about it. Some patients were told not to exercise or have children for fears of making the disease worse, presumptions we now know are incorrect.

In the care of MS, we’ve come a long way. It is now generally accepted that MS is a chronic but treatable disease that requires long-term care from a neurologist. Due to improved diagnostic criteria, better understanding of the disease mechanisms, and multiple disease-modifying therapies, the treatment landscape for MS has become rich and complicated.

Effective disease management that improves health outcomes is vital to maximizing quality of life for MS patients worldwide. As such, it is important for patients to be able to access specialist care from healthcare professionals who have experience and training in addressing the specific needs of MS patients and their caregivers.

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Should You See An MS Specialist?

What factors do people with MS say help them as they get older?

The more we learn about healthy aging, the better equipped we will be to focus on important aspects of life now that can make a difference in our quality of life later. The number of people with MS who are older adults is increasing. That’s probably due to improved longevity and more effective treatments. But that means it’s more important to learn from their experiences and discover what they think helps them to live well and stay more independent.

Researchers in Canada—where MS is more prevalent—wanted to know what factors older people living with MS thought are most significant in contributing to healthy aging. So they asked 683 adults living with MS (78 percent female) who were older than 55 years (average age 64) and living with MS symptoms for more than 20 years. The majority of the participants in the study lived in their own home (96 percent) with a spouse or partner (71 percent) and required some assistance for activities of daily living.

At the end of the survey, participants were asked: “From your point of view, what are the most important things that help you live long and healthy with MS?”

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Healthy Aging With Multiple Sclerosis

The Flu Vaccine and MS

Protecting yourself from illness is important, especially when you live with multiple sclerosis.

Being ill when you have MS can mess with your body. When you have an infection, fever, or become overheated, it can cause a temporary pseudo-exacerbation. Until your body temperature returns to normal or the infection is resolved, MS symptoms can wreak havoc with your ability to function, much in the same way a relapse would.

One way to protect yourself from getting sick this winter is to get the annual flu vaccine. It contains inactivated (killed) influenza viruses that are specifically chosen each season to protect against three or four of the most highly anticipated flu viruses. Once you get a flu shot, it takes about two weeks for the body to develop antibodies to be able to fight the viruses.

The flu vaccine can also come in a nasal spray form, the flu mist, which contains live attenuated viruses. People with MS, people who are immunosuppressed, children with asthma, and pregnant women are some of those who should NOT receive the nasal vaccine. Further, for the 2016-2017 season, the Center for Disease Prevention and Control (CDC) recommends that no one use the flu mist due to concerns with its effectiveness.

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Annual Flu Vaccine, MS, and MS Medications

Multiple Sclerosis and Sleep Problems

People living with multiple sclerosis are at increased risk of sleep disturbances, which can lead to daytime sleepiness and fatigue. The most common sleep problems associated with MS include insomnia, obstructive sleep apnea (OSA), and restless legs syndrome (RLS). Other sleep problems may include periodic limb movement disorder (PLMD), rapid eye movement (REM) sleep behavior disorder (RBD) and narcolepsy.

Fatigue vs. sleepiness

Fatigue and sleepiness are similar, but may have different causes. If you start the day energized, but lose physical or mental energy over time, it’s probably MS-related fatigue. If symptoms are worse during sedentary, monotonous activities, rather than during extended physical or cognitive activity, the excessive sleepiness (hypersomnolence) is more likely caused by sleep disturbances and needs to be assessed with an overnight sleep study.

Insomnia

Insomnia occurs when you have trouble falling asleep or staying asleep. It can contribute to symptoms of fatigue, impaired concentration or memory, mood disturbances, excessive daytime sleepiness, behavioral problems, reduced motivation or energy, impaired social, family, academic, or occupational performance, proneness to errors, and concerns or dissatisfaction with sleep.

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The Many Ways MS Can Mess With Your Sleep

Adaptive Yoga For MS

Many people with multiple sclerosis take advantage of complementary and alternative medicine. Mind-body techniques are especially popular, particularly yoga. But some people with MS may worry that they cannot keep up with a regular yoga class due to MS limitations.

