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Vitamin D: Giveth to Those Who Needeth.

Vitamin D: Giveth to Those Who Needeth.

Abstract

Severe vitamin D deficiency may cause rickets. While this point is not disputed, the use of vitamin D in the elderly to prevent fractures has been challenged recently by a meta-analysis of 81 RCTs, suggesting that the effects of vitamin D were trivial. As is true for any review of the literature, the interpretation of a meta-analysis can be confounded by the choice of publications to include or exclude. Indeed, the authors excluded RCTs with combined vitamin D and calcium supplementation, included futile studies of very short duration, or studies with high bolus doses known to transiently increase fracture risk. The best available data show that calcium and vitamin D supplementation of elderly subjects can decrease the risk of hip and other non-vertebral fractures, especially in institutionalized subjects or elderly subjects with poor calcium and vitamin D status. Vitamin D deficiency is associated with many chronic diseases. The VIDA and VITAL trials did not show a protective effect on cardiovascular diseases and cancer. 

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The D2d study also did not influence the progress of prediabetes to diabetes. However, the baseline 25OHD concentrations of the majority of the participants of all these trials were essentially normal. Post-hoc analysis of these studies suggest some possibly beneficial health outcomes in vitamin D deficient subjects. A meta-analysis suggested that vitamin D could partly prevent upper respiratory infections. Mendelian randomization studies suggest a causal link between lifelong low vitamin D status and Multiple Sclerosis. A vitamin D supplement in pregnant women may decrease maternal morbidity and improve the health of their offspring. Better-designed studies are needed to answer all outstanding questions. However, based on all available data, it seems that correction of vitamin D and/or calcium deficiency of infants, pregnant women and elderly subjects can improve their health. © 2019 The Authors. JBMR Plus published by Wiley Periodicals, Inc. on behalf of American Society for Bone and Mineral Research.
© 2019 The Authors. JBMR Plus published by Wiley Periodicals, Inc. on behalf of American Society for Bone and Mineral Research.
PMID: 31956848 PMCID: PMC6957985 DOI: 10.1002/jbm4.10232

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Can a diagnosis of multiple sclerosis be made without ruling out neuromyelitis optica spectrum disorder ?

Can a diagnosis of multiple sclerosis be made without ruling out neuromyelitis optica spectrum disorder ?

Abstract

BACKGROUND:

The symptoms of Multiple Sclerosis (MS) can overlap with neuromyelitis optica spectrum disorder (NMOSD). Although testing is available for aquaporin 4 (AQP4) and myelin oligodendrocyte glycoprotein (MOG) antibodies, screening for NMOSD is recommended but not mandatory to establish a diagnosis of MS.

METHODS AND RESULTS:

We queried 319,994 individuals who filed claims for MS and NMOSD in a Truven Health Analytics (THA) database and had at least one year of uninterrupted health insurance coverage. Of this cohort, 2001 (0.62%) were diagnosed as having NMOSD after an initial diagnosis of MS, based on ICD 9/10 codes. Since THA only offers claims-based data, we initiated an individual patient-based data search at our medical center to screen for potential misdiagnoses. We identified 4/54 (7.4%) NMOSD cases that were initially diagnosed as having MS.

CONCLUSIONS:

The results from our small study have significant implications--symptoms, clinical presentation or classic radiological findings perhaps cannot reliably separate MS from NMOSD. If our study findings can be replicated, guidelines to diagnose MS ought to recommend that NMOSD be excluded first despite typical clinical and radiological findings pointing to MS.

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8 Ways MS Is Different for Women

Multiple sclerosis (MS) is considered an autoimmune condition that affects the brain and spinal cord of the central nervous system. The disease affects women more often than men.
According to the National Multiple Sclerosis Society, women may be up to three times more likely than men to get MS. The disease can also cause symptoms specific to women. But women and men share most of the same symptoms of MS.

The MS symptoms that primarily affect women seem to relate to hormone levels.
Some researchers think that having lower levels of testosterone may play a role. Others think fluctuations in female hormones may be a factor.
More research is needed to determine the true causes of these symptom differences.
The main symptoms that affect women more than men include menstrual problems, pregnancy-related symptoms, and menopause issues.

Menstrual problems

Research has shown that some women have increased MS symptoms during their periods. That may be because of a drop in estrogen levels during that time.
symptoms that worsened for study participants included weakness, imbalance, depression, and fatigue.

Pregnancy-related symptoms

Some good news for women with MS: Research has found that MS has no effect on fertility. That means that MS won’t keep you from getting pregnant and giving birth to a healthy child.
In even better news, for most women, MS symptoms actually stabilize or improve during pregnancy, especially during the second and third trimesters. However, it’s common for them to return following delivery.

