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Thursday, December 15, 2016

For MS Patients - Tell us your concern(s) for Access to Care (Treatments, Therapy, etc)


                                                                  
  

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KEY Question regarding an MS PATIENT ISSUE:  

( Please respond ) -- 

WHAT IS YOUR BIGGEST Concern or Issue that you have now or that you see for the future, concerning ACCESS TO CARE for your MS --- 


REPLY PLEASE using the comments link showing below, and then ask others with MS to visit this page to reply as well - 


LEAVE Your Comment to this posting please
Responses needed with good reason and needed to help make a difference


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Wednesday, December 14, 2016

Addressing the High Risk of Falls in People with Multiple Sclerosis


                                                                  
  
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Intervention programs targeting key modifiable risk factors are vital to preventing falls in people with multiple sclerosis (MS). Research in this field is relatively new, however, and much more work is needed to explore, improve and substantiate prevention strategies.1,2Because falls in MS patients may lead to potentially life-changing consequences, from physical injury to a fear of falling, diminished physical activity, and social isolation,1 they are “a major problem that requires focused attention,” says Marcia Finlayson, PhD, OT Reg (Ont), OTR, Director of the School of Rehabilitation Therapy, Queen’s University, Kingston, Ontario, Canada. And “since falls are multifactorial, solutions need to be multifactorial, as well,” she adds.

A significant health concern
“Over the last decade, researchers have gained an improved understanding of fall risk factors in persons with MS,” says Jacob J. Sosnoff, PhD, Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign, Urbana, IL. “Nearly 50 risk factors...have been found to be associated with falls in persons with MS.”
These fall-related variables in MS include, for example, impaired balance, difficulty dual tasking, inconsistent use of mobility devices, reduced strength and sensation, and changes in vision, notes Dr. Finlayson. “One of the most predictive factors for a future fall is having a history of a previous fall in the past year.”
As a result of the numerous mobility challenges and other disease-related issues, people with MS fall at high rates and experience falls substantially more often than community-dwelling older adults, the most studied group in fall prevention programs, Dr. Finlayson says. To illustrate, approximately 33% of older adults fall during a 12-month period, whereas fall rates among people with MS range from 40% over 1 to 2 months to 70% over 12 months, according to both retrospective and prospective reports, she adds.

Strides in intervention research
Read complete article here




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Tuesday, December 13, 2016

Accessing video-archived MS information is easy


                                                                  
  


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Obese people need to pay attention to the risk of multiple sclerosis


                                                                  
  

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Individuals who are obese in early adulthood face a heightened risk of developing multiple sclerosis (MS), according to recent research published in PLOS Medicine.
This result provides further confirmation of previous observational studies that had suggested the existence of such a link.
MS is a progressive neurological disorder which can lead to disability and death, involving damage to the myelin which surrounds nerves in the spinal cord and brain. Causes of the disease are poorly understood, although immune-mediated mechanisms are likely.
Currently available treatments have only modest effects on the disease and its symptoms, which underlines the importance of identifying preventive measures.
The team, carried out a Mendelian randomization study in large population datasets to investigate whether genetically determined obesity was associated with increased risk of MS.
Such a study decreases the probability that exposures linked to obesity, such as smoking, can explain the findings.
They found that a change in body mass index (BMI) from overweight to obese (equivalent to an average size adult woman increasing in weight from 150 to 180 pounds) was associated with an increase of about 40% in the risk of MS.
“These findings may carry important public health implications because of the high prevalence of obesity in many countries” note the authors in their research article; “[because the] median age of onset for MS is 28-31 years.”




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An MS patient's story - My 24-Year Journey to an MS Diagnosis and a New Beginning


                                                                  
  

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By Mike Russell, Special to Everyday Health
The road to a multiple sclerosis diagnosis can be a short one or — as mine was — a very long 24 years between first experiencing symptoms and being diagnosed.
My MS journey began around the mid-1980s. Growing up, I was the ultimate jock; I participated in football, basketball, and baseball and later in life, snow skiing, waterskiing, and surfing.
As my symptoms advanced, I attributed my loss of rhythm, balance, and vision to growing older. I would adjust to the change, and my adjustment would then become my standard.
In 2004, however, it became apparent that what I was experiencing was not natural aging. I finally decided it was time to seek medical help and determine what was happening.