The beauty of yoga lies in its adaptability to fit each person’s needs. You do not need to be able to twist yourself into a pretzel or stand on one foot, eyes closed, and reach to the stars. You just need to “start where you are.” Yoga is not the goal; it is a process that helps to integrate mind, body, and spirit.

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Benefits of Adaptive Yoga for Multiple Sclerosis

Diet Similar To Fasting Might Help MS

What we eat can make a huge difference in how we feel; what we don’t eat can also have an impact. Although there is no one multiple sclerosis (MS) diet, there are several different approaches to eating that might make a difference with the disease.

Researching how diet affects health is not an easy task and often starts with studies involving animals. Researchers will often use a mouse model of MS called experimental autoimmune encephalomyelitis (EAE) to test how different interventions affect the immune system or disease symptoms. In the MS community, we often joke that it is the mice that get all the cures. Translating their cures into human treatments has been a huge challenge.

Researchers at the University of Southern California investigating the role of diet interventions in MS found that a fasting-mimicking diet (FMD) promotes neuro-regeneration, reduces autoimmunity, and reduces symptoms in a mouse model of MS. They found that the FMD reduced the severity of clinical symptoms in all study mice and completely reversed symptoms in 20 percent of the animals. The improvements seen with FMD were associated with reduced levels of pro-inflammatory cytokines, increased corticosterone levels, and increased production of oligodendrocyte cells that encouraged remyelination (Choi et al, 2016).

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Diet That Mimics Fasting May Reduce MS Symptoms

How to Improve Walking With MS

One of the most visible consequences of multiple sclerosis is an impaired ability to walk. At some point during the course of the disease, the majority of people with MS (up to 87 percent) experience walking limitations. That shocking figure comes from a 2008 survey of more than 2,000 people living with MS commissioned by Acorda Therapeutics and the Multiple Sclerosis Association of America.

Walking difficulties can be affected by muscle weakness (in legs and trunk), spasticity, loss of coordination, balance problems, sensory deficits, pain, visual loss, cognitive deficits, and fatigue. The resultant abnormal gait patterns and decreased mobility can lead to comorbidities such as osteoporosis, musculoskeletal pain, osteoarthritis, cardiovascular and respiratory deconditioning, and increased risk of falls.

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Six Ways To Improve Walking Speed and Performance

Caregiver Fatigue and MS

Caregiving is a special skill that some choose to develop professionally, but one that others learn out of necessity.

According to the Caregiver Action Network, there are 65 million family caregivers across the country. Nearly one-third of the adult population is providing an average of 20 hours of care per week. That’s an extensive, unpaid job, one that’s vital to protecting the health and safety of our loved ones, especially those with multiple sclerosis.

MS is a progressive disease that can cause significant physical disability and manifests with a broad range of symptoms, including weakness, sensory disturbance, bowel or bladder dysfunction, impaired mobility, and vision loss. As the abilities of a person living with MS gradually decline, caregivers must perform important functions to help those with MS stay more independent. Informal caregivers such as family members, friends, and neighbors help make it possible for people with MS to remain in their homes even as the need for personal assistance increases and physical and cognitive independence declines.

Caregivers have an important job, but may become highly burdened. Family caregiving, mostly unpaid, can cause emotional distress, isolation, feelings of abandonment, and economic difficulties. In contrast, however, caregiving can also strengthen relationships, improve coping skills, and encourage feelings of pride and accomplishment. Becoming a caregiver teaches you a lot about yourself and empathy.


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The Impact of Caregiver Fatigue in MS

Comparing the Effects of Steroids with MS Symptoms

During relapses in multiple sclerosis, new or worsening symptoms exacerbate (or flare) as the disease ramps up. To qualify as a relapse, the symptoms must last for more than 24-48 hours (opinions differ among neurologists) and the attack must not occur within 30 days of a previous relapse, otherwise it might be considered a continuation of the first.

These problems are one of the hallmarks of relapsing forms of MS: relapsing-remitting MS, secondary progressive MS with relapses, and progressive-relapsing MS. Due to recommended changes in the words used to describe forms of MS and types of disease activity, you may see different terms used.

To qualify as a true relapse, there must not be another reason that symptoms might be flaring. Heat, illness, infection, fever, and severe exhaustion must first be ruled out, as they are among the causes of a pseudoexacerbation.