Menopause

Some research has found that in some women, MS symptoms get worse after menopause. As with menstrual symptoms, this may be due to a drop in estrogen levels caused by menopause.
Studies have shown that hormone replacement therapy (HRT) helps ease these symptoms for postmenopausal women.
However, HRT has also been linked with increased risk of breast cancer, heart disease, and stroke. If you have questions about whether HRT might be helpful for you in managing your MS symptoms after menopause, talk to your doctor.

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In general, MS symptoms are the same for both women and men. But the symptoms vary for everyone depending on the location and severity of nerve damage caused by inflammation.
Some of the most common MS symptoms are listed below.

Muscle symptoms    - click here to continue reading 



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An important clue on the role of diet in MS?

An important clue on the role of diet in MS?
New research from a team of researchers from McGill University, Canada, have made a link between reducing the amount of methionine (an amino acid found in animal products) in a person's diet and development and progression of MS and other disorders.

The very fact that you are reading this likely means that you have heard about and/or are interested in the role of lifestyle interventions as a way of managing MS
Dating back to the pioneering research of Prof. Roy Swank in the 1940’s on the role of fats in MS progression, corroborated by more recent large-scale studies from around the globe, not to mention Prof. Jelinek’s vital work at the NEU, we know that diet and lifestyle play an enormous part in the prevention and the progression of this condition.
Further papers, published in the past two years have begun to unpick the key mechanisms behind diet qualityfasting, obesity and blood lipid levels and their effects on MS relapse rates and disability progression. 
But yet, there is still much work to be done. There is conflicting evidence on which, if any, dietary strategy works best to prevent and treat MS, and doctors generally remain extremely skeptical of lifestyle-based interventions. One of the issues is that the fundamental mechanisms underpinning this disease still evade us, and it can sometimes feel (from the outside at least) like scientists are feeling around for that elusive key in the dark.

Perhaps though, they have now found one? 

A team of researchers from McGill University, Canada, have just published a paper demonstrating a potential pathway for the essential amino acid (meaning it cannot be made by the body, but rather must be consumed in our diet) methionine in the management of MS

Methionine is a key building block of many proteins in the body and is known have a significant role in regulation of the immune system (an important clue!). T-cells (a type of white blood cell known to be involved in the immune attack of myelin in MS) require high levels of the amino acid to activate and to change into the types of cell that then seek out and attack a target.  The theory then would be that reducing consumption will reduce the levels of methionine in the blood available for T-cells, which in turn would reduce the inflammatory response. 

“Ok, makes sense,” I hear you say, "but will it actually work?" 


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People with MS should avoid dairy in their diet

By: Lucy Noble - 

Replacing Dairy Products in your Diet

There are so many dairy-free options available that avoiding dairy doesn't need to mean that you miss out on the food you love.

OMS strongly advises that people with MS avoid dairy in their diet because research shows a high correlation between MS and dairy products, specifically because of particular proteins in cow’s milk. Here you can read an easy list of foods to enjoy and avoid on the OMS recovery program
There are plenty of dairy alternatives to enjoy, and the options keep on growing. 

Dairy-free Milk Options

While soy products offer the highest protein and are better for baking, some people think almond or rice milk taste better on cereal.Check the ingredients as some alternative milks contain oils which are restricted on the OMS Program. 

Here's some pros and cons of some of the dairy-free milk options. 

Almond Milk

✔ Nutty flavour, which can taste nice in cereal or hot chocolate but doesn't work for every recipe.
✔ You can buy sweetened or unsweetened almond milk
✔ Good in coffee and hot drinks.
✔ Low in fat and calories.
X Often more expensive than other milks - watch out as cheaper versions bulk out with thickeners and have low almond content. 
X Can also split when heated. 

Oat Milk

✔ A versatile option.
✔ Sweet.
✔ Lowers cholesterol.
✔ Heats well and doesn't curdle.
✔ Good for smoothies, soups and cereal. 
✔ Good in a cup of tea as it doesn't have a strong flavour and doesn't curdle. 
X Lower in protein 

Rice Milk

✔ Thinner and more watery.
✔ Good in desserts if you want a thickening agent. 
✔ Nice refreshing drink on its own. 
 Higher in sugar 
 Low levels on arsenic - the Food Standards Agency advises against children under four-and-a-half having it at all


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Soy Milk

✔ Widely available option.
✔ Can get sweetened or unsweetened
✔ Best for baking due to higher protein content.
✔ Found to be the more nutritious plant milk. 
X Can be a common allergen. 
X Watch out for added oils in some brands. 
X Can split in hot drinks 
Click here to read about Hemp, Cashew and Hazelnut milks, plus more of this article


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The women of WeAreILLmatic portray a powerful MS community

by Brandie Jefferson

 
Victoria Reese has created a community where women living with MS can learn about the disease, ask questions, give advice and meet people who face similar challenges. Photo by Joseph Gray
Victoria Reese gets things done.
When she was diagnosed with Multiple Sclerosis at 25, a few months after moving to Los Angeles, she returned home to Detroit for a week, “to deal,” she says, then headed back to California.
When working for someone else didn’t allow her to flex her creative and entrepreneurial muscles, she went into business for herself, starting her own brand management company, Victor Group LA.
“If I can’t flex my muscles,” she says, “you’re not going to see me shine.”
And when she didn’t see many people who looked like her in campaigns and organizations that support people with MS, she started her own, launching WeAreILLmatic with the blessing of the music superstar from whose album the campaign’s name is derived—legendary rapper Nas.

