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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Thursday, February 20, 2020

A Love Triangle: Her, Him and MS

Building a successful relationship is hard work. Throw MS into the equation, and it can be even more challenging.

We talked to Kate and Frank, married for over 10 years, to discuss how MS affects their relationship and family life.

How has MS changed you as a person?
 
Kate: As a care-partner, MS has made me more aware that every day is unique, and one bad day does not mean that another will follow. I can say this now, a few years into our new life as an MS family. But when we had a baby and a toddler while learning how to maneuver through a diagnosis, I felt like one bad day would last forever. I try a little harder now to not dwell on one bad day, or even one bad morning. It’s also made me “try” to take better care of myself and recognize when I need a break. We’ve often prioritized Frank’s rest, and that meant that I would shoulder most of the responsibilities of our family and home. It’s taken a few years for all of us to realize that no one person can do everything and that I can only help others if I help myself sometimes first.

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Frank: MS has changed me in almost every way a person can change. It has given me a new approach to life and made me recognize and value the “good times” more than I ever have because there have been plenty of more challenging times. It has also changed me physically since I’ve been exercising more than I ever have.

How has MS changed your marriage?


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Tuesday, February 18, 2020

A Look at Your Multiple Sclerosis Treatment Plan

Your doctor will should want to start treatment right after you’re diagnosed. Learn more about what to consider when you evaluate your MS treatment plan.

Every case of MS is different. For this reason, treatment plans are designed to fit individual needs. Symptoms may come and go, gradually worsen, and sometimes the major symptoms disappear. It’s important to regularly communicate with your doctor, especially when symptoms change.
Treatments focus on slowing the damage caused by the immune system’s attacks on myelin. Once a nerve itself is damaged, however, it can’t be repaired. Other treatment approaches are targeted at providing symptom relief, managing flare-ups, and helping you cope with physical challenges.

Doctors are now encouraging MS patients to take a more active role in selecting their treatment. To do this, you’ll need to become more health literate and consider a variety of factors based on your preferences and overall treatment goals.
As you begin your research, it’s critical to think about the factors that are most important to you. Ask yourself the following questions:
  • What are your treatment goals and expectations?
  • Are you comfortable with giving yourself injections at home?
  • Would you rather get an infusion at a licensed clinic?
  • Could you remember to administer an injection or take oral medication daily, or would you rather take a medication with less frequent dosing?
  • What side effects can you live with? What side effects will be most difficult for you to cope with?
  • Can you manage the need to schedule regular liver and blood tests?
  • Will your travel or work schedule affect your ability to take your medications on time?
  • Will you be able to store your medications safely and out of reach of children if you need to?
  • Are you pregnant or planning to become pregnant?
  • Are you already taking any medications or supplements?
  • Which medications are covered by your particular insurance plan?
Once you’ve answered these questions on your own, openly and honestly discuss all concerns with your doctor.
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Knowing what treatment options are available to you is the first step in making a decision about your MS treatment plan.
Corticosteroid therapy
During MS attacks, the disease actively causes physical symptoms. Your doctor may prescribe a corticosteroid drug during an attack. Corticosteroids are a type of drug that helps reduce inflammation. Examples of corticosteroids include:
  • prednisone (taken by mouth)
  • methylprednisolone (given intravenously)
Disease-modifying drugs
The main goal of treatment is to slow progression of the disease. It’s important to treat MS even during remission, when there are no obvious signs of illness. While MS can’t be cured, it can be managed. Strategies to slow the progression of MS include a number of different drugs. These drugs work in different ways to slow myelin damage. Most are classified as disease-modifying therapies (DMTs). They have been developed specifically to interfere with the immune system’s ability to destroy myelin.
When researching DMTs for MS, it’s important to consider whether they are injected, infused, or taken by mouth.
Injectables include:
  • beta interferons (Avonex, Rebif, Betaseron, Extavia)
  • glatiramer acetate (Copaxone, Glatopa)
  • peginterferon beta-1a (Plegridy)
The following drugs are taken orally as a pill, either once or twice a day:
  • fingolimod (Gilenya)
  • teriflunomide (Aubagio)
  • dimethyl fumarate (Tecfidera)
These DMTs must be given as an infusion at a licensed clinic:
  • natalizumab (Tysabri)
  • alemtuzumab (Lemtrada)
  • ocrelizumab (Ocrevus)

Costs and insurance

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Advancing MS: Coping with Depression, Stress, and Anger


Multiple sclerosis (MS) can profoundly affect your physical health, but it can also take a serious toll on your mental health. Depression, stress, anxiety, and mood swings are all common in people with advancing MS, but it’s possible to manage these emotional changes. Here are some ways to reduce stress, create a healthier mindset, and maintain a better quality of life.