From One Specialist to Another

My first stop was a visit to my family doctor. Based on my description of my symptoms, my doctor identified several tests and specialists that could likely help to determine the cause of my lightheadedness, blurry vision, balance issues, and strange feeling in both legs.
My next stop was to see an ENT physician (otolarygologist), who conducted four tests: electronystagmography, which detects involuntary eye movements; posturography, to assess my balance; rotary chair testing, to evaluate my vestibular system (which includes the inner ear, brain stem, and cerebellum); and electrocochleography, which records how the cochlea — a part of the inner ear — responds to sound.
The results of these tests showed there were issues with both my eyes and ears, leading to referrals to  physical therapy and to an ophthalmologist.
The ophthalmologist noticed damage to my optic nerve in my left eye. He suspected I’d had optic neuritis at some point in the past. He also thought the cause of my periods of blurry vision might be Uhthoff’s syndrome, the temporary worsening of symptoms related to MS when the body becomes overheated.
In spite of possibly having two conditions related to MS — namely optic neuritis and Uhthoff’s syndrome — I was not diagnosed with MS at that time.
Over the next three years, I visited several more specialists, including a neurologist who discovered neuropathy (nerve damage) in both legs. However, a year of vitamin B12 injections did not help, and several brain MRIs indicated “all clear.”
After four years, I began to do my own research to understand why my symptoms were so hard to diagnose, and I quickly had an answer: Just one search for lightheadedness on the Mayo Clinic website turned up 1380 possible causes! “Wow,” I thought, “they might never figure this out.”

Read complete article here





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Monday, December 12, 2016

Lower Oxygen in Brain’s Gray Matter Linked to More Impairment in Mouse Study


                                                                  
  

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Lower Oxygen in Brain’s Gray Matter Linked to More Impairment in Mouse Study
The less oxygen that a mouse with multiple sclerosis (MS) has in the gray matter of its brain, the more mental and physical deterioration it is likely to have, a new study suggests.
The study confirms previous research indicating a connection between low oxygen levels in a mouse’s gray matter and the development of MS. Published in the journal Plos One, the study is titled, “Gray Matter Hypoxia in the Brain of the Experimental Autoimmune Encephalomyelitis Model of Multiple Sclerosis.”
These findings also offer additional evidence that MS can affect not only white matter, where the brain’s myelin-covered nerve fibers are located, but also gray matter. Many scientists once thought that MS affected only white matter.

Read complete article here 






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Sunday, December 11, 2016

An Effective, Easy to Understand talk, Helping you to communicate with Your Healthcare Team -


                                                                  
  

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Date- 11.29.16 - from Tampa Florida
Guest Speaker: Matthew Baker, MD of Neurology


At 3:09 -- Dr. Baker has a new way of describing and pointing-out ways to communicate your needs to your healthcare provider. Plus: Organizational Concepts Including; Taking an Active Role, Journaling, Making Informed Choices, and Recognizing and Recording Changes/Symptoms


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MS Views and News
Providing educational information, resources and services for those affected by MS
MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis





Ladies this is for you: Women's health Issues- Sexuality and Intimacy in MS - A Graphic Description


                                                                  
  

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Women's health Issues, sexuality and intimacy in MS - A graphic description -
Presenter: Constance (Connie) Easterling, RN, MSN, ANP, MSCN

Topics: Sexual Issues, Intimacy, Family planning, Role Adaptions -


MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis

Women's Health Issues in Multiple Sclerosis - Part 1


                                                                  
  

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Published on Dec 11, 2016
November 16, 2016 -
from Altamonte Springs, Fl.

Our first speaker for this program is: Scott L. Gold, MD Neurology, from Melbourne, FL Topics: Symptom Management, Bladder issues, Nutrition and Access to medications –

Following Dr. Gold please see our second speaker in video:
Women's health Issues, sexuality and intimacy in MS - A graphic description - Found here: https://youtu.be/UiVrXWPhw5U


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Power the Research to Conquer MS


                                                                  
  

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Through iConquerMS™, you shape and drive a new kind of research in the fight against multiple sclerosis.

See the iConquerMS website to learn more



Join With Others As Never Before

As part of the iConquerMS™ community, your data combined with the data of thousands of others helps researchers uncover critical patterns and insights.



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Updated information on Progressive MS


                                                                  
  

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WATCH THE VIDEO:

The Next Frontier: Understanding and Treating Progressive MS

A panel of experts discusses challenges and potential in progressive MS research during this hour-long webcast.

Finding Solutions for Progressive MS

In progressive stages of MS, there are few or no relapses, and few or no recovery or remission periods when major symptoms improve.  Some of the burning questions that are being addressed through research include:
• What factors influence the transition from relapsing stages of MS to progressive MS?
• Can the disease-modifying therapies prevent, delay, or slow long-term MS progression?
• What new therapies will stop progressive MS?
• What causes degeneration of nerve fibers—thought to be the cause of long-term disability—and how can that be stopped or reversed?