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WeAreILLmatic has morphed into a community where young black women living with MS can learn about the disease, ask questions, give advice and meet people who face similar challenges.
“If I know about a problem,” Reese says, “maybe I can help solve it.”
A lack of research
In 2012, Reese had a problem of her own. She visited her primary care physician after experiencing numbness in her legs. “The doctor said, ‘It’s your job. You’re stressed.’” Then came the migraines and facial paralysis. Maybe it was depression, her doctor said. Reese was prescribed antidepressants. The diagnosis, however, just didn’t seem right.
She was referred to a neurologist, and later that same year Reese was diagnosed with MS.
“I started to do my own research and didn’t see many [scholarly] articles about black people with MS and the ones I found were outdated,” she says. Brochures insisted that MS was a disease found most often in young women of northern European descent, and imagery often reflected that. “I thought, ‘Am I that rare?’ I didn’t see anything specifically geared toward me.”      
Continue reading by clicking here

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3 most common vision problems in MS and how to cope

Vision problems are often the first symptoms of Multiple Sclerosis for many people and one of the most common invisible symptoms. Fortunately, many vision problems associated with Multiple Sclerosis are temporary and the prognosis for recovery is good.
However temporary vision problems may be, they are still inconvenient, uncomfortable and downright annoying. Below are some common vision problems for people with Multiple Sclerosis and suggestions for how to cope with them.
Photo courtesy of iStock
Optic neuritis
One of the most common visual problems associated with MS is optic neuritis — inflammation of the optic (vision) nerve. During a flare up, a blurred or dim spot (scotoma) may occur in the center of your visual field, leaving your peripheral vision unaffected. You may experience aching pain with eye movement, blurred vision, dim vision, loss of vision, or dimming or loss of color vision. Optic neuritis usually occurs in only one eye however it is possible for you to experience it in the other eye at some time in the future.
While the effects of optic neuritis are frightening and uncomfortable, in most cases your vision will return once inflammation subsides. Residual symptoms are possible and include dimming or blurring of vision when you are fatigued, stressed or overheated.
How to cope: In most cases, optic neuritis will resolve on its own, but in persistent cases, you may consider talking with your doctor about high doses of glucocorticoids, such as intravenous methylprednisolone or prednisone pills to help accelerate recovery. If you are prone to flare ups, consider taking regular breaks throughout the day to rest your eyes and avoid unnecessary strain.
Photo courtesy of iStock
Diplopia
Diplopia, or double vision, occurs when the nerves that control eye movement are inflamed or damaged. Normally, the muscles work in a coordinated way sending one image of what you’re seeing to your brain, but when diplopia occurs, muscles on one side may be weak from nerve damage making your eye movements no longer coordinated. When this happens you to see two side by side images or one image on top of another.
How to cope: Diplopia can be temporary or persistent and may resolve without treatment. When diplopia is a new symptom, it may be part of a relapse of MS and a brief course of corticosteroids may be helpful. You may also consider patching one eye while driving, reading or completing other short tasks. Special eyeglass lenses known as prism lenses may also be helpful for persistent diplopia as they help align the two images into one.
Photo courtesy of iStock
Nystagmus
Nystagmus, or “dancing eyes,” is an involuntary and uncontrolled movement of the eyes that can impair vision. Movement is usually rapid and can be up and down, side to side or rotating. Nystagmus may occur when you look straight ahead or when you move your eyes up and down or side to side. It can make you feel like the world is moving and cause you to feel dizzy or nauseous.
How to cope: Nystagmus may come and go or may be persistent. At times when your eyes are “dancing”, try tilting your head at an angle as it may help to lessen eye movement. Using magnifying glasses, adequate lighting, large-print reading materials, tinted glasses or a hat can reduce glare and improve vision. Treatment for nystagmus is limited and may include off-label use of medications such as gabapentin.
To learn more about vision problems in MS, visit the Society’s resource page on Vision Problems.
Web Exclusive
January 2020   - article source

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See the latest open-label extension data for Ocrevus


Examine 2 years of controlled and 3+ years of open-label extension efficacy and safety data.