If you have MS, you know that each day brings new challenges and questions. Constant uncertainty and worry can cause almost anyone to feel anxious, stressed, or fearful.
According to the Cleveland Clinic, the most common emotional changes you may experience with MS include:


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.

Your experience of the disease may lead to depression. For example, your changing body and mind may affect how you feel about yourself and your life. The disease itself may also cause depression: As MS attacks the myelin, your nerves may no longer be able to correctly transmit the electrical impulses that affect your mood.
The good news is that depression can be treated. In most cases, doctors prescribe a combination of therapy and antidepressant medication. Talk therapy may be one-on-one with a licensed professional, or your doctor may suggest meeting in group therapy sessions with other people who also have MS.



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Menopause and MS

At some point between their late 40s and early 50s, most women will start to experience the first signs of menopause. During this life transition, estrogen levels in the body decline. Menstrual cycles become unpredictable and eventually stop.
While menopause can bring a welcome respite from your monthly periods, it can also usher in new symptoms like hot flashes, vaginal dryness, and interrupted sleep. For women with multiple sclerosis (MS), it may be hard to tell the difference between symptoms of MS and signs of menopause.
Some women find their MS gets worse once their menstrual cycles end.

If you’re in your late 40s or early 50s and you have MS, it can be hard to tell whether you’re in menopause or you’re experiencing an MS flare. Symptoms of the two conditions can look very similar.
Symptoms common to both menopause and MS include:
  • fatigue
  • bladder problems
  • lack of interest in sex or trouble getting aroused
  • vaginal dryness
  • trouble concentrating
  • sleep problems
  • mood swings
  • depression
If you’re not sure whether you’re entering menopause or your MS worsens, see a gynecologist. A blood test can check levels of estrogen and other hormones to confirm if you’re starting menopause. 

MS and menopause age
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Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS

Feb 17, 2020 - By Ed Tobia




Ocrevus (ocrelizumab) bolted out of the starting gate after it was approved for use in the U.S. about three years ago. However, though its use by people with relapsing forms of multiple sclerosis continues to rise, fewer people with primary progressive MS are taking the medication. These findings from Spherix Global Insights are similar to anecdotal reports that I’ve been reading online by people who are being treated with Ocrevus.


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First-line use of Genentech‘s Ocrevus (ocrelizumab) for patients with multiple sclerosis (MS) has remained stable through 2019 compared to 2018, according to the latest Spherix Global Insights report.
However, the latest edition of “RealWorld Dynamix: DMT New Starts in Multiple Sclerosis (US),” based on 1,006 charts of MS patients prescribed their first disease-modifying therapy (DMT), confirms that Ocrevus prescriptions still lag behind other first-line medications, including Teva‘s Copaxone (glatiramer acetate), Biogen‘s Tecfidera (dimethyl fumarate), Mylan‘s generic glatiramer acetate, and Novartis‘ Gilenya (fingolimod).

In turn, Ocrevus use as treatment starter almost doubled among relapsing-remitting MS (RRMS) patients, while falling by half among primary progressive MS (PPMS) patients, equalling out its overall use.
Click here to read the full story.


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Incontinence in MS Affects Walking Ability, Negatively Impacts Patients’ Quality of Life, Study Finds

FEBRUARY 18, 2020  by Catarina Silva

Urinary incontinence,  associated with poor functioning of the muscles in the pelvic area, was found to have a negative impact on daily activities like walking and overall quality of life in people with multiple sclerosis (MS), a study shows.
Adding pelvic floor muscle training to an MS treatment program may help to improve overall function, the researchers suggest, which could improve patient performance of daily life activities, especially in those with moderate or severe dependence on others.