The treatment for an MS relapse is often a 3-day or 5-day course of high-dose (1 gram) intravenous (IV) corticosteroids such as Solu-Medrol or Decadron, followed by an oral taper of steroids such as prednisone.

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Are the Side-Effects of Steroids Almost as Bad as MS Symptoms?

Managing Sensory Overload with MS

What do large parties, grocery stores, and movie theaters have in common? Lots and lots of sensory stimuli delivering a potentially overwhelming combination of sounds, smells, lights, colors, and motion in a crowded space.

Sometimes sensory input, such as sounds, can cause significant pain, physical response, confusion, and fatigue in persons living with multiple sclerosis. Symptoms such as hyperacusis and stimulus-sensitive myoclonus (add link to new post) can become quite debilitating. Too much sensory input may also interfere with a person’s ability to interact with others and to function socially or professionally.

Sensory overload is not something that just affects children with autism or attention deficit hyperactivity disorder (ADHD). It can affect those of us living with MS.

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12 Ways to Manage Sensory Overload

Hyperacusis and Multiple Sclerosis

Multiple sclerosis is associated with malfunctioning nerves in the central nervous system (CNS) caused by demyelination. That means the protective lining around your nerves has become damaged or is missing. Myelin helps nerve impulses travel along the CNS between the brain and body. Sometimes, a lack of myelin causes a misfiring of nerve impulses which might interrupt, subdue, or amplify the messages. It’s the misfirings that contribute to symptoms.

What is hyperacusis?

Hyperacusis is commonly defined as a heightened, abnormal sensitivity or intolerance to ordinary, everyday sounds. Some 8-15 percent of the general population suffers from it. “Normal” sounds for you might be perceived as outrageously LOUD and painful to me. The effects of hyperacusis can range from mild to severe. But not all hyperacusis is the same; a recent literature review suggests there are four forms:

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Why Do I Startle So Easily and Sounds Are Too Loud?

Pseudoatrophy and Multiple Sclerosis

Multiple sclerosis is a demyelinating disease of the central nervous system that is often marked by changes in the brain. Using magnetic resonance imaging (MRI), these changes can appear as lesions, “black holes," or brain atrophy.

What are lesions?

In MS, the fatty, protective covering that surrounds nerves, called myelin, becomes damaged due to inflammation in the central nervous system. The result of this inflammatory damage is demyelination. Lesions are the hardened areas (scars) or plaques where myelin has been damaged. Multiple sclerosis literally means "many scars."

Where inflammation damages the blood-brain barrier, lesions can develop. This inflammation and active lesions appear on MRI scans as white spots when gadolinium, a contrast agent, is injected into a vein beforehand. Lesions can also affect the spinal cord or optic nerves.

What are black holes?

When so much of the protective myelin has been damaged that nerves die, the resulting lesions appear as dark spots on MRI scan. These dark spots are often referred to as “black holes.” Although the body can work hard to repair myelin, once the nerves have died they do not grow back. The damage is permanent.

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Brain Atrophy, Pseudoatrophy, and Multiple Sclerosis

Can a Brain Tumor Be Confused With MS?

Diagnosing multiple sclerosis is not as easy as undergoing an MRI scan and having a neurologist watch you walk; instead, it is a challenging process, and neurologists want to get it right. One thing that was considered even before I underwent MRI scans in 2000 for optic neuritis was the possibility of a brain tumor. It turned out not to be a tumor, but I wasn’t diagnosed with MS at the time, either. Over the years, several patients have reported similar “not a brain tumor” diagnoses when telling their MS stories.

Can a brain tumor be confused with MS?

An extremely rare form of multiple sclerosis, called tumefactive MS, involves brain lesions that look like tumors. These lesions are usually larger and more aggressive than normal MS lesions. Treatment usually begins with high-dose intravenous corticosteroids (e.g., Solumedrol) followed by disease-modifying therapies for MS and symptomatic treatments.

In a recent study, researchers investigated the unusual concurrence of MS and brain tumors. They point out, however, that it is difficult to determine whether brain tumors in MS are more common than in the general population. People with MS undergo more MRI scans than healthy individuals, thus the diagnosis of brain tumors in MS patients may appear to be more frequent (Platone et al. 2015). But not all cancer-related brain tumors appear large; they can also look like multi-focal enhancing white matter lesions which are the hallmark of MS.