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Ketogenic diet and fasting diet as Nutritional Approaches in Multiple Sclerosis (NAMS): protocol of a randomized controlled study

Ketogenic diet and fasting diet as Nutritional Approaches in Multiple Sclerosis (NAMS): protocol of a randomized controlled study

Abstract

BACKGROUND:

Multiple Sclerosis (MS) is the most common inflammatory disease of the central nervous system in young adults that may lead to progressive disability. Since pharmacological treatments may have substantial side effects, there is a need for complementary treatment options such as specific dietary approaches. Ketone bodies that are produced during fasting diets (FDs) and ketogenic diets (KDs) are an alternative and presumably more efficient energy source for the brain. Studies on mice with experimental autoimmune encephalomyelitis showed beneficial effects of KDs and FDs on disease progression, disability, cognition and inflammatory markers. However, clinical evidence on these diets is scarce. In the clinical study protocol presented here, we investigate whether a KD and a FD are superior to a standard diet (SD) in terms of therapeutic effects and disease progression.

METHODS:

This study is a single-center, randomized, controlled, parallel-group study. One hundred and eleven patients with relapsing-remitting MS with current disease activity and Stable immunomodulatory therapy or no disease-modifying therapy will be randomized to one of three 18-month dietary interventions: a KD with a restricted carbohydrate intake of 20-40 g/day; a FD with a 7-day fast every 6 months and 14-h daily intermittent fasting in between; and a fat-modified SD as recommended by the German Nutrition Society. The primary outcome measure is the number of new T2-weighted MRI lesions after 18 months. Secondary endpoints are safety, changes in relapse rate, disability progression, fatigue, depression, cognition, quality of life, changes of gut microbiome as well as markers of inflammation, oxidative stress and autophagy. Safety and feasibility will also be assessed.

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DISCUSSION:

Preclinical data suggest that a KD and a FD may modulate immunity, reduce disease severity and promote remyelination in the mouse model of MS. However, clinical evidence is lacking. This study is the first clinical study investigating the effects of a KD and a FD on disease progression of MS.

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Plant Based Diet study shows NO significant improvement on brain MRI, relapse rate or disability as assessed by EDSS scores in subjects with RRMS over one year

Plant Based Diet study shows NO significant improvement on brain MRI, relapse rate or disability as assessed by EDSS scores in subjects with RRMS over one year

Low-fat, plant-based diet in Multiple Sclerosis: A randomized controlled trial.

Abstract

BACKGROUND:

The role that dietary interventions can play in Multiple Sclerosis (MS) management is of huge interest amongst patients and researchers but data evaluating this is limited. Possible effects of a very-low-fat, plant-based dietary intervention on MS related progression and disease activity as measured by brain imaging and MS related symptoms have not been evaluated in a randomized-controlled trial. Despite use of disease modifying therapies (DMT), poor quality of life (QOL) in MS patients can be a significant problem with fatigue being one of the common disabling symptoms. Effective treatment options for fatigue remain limited. Emerging evidence suggests diet and vascular risk factors including obesity and hyperlipidemia may influence MS disease progression and improve QOL.

OBJECTIVES:

To evaluate adherence, safety and effects of a very-low-fat, plant-based diet (Diet) on brain MRI, clinical [MS relapses and disability, body mass index (BMI)] and metabolic (blood lipids and insulin) outcomes, QOL [Short Form-36 (SF-36)], and fatigue [Fatigue Severity Scale (FSS) and Modified Fatigue Impact Scale (MFIS)], in relapsing-remitting MS (RRMS).

METHODS:

This was a randomized-controlled, assessor-blinded, one-year long study with 61 participants assigned to either Diet (N=32) or wait-listed (Control, N=29) group.

RESULTS:

The mean age (years) [Control-40.9±8.48; Diet-40.8±8.86] and the mean disease duration (years) [Control -5.3±3.86; Diet-5.33±3.63] were comparable between the two groups. There was a slight difference between the two study groups in the baseline mean expanded disability status scale (EDSS) score [Control-2.22±0.90; Diet-2.72±1.05]. Eight subjects withdrew (Diet, N=6; Control, N=2). Adherence to the study diet based on monthly Food Frequency Questionnaire (FFQ) was excellent with the diet group showing significant difference in the total fat caloric intake compared to the control group [total fat intake/total calories averaged ~15% (Diet) versus ~40% (Control)]. The two groups showed no differences in brain MRI outcomes, number of MS relapses or disability at 12 months. The diet group showed improvements at six months in low-density lipoprotein cholesterol (Δ=-11.99mg/dL; p=0.031), total cholesterol (Δ=-13.18mg/dL; p=0.027) and insulin (Δ=-2.82mg/dL; p=0.0067), mean monthly reductions in BMI (Rate=-1.125kg/m2 per month; p
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The effect of foot reflexology on constipation and quality of life in patients with multiple sclerosis. A randomized controlled trial

The effect of foot reflexology on constipation and quality of life in patients with multiple sclerosis. A randomized controlled trial

Abstract

BACKGROUND:

Constipation is a major problem in most patients with Multiple Sclerosis (MS). The aim of this study was to investigate the effect of foot reflexology on constipation and quality of life in patients with MS.