People with MS can often experience fatigue, numbness and tingling, muscle spasms, walking difficulties, pain, and bowel or bladder problems. Urinary symptoms such as urgency, frequency,  excessive urination at night, called nocturia, dysuria, or pain or discomfort when urinating, and incontinence are indicative of an overactive bladder, and can affect patients’ quality of life considerably.
Studies have indicated that the improvement of the pelvic floor muscles’ function is directly associated with an improvement in gait or balance.
“Pelvic floor musculature is responsible for supporting the pelvic organs, as well as for providing stability to the trunk. The coordinated action of this musculature with the abdominal wall is fundamental to achieving the correct control of body stability in static activities and/or during those that require dynamic postural control, as in the case of gait,” the researchers said.
However, there is not much evidence on whether gait functionality — a person’s ability to walk — can be affected by the status of the pelvic floor musculature in MS patients.
Thus, researchers from the Universidad Antónoma de Madrid, in Spain, sought to evaluate the relationship between pelvic floor function and general functional performance in people with MS, and how the patients’ dependence on others correlated with that.
A total of 43 MS patients — 24 women and 19 men; mean age of 50.3 years — were included in the study. The researchers took into consideration that giving birth can stretch the muscles of the pelvic floor, noting that 11 (25.6%) of the women included in the study had never given birth.
To assess the participants’ pelvic floor musculature functionality, the researchers took into account each individual’s urinary incontinence (UI), fecal incontinence, and constipation history. The team also assessed the patients’ general functional performance and gait using validated clinical tools.
The results showed that urinary incontinence had a significant and negative impact on the patients’ quality of life and general functional performance.
People with more severe urinary incontinence performed worse in the Timed Up and Go (TUG) test — a test to assess walking and balance abilities. In this test, researchers count the time it takes a person, who starts by sitting down on a chair, to rise from that chair, walk three meters, turn around, walk back to the chair, and sit down.
This result suggested that MS patients with urinary incontinence had more trouble walking. Importantly, these patients also were the ones who were more dependent on others — rated as moderate-to-severe dependence — for daily activities.
The participants with greater constipation also had lower quality of life scores, the data showed. In addition, those with more severe fecal incontinence presented a higher degree of urinary incontinence and constipation. Those findings suggest a relation between the variables of pelvic floor function, the researchers said.
Those with MS who reported better quality of life based on their physical abilities were found to be more independent, and had better gait functionality.
“The most significant relationship was obtained between the degree of dependence and gait functionality, showing a strong inverse correlation,” the scientists said.
The data suggest that MS patients’ functional dependence on others for carrying out day-to-day activities has a correlation with the improper workings of the pelvic floor muscles, emphasizing the importance of this musculature in the activities of daily life.
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Monday, February 17, 2020

Advances in oral immunomodulating therapies in relapsing multiple sclerosis.


Abstract

BACKGROUND:

Oral treatment options for disease-modifying therapy in relapsing multiple sclerosis have substantially increased over the past decade with four approved oral compounds now available: fingolimod, dimethyl fumarate, teriflunomide, and cladribine. Although these immunomodulating therapies are all orally administered, and thus convenient for patients, they have different modes of action. These distinct mechanisms of action allow better adaption of treatments according to individual comorbidities and offer different mechanisms of treatment such as inhibition of immune cell trafficking versus immune cell depletion, thereby substantially expanding the available treatment options

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Sunday, February 16, 2020

Does MS Begin Before Symptoms Show?

A recent study identified a biomarker linked to the development of MS. 

Could earlier diagnosis improve future treatments?

by: Trevor Gleason

Everyone I know who has multiple sclerosis (MS) can tell me the date they were diagnosed with the disease. Most have at least a vague recollection of their first symptoms. But when did their MS actually begin?