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Lymphoma May Be Confused For Multiple Sclerosis

When Is It Time For Nursing Care?

People living with more advanced MS develop special needs.

Family and friends often provide care and become a major source of assistance for people with MS as their disease advances and disability progresses. In addition to emotional support, caregivers may begin to informally provide long-term care services at home. When needs become too great at home, families begin to consider long-term care in a nursing home.

What is long-term care?

Long-term care covers a range of services and supports that help to meet personal care needs.

Most long-term care is not medical care, but rather help with the basic personal activities of daily living (ADL), such as bathing, dressing, eating, or using the toilet. Family members may also help with instrumental ADLs such as transportation, shopping, meal preparation, housework, managing money, taking medication, or responding to emergency alerts such as fire alarms.

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When Should You Consider Nursing Home Care?

Managing MS During and After Pregnancy

Disease activity during pregnancy

For some women with MS, pregnancy brings about fewer MS symptoms. This may be due to the body’s immune system being more tolerant of the growing human being inside. Clinical and MRI disease activity related to MS are suppressed, particularly during the third trimester. This connection has led to research using hormones such as estriol to treat MS. So far the studies have been small, showing modest benefit.

Disease-modifying therapy during pregnancy

Women with MS are encouraged to stop disease-modifying therapy (DMT) once they become pregnant, if they had not already stopped DMT use when trying to get pregnant. Women with MS who become pregnant while on a DMT should consider participating in a formal pregnancy registry such as the one sponsored by MothertoBaby.org or those hosted by pharmaceutical companies. Several small studies have reported outcomes related to the use of DMTs during pregnancy, particularly during the first trimester, but information is still limited. Data suggest that glatiramer acetate or interferon beta are safe to use. However, each person with MS needs to make personal decisions regarding DMT use and pregnancy in collaboration with her doctor.

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Modern MS Management During and After Pregnancy

Benefits of Pilates on Quality of Life with MS

Symptoms of MS can include fatigue, weakness, impaired posture, and difficulties with movement and cognition. Symptomatic treatment of MS often combines medication, rehabilitation, exercise, nutrition, or mind-body techniques and complementary medicine.

Exercise is a frequently used treatment that has demonstrated significant improvements in muscle strength, exercise tolerance, and mobility in studies of people with MS. But the majority of these studies have focused on strengthening and aerobic exercises, not on exercises that improve core stability. Yoga and clinical Pilates are two mind-body techniques that do focus on core stability.

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Clinical Pilates Improves Cognitive Function and Quality of Life in People with MS

Misdiagnosis and Multiple Sclerosis

Diagnosing multiple sclerosis is not a simple process, and even experienced doctors make mistakes. Even with improved testing tools and more detailed diagnostic criteria, MS misdiagnosis remains an important problem in neurology, with significant consequences.

Misdiagnosis is too common in MS

Rates of MS misdiagnosis range from 6 percent to 35 percent, based on a number of studies published between 1985 and 2005. There are several possible diseases that a person misdiagnosed with MS might have instead. Two of the most common missed diagnoses in these studies were psychiatric disease (23-27 percent) and migraine (9-10 percent).

In a more recent study (Solomon 2012), 95.1 percent of neurologists surveyed (n=122) had evaluated a patient, previously diagnosed with MS by another provider, who they “strongly felt did NOT in fact have MS.” Within the preceding year 39.7 percent of respondents estimated that they had seen three to five such patients. More than one-third (34.4 percent) reported seeing six or more misdiagnosed patients in the last year, including 20 (17.2 percent) respondents who had seen 10 or more such patients.

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Problems with Misdiagnosis of MS: But I Have ALL the Symptoms of MS!!

Family Planning and Multiple Sclerosis

Multiple sclerosis is often diagnosed in young adults during their prime reproductive years. So pregnancy and parenthood are common concerns for many people living with multiple sclerosis. Contrary to what physicians thought decades ago, pregnancy does not make multiple sclerosis worse. With so many treatment options, family planning is an important part of disease management for men and women with MS.