METHODS:

This study was a randomized controlled trial, in which 63 patients with MS referred to Arak MS Society, Iran were participated (from May to Dec. 2018). In this study participants were selected according to inclusion criteria and randomly divided into intervention (n = 33) and control (n = 30) groups. In the intervention group, foot reflexology was applied twice a week for 6 weeks (each session lasted about 30-40 min). Data were collected using demographic questionnaire, Constipation Assessment Scale (CAS) and Short Form (SF) 36 Quality of Life (QOL) questionnaire. 
Finally, the data were analyzed using SPSS Ver. 16 and descriptive and inferential statistical tests.
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RESULTS:

The results of the study showed that severity of constipation and QOL score were not significant between the two groups before intervention (p > 0.05), but; after intervention, severity of constipation significantly decreased in the reflexology group (p < 0.05). Nevertheless, after intervention, the QOL was improved in the reflexology group compared to the control group but was not significant (p > 0.05).

CONCLUSION:

The results of this study showed that foot reflexology, as an effective intervention can be useful in management of constipation in patients with MS. Therefore, this intervention can be applied as a safe method for the decrease of constipation in MS patients.



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Long term effect of delayed treatment on disability in patients with paediatric onset multiple sclerosis: A prospective Danish cohort study.

Long term effect of delayed treatment on disability in patients with paediatric onset multiple sclerosis: A prospective Danish cohort study.

Abstract

BACKGROUND:

A consensus of early treatment with disease-modifying therapies (DMT) in Multiple Sclerosis (MS) has been reached based on several observational and experimental studies in adults. However, paediatric onset (PO)MS appears phenotypically different from adult onset MS, characterized by increased relapse rate and pronounced radiological activity on MRI. The objective of this study was to investigate the long-term consequences of delayed treatment start in POMS on disability in a real-world, population-based setting.

METHODS:

Based on prospectively collected data from The Danish Multiple Sclerosis Registry, we defined a cohort of MS patients with onset before the age of 18 years, who were born in 1980 or later, and started treatment with a DMT between 1998 and 2018. The POMS cohort was stratified according to treatment start within 2 years of onset (N = 140) or later (N = 151). Annualised relapse rate in each study group was compared using a negative binomial regression; and Cox proportional hazard model was used to estimate hazard ratios (HR) of time to sustained Expanded disability Status Scale (EDSS) score 4, 6-month confirmed EDSS Worsening and 6-month confirmed EDSS improvement, respectively, according to disease duration.

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RESULTS:

The POMS cohort had a total median follow-up time of 7.7 years (interquartile range 4.6-11.6). There was no association between risk of relapses in patients with delayed treatment start compared to earlier treatment start. Patients starting on a DMT later than 2 years after onset had a 2.52-fold increased risk of reaching sustained EDSS 4 compared to those starting within 2 years of onset (HR=2.52, 95% confidence interval (CI)=1.01-6.34). For every year increment from onset to start of first DMT, the risk of reaching sustained EDSS 4 increased by 17% (HR=1.17, 95% CI=1.05-1.30). In line with this, the risk of reaching confirmed EDSS Worsening was increased by 44% compared to those starting earlier, although not statistically significant (HR=1.44, 95% CI=0.95-2.19). Starting on a DMT later was associated with 61% decreased chance of confirmed EDSS improvement compared to those starting earlier (HR=0.39, 95% CI=0.26-0.59). For every year increment from onset to starting DMT, the risk of confirmed EDSS improvement decreased by 10% (HR=0.90, 95% CI=0.84-0.96).

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A new way to estimate neurologic disease prevalence in the United States: Illustrated with MS

A new way to estimate neurologic disease prevalence in the United States: Illustrated with MS

Lorene M. Nelson, PhD, MS, Mitchell T. Wallin, MD, MPH, Ruth Ann Marrie, MD, PhD, W.J. Culpepper, PhD, Annette Langer-Gould, MD, PhD, Jon Campbell, PhD, Stephen Buka, ScD, Helen Tremlett, PhD, Gary Cutter, PhD, Wendy Kaye, PhD, Laurie Wagner, MPH, Nicholas G. Larocca, PhD, and for the United States Multiple Sclerosis Prevalence Workgroup


Abstract

Objective

Considerable gaps exist in knowledge regarding the prevalence of neurologic diseases, such as Multiple Sclerosis (MS), in the United States. Therefore, the MS Prevalence Working Group sought to review and evaluate alternative methods for obtaining a scientifically valid estimate of national MS prevalence in the current health care era.

Methods

We carried out a strengths, weaknesses, opportunities, and threats (SWOT) analysis for 3 approaches to estimate MS prevalence: population-based MS registries, national probability health surveys, and analysis of administrative health claims databases. We reviewed MS prevalence studies conducted in the United States and critically examined possible methods for estimating national MS prevalence.