MS May Begin Before Symptoms Manifest

In a study published in September 2019 in JAMA Neurology, researchers from the Harvard T.H. Chan School of Public Health in Boston and collaborators reviewed blood serum samples from 60 members of the U.S. military who later went on to develop MS. They found increased concentrations of a biomarker called serum neurofilament light chain in those samples relative to a control group. (A biomarker is a measurable substance in the human body.)
Couple this information with previous research, published in The Lancet in April 2017, that was conducted in four Canadian provinces (British Columbia, Saskatchewan, Manitoba, and Nova Scotia). It showed an increased use of health services in the run-up to an MS diagnosis. It seems there is a good argument to be made that we all had MS before we exhibited symptoms.



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The Prodromal Phase of MS Can Last for Years

The medical term used for this period between the beginning of the disease and full-blown clinical presentation is “prodromal.” The researchers involved in this latest study have determined that “multiple sclerosis may have a prodromal phase lasting several years, and neuroaxonal damage [damage to the axon portion of nerve cells] may occur already during this phase.”
In the case of this research, it appears that disease activity of some sort was occurring six years before onset or diagnosis with multiple sclerosis.

Early Identification of MS Could Improve Treatments

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Facilitators, barriers and support needs for staying at work with a chronic condition: a focus group study

Published online 2020 Feb 7

ABSTRACT

Background

Working with a chronic condition can be challenging. Providing support to workers with a chronic condition can help them to stay at work and prevent work-related problems. Workers with a chronic condition who successfully stay at work can provide valuable input for the development of effective supportive interventions to prevent exit from work and facilitate sustainable employment. The aim of this study is to explore the lived experiences of workers with a chronic condition and identify existing barriers, facilitators and possible support needs for staying at work.

Methods

Four focus groups were conducted between August and December 2017 with workers with one or more chronic conditions (n = 30). Participants included employees and (partially) self-employed workers. All focus group data were transcribed verbatim and thematically analyzed.

Results

Disclosure and expressing one’s needs were considered important personal facilitators for staying at work. Environmental facilitators included receiving practical information on working with a chronic condition and social and employer support. Environmental barriers were identified in the work environment, the health care system and service provision, e.g., manager and co-worker’s lack of knowledge about working with a chronic condition, a lack of focus on work in the course of treatment for a chronic condition, dissatisfaction with occupational physician support, and the absence of support for self-employed workers. Provided support should be available to all workers, and be proactive and tailored to the workers’ specific support needs.


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Conclusions
A variety of facilitators, barriers and support needs were identified in various domains. By addressing environmental barriers (e.g., by integrating work in the course of treatment and creating supportive work environments), sustainable employment by workers with a chronic condition can be promoted.
Keywords: Work, Chronic conditions, Support, Barriers and facilitators, Sustainable employment

Background

Working with a chronic condition can be a struggle, since physical or psychological challenges can hamper work performance, potentially resulting in a loss of productivity, extended or frequent sick leave, or job loss []. The number of people in the working population with one or more chronic conditions will continue to rise due to a variety of reasons, amongst others an aging population, unhealthy lifestyles and unfavorable working conditions [, ]. Although a large percentage of the working population with a chronic condition is able to work, work participation rates among these workers lag behind the general population []. Staying at work and prevention of work-related problems among workers with a chronic condition is of significant importance, since return to work after reporting being ill has proven to be difficult [, ].

Participation in the workforce positively influences well being and improves quality of life, as it brings purpose to life and fosters socials contacts [, ]. Relevant factors enabling workers with a chronic condition to stay at work have been well investigated, and demonstrate that in addition to disease-related factors, personal and environmental factors are critical for sustainable employment []. A wide variety of interventions have been developed to facilitate sustainable employment for these workers, and are aimed at the work environment (e.g. facilitating work accommodations) or directed at the individual worker (e.g. increasing empowerment and self-management skills) [].
In addition to self-management and empowerment, self-control is a relevant factor for staying at work. Empowerment, self-management and self-control are all concepts that relate to one’s ability to master a life with a chronic condition and maintain quality of life []. However, some differences between these concepts can be identified. Self-management can, in a broader sense, be defined as the daily management of a chronic condition over the course of the illness, thereby focusing more on managing symptoms, treatments, and the physical and psychosocial consequences of the condition []. Although both empowerment and self-control link to gaining control over decisions and actions, empowerment can be considered either a social, cultural, psychological or political process []. Whereas self-control seems more an internal process, with self-control being defined as ‘the capacity for altering one’s own responses, especially to bring them into line with standards such as ideals, values, morals, and social expectations, and to support the pursuit of long-term goals’ (p.351) []. This also relates to someone’s ability to adapt to new situations [, ].
Proceeding from the new definition of health from Huber, ‘having the ability to adapt and self-manage’ (p. 2) [], having higher levels of self-control at work and the possibility of exerting self-control can improve well being and health. This then facilitates sustainable employment for workers with a chronic condition. Encouraging people with a chronic condition to take control over their lives and their work has been a focal point of the Dutch government and society for a long time []. In a qualitative synthesis on self-control of workers with a chronic condition, we specified the desired behaviors that are important to staying at work and the influence of these behaviors and their interaction with the environment. The study findings also showed the importance of support for exerting self-control [].