Multiple sclerosis has no significant impact on the ability to conceive, on the development of the fetus, or the mother’s ability to carry to term. MS doesn’t seem to increase the risk of spontaneous abortions, stillbirth, cesarean delivery, premature birth, or birth defects. However, a recent study suggests that MS patients may have decreased ovarian reserve, a term used to describe the ovary’s capacity to produce egg cells that can be fertilized.

Paternal MS

A recent study of men with MS who fathered children found that paternal MS had no impact on birth weight or premature birth. Researchers also determined that factors such as disease duration and disability did not impact birth outcomes. Data regarding semen quality is limited, but one study reports lower total sperm counts, reduced sperm motility, and increased percentage of abnormally formed sperm in men with MS.

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Family Planning in the Modern Day of MS

What is Advanced Multiple Sclerosis?

Rosalind Kalb of the National MS Society stated at the Consortium of MS Centers conference in June 2016 that there is no clear definition of what constitutes advanced MS. The term is used quite broadly. It may be used to describe the person with MS who is dependent upon others for assistance with personal care and daily activities, who is rarely able to leave the home, and who cannot be left alone for extended periods of time. However, the term advanced MS may also refer to a person who has more progressive disability, symptoms that interfere with activities of daily living, or safety issues that require adaptations to maintain independence and mobility.

Advanced MS does not mean 'home-bound'

My dear friend, Karen, is a person living with primary progressive MS for over 20 years who arguably has “advanced MS” but who is fiercely independent and able to stay engaged in the community with the help of specialty equipment and accommodations. She uses a rather large 350-pound electric chair, drives her own van with hand controls, and until recently was employed full time in a medical office.

Karen traveled to Chicago this summer and I accompanied her as a caregiver to be available to help manage luggage and extra equipment, make sure that she could get in and out of bed safely, and to give her the peace of mind that if anything went awry she would not have to face it alone. I’m sure that I helped Karen tremendously but one thing I learned from watching her interact with others on this trip was that a smile, patience, and clear communication had the power to overcome many hurdles that arose along the way.

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What Is Advanced MS?

The Gut and Multiple Sclerosis

Inside the digestive system is a rainforest of rich microbiota that help to process nutrients, protect us from infection, maintain protective barriers in the gut, trigger the immune system, and even communicate with the brain.

To get a sense of how bacteria does this, first understand that microbes are everywhere. They live in the soil, in water, on our skin, and inside our bodies. These tiny organisms outnumber our own cells by a ratio of 10 to one and research suggests that the human genome has incorporated bits of DNA from the genes of various microbes. There are an estimated 500,000 metabolites in our blood derived from the microbiome.

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The Gut and MS: Why What You Eat Matters

How Men and Women Experience MS Differently

Men and women experience multiple sclerosis in different ways. While MS is not a "female disease," more than three out of four people with MS are women. Not surprisingly, few studies have been published about the management of MS in men or the experiences of men with MS. Recently I attended an entire session at the 30th Annual Consortium of MS Centers Conference held at National Harbor, Maryland, June 1-4, 2016, dedicated to men and MS.

Men tend to have a more progressive onset of disease, more rapid accumulation of disability, and need help with mobility more quickly than women do. Men with MS typically have fewer relapses, but the relapses they do have are more likely to affect motor function and less likely to be sensory in nature. However, men and women tend to reach disability milestones at overall similar ages. How MS affects the brain differs in men versus women. For example, men experience a greater ratio of T2 Gd-enhancing lesions that evolve into T1 hypointense lesions (i.e., “black holes”).

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Men Experience MS Differently Than Women Do

Is Stem Cell Therapy "The MS Cure?"

Stem cell therapy continues to show promise as an effective treatment for more advanced multiple sclerosis, albeit not without risk. Results from studies that have been ongoing for many years are slowly being published, including data from a Canadian study of immunoablation (wiping out the immune system with chemotherapy) and autologous haemopoietic stem-cell transplantation (transplantation of a patient's own bone marrow-derived stem cells), also known as IA-HSCT, for aggressive multiple sclerosis.