Results

We developed a new 4-step approach for estimating MS prevalence in the United States. First, identify administrative health claim databases covering publicly and privately insured populations in the United States. Second, develop and validate a highly accurate MS case-finding algorithm that can be standardly applied in all databases. Third, apply a case definition algorithm to estimate MS prevalence in each population. Fourth, combine MS prevalence estimates into a single estimate of US prevalence, weighted according to the number of insured persons in each health insurance segment.

Conclusions:  By addressing methodologic challenges and proposing a new approach for measuring the prevalence of MS in the United States, we hope that our work will benefit scientists who study neurologic and other chronic conditions for which national prevalence estimates do not exist.
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(Originally posted by Stuart)
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A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis


Abstract

Background: When population-based databases are unavailable, nationwide assessments of the disease burden of Multiple Sclerosis (MS) resort to clinical, administrative or convenience-sampled data sources, which may produce results of limited external validity. Our aim was to develop a framework for estimating measures of occurrence of chronic diseases, and more broadly disease burden, that mitigate these limitations and to apply this framework to estimate the prevalence of Multiple Sclerosis (MS) in Switzerland.
Methods: We developed a 7-step framework which implements the combination of several data sources together with a resampling and critical appraisal approach. The framework was applied to estimate the MS prevalence for 2016 in Switzerland, for which four distinct data sources (Swiss MS registry, Swiss national MS treatment registry, MediService database, and Swiss MS cohort study) were combined. Results were reviewed by disease experts and compared to earlier Swiss estimates and current prevalence estimates from other countries.
Results: We estimate that in the year 2016 between 14,650 and 15,700 persons with MS have been living in Switzerland, yielding a period prevalence of 174–187/100,000 inhabitants. Compared to the last estimate in 1986, we detected a substantial increase of MS diagnoses which coincides with a higher number of diagnoses in women below the age of 65.
Conclusions: Internationally, Switzerland is a high-prevalence country for MS, although estimates were somewhat lower than recent evaluations of Northern European countries. In addition, we corroborate previous reports that the prevalence increase coincides with a higher number of MS diagnoses among women. The proposed framework has wide applicability and the potential to place estimates of disease occurrence and burden with imperfect data availability on more solid grounds.

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(Originally posted by Stuart)
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Disability in multiple sclerosis A reference for patients and clinicians

Abstract

Objective:

To create a reference table of disability outcomes in Multiple Sclerosis (MS) that would enable patients to rank their disability relative to others' with similar disease duration and to develop a cost-effective research tool for comparing MS severity across patient populations and time periods.

Methods:

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry collects disability data from patients with MS on a validated, 9-point Patient-Determined disease Steps (PDDS) scale. We compiled the disability Expectancy Table, which displays cumulative frequencies of PDDS scores for each year of disease duration, from 0 to 45 years. We also tabulated disease duration–adjusted mean ranks of PDDS scores, referred to as Patient-derived MS Severity Scores (P-MSSS).

Results:

The cohort consisted of 27,918 NARCOMS enrollees, 72.7% of whom were female and 90.1% of whom were white. Mean age at symptom onset was 30.1 ± 10.1 years, and age at enrollment was 47.1 ± 11.0 years. The disability Expectancy Table and P-MSSS afford a detailed overview of disability outcomes in a large MS cohort over a 45-year period. In the first year of disease, 15% of patients reported need of ambulatory aid, and 4% needed bilateral assistance or worse; after 45 years of disease, 76% of patients required ambulatory aid, and 52% bilateral assistance or worse. Proportion of patients who reported minimal or no interference in daily activities (PDDS ≤ 1) declined from 63% in the first year to 8% after 45 years of disease.

Conclusion:

The disability Expectancy Table allows individual patients to determine how their disability ranks relative to NARCOMS enrollees with the same disease duration. P-MSSS may be used to compare disability across patient populations and to track disease progression in patient cohorts. P-MSSS does not require a formal neurologic examination and may therefore find wide applicability as a practical and cost-effective outcome measure in epidemiologic studies.

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Original author: Stuart
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Social Security Disability Secrets. A psychological impairment can be an allowance

Social Security Disability Secrets. A psychological impairment can be an allowance
Dr. Patricia Farrell        - Jan 15, 2020 · 