Exerting desired self-control behaviors is often not enough to stay at work for workers with a chronic condition. Adequate support is also critical, as stated by the European Chronic Disease Alliance []. Research has already shown the positive effects of a supportive work environments for workers with a chronic condition []. However, other domains, such as occupational health services and medical health care have an important supportive role as well [, ]. National policies can also have an important influence on sustainable employment of workers with a chronic condition []. Effective supportive interventions can help workers with a chronic condition to stay at work and achieve sustainable employment. However, workers’ specific support needs must first be identified. Workers with a chronic condition who are successful in staying at work can provide valuable input for these supportive interventions. Therefore, the aim of this study is to explore the lived experiences of Dutch workers with a chronic condition who are successful in staying at work, and identify facilitating factors, existing barriers and possible support needs for staying at work.

Methods

Study design     CLICK HERE to continue reading this narrative





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Rising prevalence of multiple sclerosis in Saudi Arabia, a descriptive study


Abstract

BACKGROUND:

In 2015, the first nationwide, multicenter Multiple Sclerosis (MS) registry was initiated in the Kingdom of Saudi Arabia (KSA) mainly with an objective to describe current epidemiology, disease patterns, and clinical characteristics of MS in Saudi Arabia. This article aimed to report initial findings of the registry and regional prevalence of MS.

METHOD:

In 2015, a national MS registry was launched in KSA to register all MS patient with confirmed diagnosis according to the 2010 McDonald Criteria. The registry aimed to identify and recruit all healthcare facilities treating MS patients in the Kingdom, and collect data such as demographics, clinical characteristics (disease onset, diagnosis, presentation of symptoms at onset, disease course, relapse rate, and disability measures), family history, and treatments. All the included sites have obtained IRB/EC approvals for participating in the registry. Currently, the registry includes 20 hospitals from different regions across the Kingdom. The Projected prevalence was calculated based on the assumption that the number of diagnosed MS cases in participating hospitals (in each region) is similar to the number of cases in remaining nonparticipant hospitals in the same region.

RESULTS:

As of September 2018, the registry has included 20 hospitals from the different regions across the Kingdom and has collected comprehensive data on 2516 patients from those hospitals, with median age 32 (Range: 11-63) and 66.5% being females. The reported prevalence of MS for those hospitals was estimated to be 7.70/100,000 population and 11.80/100,000 Saudi nationals. Based on the assumption made earlier, we projected the prevalence for each region and for the country as a whole. The overall prevalence of MS at the country level was reported to be 40.40/100,000 total population and 61.95/100,000 Saudi nationals. Around 3 out of every 4 patients (77.5%) were 40 years of age or younger. Female to male ratio was 2:1. The prevalence was higher among females, young and educated individuals across all five regions of Saudi Arabia.

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CONCLUSION:

The prevalence of MS has significantly increased in Saudi Arabia but is still much lower than that in the western and other neighboring countries like Kuwait, Qatar, and the UAE. However, compared to the past rates, Saudi Arabia's projected prevalence of MS through this national study is 40.40/100,000 population, putting the Kingdom above the low risk zone as per Kurtzke classification. The projected prevalence was estimated to be much higher among Saudi nationals (61.95/100,000 Saudi-nationals). The prevalence was higher among female, younger and educated individuals. Further studies are needed to assess the risk factors associated with increased prevalence in Saudi Arabia.

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