The Canadian study — a small phase II trial led by Drs. Mark Freedman and Harold Atkins — enrolled 24 patients with aggressive MS who underwent the chemotherapy/stem cell therapy procedure. Results demonstrated that IA-HSCT was effective in halting disease progression (no relapses and no new gadolinium-enhancing or T2 lesions) in about 67 percent of participants in the three years post-treatment. Sixteen patients experienced no increase in disability, seven patients experienced continued increase in disability, and one patient died from treatment-related complications. To date, surviving participants have been followed for four to 13 years, and 35 percent have experienced reduced disability.

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Is Stem Cell Therapy a ‘Cure’ for MS?

Age-Related Changes in MS

As people with MS live longer, they’re now also faced with the consequences of normal aging. It can be difficult, though, to know if the cause of worsening symptoms in older MS patients are due to conditions commonly brought on by aging such as Alzheimer’s disease, Parkinson’s disease, an intensified degenerative/inflammatory process directly related to MS progression, or a combination of these factors. Here are some of the more common complications of age and MS.

Difficulties with mobility

As people age, mobility becomes more of a concern. Last year it was reported that from 2004 and 2012, the number of American adults over the age of 65 who used canes and other mobility devices increased from 16 to 24 percent.

Although MS patients of any age may require mobility aids, statistics have shown that the aging process itself may further contribute to the growing need for them. For instance, a study of 2156 people with MS, found that older persons over the age of 65 with MS had a significantly higher rate of disability compared to their younger counterparts. It also found that a higher percentage of older adults required a cane and other types of bilateral support to walk 25 feet. A higher percentage also needed a wheelchair, scooter, or were bedridden.

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Disease Comorbidity and Age-Related Changes in MS

Children at Higher Risk of Psychiatric Disorders When Parents With MS Have Depression

Pregnancy and new parenthood are risk factors for depression, affecting 15 - 20 percent of mothers in the first year following delivery and 10 percent of fathers. Peripartum depression — depression, anxiety, or mood disorders in the month before childbirth and year following delivery — greatly affects quality of life, may impact other members of the family, and can influence the mother-child bonding that is crucial for psychological health.

Depression and anxiety are about twice as common in people with multiple sclerosis than those without MS. Men and women with MS are equally at risk for developing peripartum depression in rates higher than individuals without MS. Researchers in British Columbia conducted a study to examine the rates of peripartum depression in parents with MS and to determine the impact of parental depression on the development of psychiatric disorders in their children.


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Depression in Parents with MS May Lead to Psychiatric Disorders in Children

Aging and Multiple Sclerosis

People with MS have been living longer than they did 40-50 years ago, especially since the introduction of disease-modifying medications. Researchers have noted that life expectancy and average age of persons with MS have increased significantly during the past two decades, but remains on average seven years less than the general population. Studies have shown that increased mortality rates are often related to comorbidities, such as diabetes, coronary heart disease, depression, lung disease, or infectious diseases. (Marrie 2015)

As people with MS live longer, they begin to face more of the conditions traditionally associated with aging or advanced aged. Sometimes it can be difficult to distinguish between concerns that are related to MS and those that may simply be related to aging. In a recent literature review, researchers discuss several factors related to aging and MS, including common comorbidities, that can help healthcare professionals distinguish between the effects of normal aging, relentless MS disease progression, a new disease common in aging, or some combination of these (Sanai et al, 2015).


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The Effect of Aging and Multiple Sclerosis

Copay Assistance Programs, and More, Available to MS Patients

Copay assistance programs can be blessings for patients who cannot afford to pay for prescribed medications despite insurance coverage. Frequently, drug manufacturers are able to provide financial help directly to patients in need. To access manufacturer-sponsored programs, visit the brand website for the MS drug which you have been prescribed.

For patients who do not quality for manufacturer programs (perhaps due to insurance coverage through government programs such as Medicare), the following non-profit organizations offer additional help paying for medications. Some of these programs even offer financial help with insurance premiums and transportation costs to obtain treatment.

In general, to participate in these programs, the patient must have valid medical insurance that covers the prescribed medication, which in turn must be included on the program formulary; and the patient must meet annual household income criteria established by each program.

• Good Days
• The Assistance Fund
• Healthwell Foundation
• Patient Access Network
• Patient Services, Inc
• Caring Voices Coalition
• Patient Advocate Foundation

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7 Assistance Programs MS Patients Need to Know