The morning arrives like a black slate that hits you on the head, and your stomach is in knots again. Getting up isn’t a choice for you; you can’t move. Your body and your mind are fighting against you at every turn, and it’s been this way for months, even years now. What happened to the person you used to be?
Have you been able to work? Are you getting to your job regularly, and are you completing your tasks, or do you find you can’t? Are you a patient and receiving treatment for a psychological problem that is incapacitating you? Maybe you need to apply for Social Security Disability for mental impairment.
It’s not charity. Every paycheck you receive has money dedicated to pay benefits for anyone determined to be disabled in either a physical or a psychological or an impairment of both.
The process isn’t complicated, but you do need to know what documents must be provided, how the impairments are determined, and what to do if you are denied benefits.
The 3 Things Needed (PPC)
Three things are the primary abilities where benefits will be awarded or denied; pace, persistence, and concentration. What does each mean?
“The evaluation of disability on the basis of mental disorders requires the documentation of a medically determinable impairment(s), consideration of the degree of limitation such impairment(s) may impose on your ability to work, and consideration of whether these limitations have lasted or are expected to last for a continuous period of at least 12 months.”
Pace is simple. You must be able to maintain the speed expected of all employees at that job. If you can’t keep up, you fail pace, and you get one point (not literally) toward benefits.
Persistence means you do need constant supervision to do the job and can’t keep going at it alone. Requiring constant supervision or forgetting how to do a job is another point toward benefits.
Concentration, similarly, is the ability to retain your attention on a task to complete it in a timely fashion. Constant distractibility would, therefore, mean that you do not have the requisite concentration needed for a job.
Who Writes the Reports
Reports of your impairments must include the symptoms you exhibit, and examples of each should be provided. All of the reports are primarily written by a physician/psychiatrist or a licensed psychologist. A social worker may provide a report, but an MD usually co-signs it, or it can be submitted as ancillary evidence.
One sentence must NEVER be used in a report because it will carry absolutely no weight whatsoever in the benefits determination. That sentence is: “The patient is totally unable to work.” This says nothing, and that’s why it is useless to you in your application.
Former bosses, supervisors, or even neighbors can provide supporting statements of your actions and how your psychological disability exhibits itself. These statements are extremely helpful. One thing they provide is what is known as your LOF, level of functioning, or GLOF, global level of functioning.
What the Government Doesn’t Tell You
Read all the online reports and recommendations you want, but there are at least two things you won’t find there. Why? Because there’s a tacit understanding regarding Social Security disability and work in America, and it is intended to aid those over the age of 55.
Age discrimination is a fact of life in the American workplace even though there have been successful lawsuits against it. The Government passed the laws that the Equal Employment Opportunity Commission uses to ferret out and initiate actions in terms of workplace age discrimination.
Now, thanks to the digital age and the evergreen trail it leaves, the evidence against these employers and their illegal actions are becoming easier to collect.
But the US Government and the Social Security Administration is well aware that they are pushing the tide back with a broom. They have, therefore, had a quiet understanding that anyone over the age of 55 may be considered “unemployable” given the prevailing bias and age plays a role as another factor.
Age can be positive when anyone is applying for disability. It’s score one for your side. It is an important factor because your ability to earn a living in terms of the years left before retirement is limited. Someone of 30 has many years left to work before retirement and is less likely to receive benefits than the 55-year-old.
So, it’s not necessarily a nod to bias, but to advancing age in terms of applicants. What else besides age is considered?
Physical strength may be a straightforward rule; how much can you lift consistently? If your disability were medical, you’d be expected to lift at least five pounds regularly and not have a problem.
In the case of psychological impairment, lifting isn’t considered unless you also have a physical illness that might cause a problem, say a pulmonary or cardiac condition. In that case, you’d have two impairments; mental and physical. These applicants are much more likely to receive benefits.
Who’s on Your Side?
Applications, even though they have all the records requested, all the accompanying documents and tests or letters attesting to their inabilities, can sit around for months. Why? The person handling your case may not be able to handle the caseload given to them, or they’re slow, or something has been misplaced. Chalk it up to human error.
But human error won’t stand in your way if you make one phone call that will, miraculously, make your case stand out from all the others. What’s the phone call, and to whom should it be addressed?
The United States Senator that represents your district, has a local office. Call them and ask to speak to someone who handles Social Security disability cases. Then explain that your case seems to be languishing, and you need a bit of help right now. If all goes well, a call and a letter will go out on your behalf.
It’s called “Sensitive Inquiry,” and it has incredible power to help the system get your case moving. When paper files were used (everything is digital now), a red sticker would have been slapped on the front of your case, and it would have been placed on top of any pile on an adjudicator’s desk. Now it’s probably indicated in some other digital fashion or put into a particular digital folder.
Do You Need a disability Lawyer?
Lawyers specializing in disability law are often, I’ve found, more-than-familiar than people at SSD with the nuances of the law. They aren’t required for your application, however, and they do receive a fee.
Many firms cherry-pick the cases they know are slam dunks. Fees are set by law, and the more they get for you (often going back further in years for benefits), means more for them. I neither recommend nor advise against using a specialty law firm, but I do think larger ones may be better.
What If You Are Denied?
Denials happen for many reasons, and one is that the documentation wasn’t sufficient, or it didn’t come from the sources needed. Another reason may be that the consultant who reviewed your case has a bias of some type. It does happen, and it is intolerable.
Apply for a reconsideration, contact your US Senator’s office, or get yourself a major law firm that handles these cases. Never accept a denial without decisive action on your part.
Considering your psychological disability, however, you may not have the energy or motivation. Let others handle it for you.
Now is the time to call in the helpers.   Call them.




Written by: 
Dr. Patricia A. Farrell, Ph.D. Psychologist/Author/Consultant

  PO Box 761, Tenafly, NJ 07670


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Boster's Multiple Sclerosis Vlog: Neuro Anatomy of MS - Focusing on the Central Nervous System

Boster's Multiple Sclerosis Vlog: Neuro Anatomy of MS - Focusing on the Central Nervous System
Aaron Boster MD


In this video I teach you basic Neuroanatomy of the brain and spinal cord, areas commonly impacted by Multiple Sclerosis. Want to better understand the structures of the noggin? Then start watching right now!


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First Direct Comparison of Stem Cells vs Drugs in MS Underway

First Direct Comparison of Stem Cells vs Drugs in MS Underway
Damian McNamara
January 10, 2020

The first trial that will directly compare the safety and efficacy of stem cell transplantation to the best available drugs in the treatment of relapsing multiple sclerosis (MS) has launched.
Investigators are examining whether a one-time transplantation of autologous hematopoietic stem cells is superior to the best available biologic therapies, including natalizumabalemtuzumabocrelizumab, and rituximab in the treatment of RRMS, the most common form of the disease.

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"There is a lot of interest in transplant, but we think it's important to test it more comprehensively before it gains widespread use," principal investigator Jeffrey A. Cohen, MD, of the Mellen Center for Multiple Sclerosis at Cleveland Clinic in Ohio, told Medscape Medical News.
The US Food and Drug Administration (FDA) has approved more than a dozen drugs for the treatment of relapsing forms of MS. These agents vary in efficacy, safety, and cost. In addition, many first- and second-line medications fail to control the disease.

Previous studies suggest autologous hematopoietic stem cell transplantation [AHSCT] can have "very potent efficacy," Cohen said. "The efficacy is also durable — meaning after the transplant sometimes there is complete disease control for many years without any additional therapy."
However, AHSCT has never been formally tested in a head-to-head trial of available third-line drugs, which are effective but can have severe side effects. AHSCT also carries a risk of serious side effects, including death.
"With the transplant, almost all of the risk is at the time of the transplant, and then after the first 6 months, there is very little in terms of safety concerns. Whereas, with the medications, the risk accumulates while the person is on the medication," Cohen said.
Another potential advantage of AHSCT is cost-effectiveness over time, he said. "Transplant is quite expensive, roughly $150,000, but all of the cost is at the time of the transplant." The medications are also expensive, and the cost accumulates with use, Cohen added. "So, after about 2 to 3 years, transplant — if it turns out to be effective — is cost-effective."



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(Originally posted by Stuart)
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High cost of MS medicines forcing patients to take 'drastic actions' - STAT

High cost of MS medicines forcing patients to take 'drastic actions' - STAT
JANUARY 13, 2020



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THE high cost of Multiple Sclerosis treatments has forced 40% of patients to take “drastic actions” and alter their use of the medicines, such as cutting back or skipping dosages altogether. And many report the financial burden is not only hurting their lifestyle, but impairing their ability to save for retirement or college for their children, a new survey found.
For instance, 14% reported they switched to a generic, despite being satisfied with their existing treatment; 12% stopped using their medication for a period of time; 9% skipped or delayed filling a prescription; and 8% took less of their medicine than prescribed, according to the survey by the National Multiple Sclerosis Society.
Meanwhile, the out-of-pocket costs associated with the medicines meant that 25% of the nearly 600 patients who responded to the survey spent less on themselves. In addition, 16% saved less for retirement or college, 11% spent less on groceries, 9% postponed paying other bills, 4% postponed retirement, and 2% took a second job.
“The survey findings continue to tell the real story of what it’s like for people with MS to get the treatment that they need,” said Bari Talente, executive vice president of advocacy for the National Multiple Sclerosis Society, which canvassed patients last summer. “It is these experiences and perspectives that should lead every conversation happening about drug pricing and access.”

The results emerge amid a wider national debate over the cost of medicines in general. Drug pricing has become a key pocketbook issue for many Americans, prompting the Trump administration to devise several plans, none of which have gained traction, and Congress to propose numerous bills. But whether legislation will proceed remains unclear.
The cost of Multiple Sclerosis medicines, however, has been one of the flashpoints, as studies have demonstrated that patients and taxpayers face rising costs.
Last year, a study in Neurology found that Multiple Sclerosis patients paid $15 a month average out-of-pocket costs in 2004, but that jumped to an average of $309 a month by 2016, a 20-fold increase over a 12-year period. Patients with high-deductible plans paid an average of $661 per month compared to $246 a month for those not in a high-deductible plan two years ago.
A recently study in JAMA Neurology found that over a recent 10-year period, rising prices for Multiple Sclerosis drugs caused Medicare spending for the medicines to rise more than 10 times, and Part D beneficiaries saw out-of-pocket costs increase more than sevenfold. Spending per 1,000 beneficiaries by the health program jumped from nearly $7,800 in 2006 to more than $79,400 in 2016.
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