Driving treatment solutions

A common question is, “Why aren’t there more treatments for progressive MS?”  Virtually every therapy approved for relapsing MS has been tested, or is now in testing, in people with progressive forms of the disease. Clinical trials involving people with relapsing MS often rely on counting relapses or doing MRI scans to detect immune activity. Progression is less easily measured, and usually happens over long periods of time. This important difference makes it hard to quickly detect whether a therapy is impacting progression, and thus has made therapy development for progressive MS a challenge.
But the landscape is changing, thanks in part to National MS Society investments and collaborations:
  • The experimental therapy ocrelizumab moderately slowed the progression of disability compared to placebo in 732 people with primary progressive MS – the first large-scale clinical trial to show positive results in primary progressive MS; the company plans to seek marketing approval from the FDA in 2016.
  • The Society is funding several clinical trials of nervous system-protecting approaches:
    • Lipoic acid, an antioxidant that may help block nerve fiber damage in MS.
    • Determining whether a biomarker can monitor the benefits of oxcarbazepine (epilepsy therapy) in people with secondary-progressive MS
    • The MS-SMART trial is testing three therapies that may have nerve-protecting properties in secondary-progressive MS (with the MS Society of the U.K.)
    • A unique collaboration between NIH's NeuroNEXT Network and MediciNova for a trial (SPRINT-MS) of ibudilast, an oral anti-inflammatory agent, in 250 people with progressive forms of MS.
  • Large clinical trials are ongoing in progressive MS, including tests of masitinib, laquinimod, and siponimod.
  • The International Progressive MS Alliance – an ever-expanding alliance of organizations from around the world – is funding research studies in 11 countries as part of a €22 million global effort to end progressive MS.  www.EndProgressiveMS.org
  • Studies investigating complementary and non-traditional therapies to combat specific symptoms, such as whether leg cycling can improve spasticity.
  • More than 30 studies investigating benefits of novel programs of exercise, rehabilitation and other non-pharmaceutical strategies to enhance wellness, and address other symptoms that can interfere with quality of life. The Society has launched a wellness initiative to develop strategies for increasing high-quality research and programming that will help people with MS make informed lifestyle and wellness choices aimed at helping them live their best lives.
  • The Society-supported MS Outcome Assessments Consortium is working on a new measure of MS disability to improve the chances of successful clinical trials in MS, including progressive MS.

Understanding what drives progression and how to stop it

Researchers are exploring mechanisms that drive injury to the brain and spinal cord to expose new potential therapeutic targets along the injury pathways that may stop the damage. These include:
  • Large-scale studies tracking people with MS to identify factors that contribute to progression risk.
  • Advanced imaging and laboratory studies seeking to define and track the full measure of MS disease activity, MS lesions, and atrophy (shrinkage) in the brain and spinal cord.
  • Exploring the potential of different types of stem cells to repair the nervous system in models of the disease, and ways to enhance the survival of repair cells in inflamed and scarred nerve tissue.
Read complete article here 
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Providing educational information, resources and services for those affected by MS
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Beneficial information regarding Children with MS


                                                                  
  

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Prevalence

Although MS occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000-10,000 children (up to 18 years old) in the United States have MS, and another 10,000-15,000 have experienced at least one symptom suggestive of MS. Studies suggest that two to five percent of all people with MS have a history of symptom onset before age 18.

Diagnosis & symptoms

Diagnosing MS in children is more challenging than in adults due to the frequency of other childhood disorders with similar symptoms and characteristics. Pediatricians may not be familiar with MS because they are not expecting to see it in children. Children with MS benefit from comprehensive care through multidisciplinary teams that include pediatric and adult MS experts.

Once diagnosed, almost all children are considered to have relapsing-remitting MS, with most symptoms of MS similar to those seen in adults. There are, however, symptoms experienced by children that are not typical in adults, such as seizures and mental status changes (lethargy).
  • Children often experience more frequent relapses than adults with early MS.
  • Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.
Psychosocial consequences of MS in children and adolescents may affect academic performance, family relations, and specific adolescent issues including self-image and relationships with peers. An evaluation by a trained professional can help determine appropriate interventions, and resources are  available to help you navigate the school system through the Pediatric MS Support Group.

Treating pediatric MS

Studies have shown that the U.S. Food and Drug Administration (FDA)-approved self-injectable disease-modifying therapies developed for adults are also safe and well tolerated in children. At present, these medications are used “off-label” in children. Large clinical trials are needed to assess treatment efficacy for the disease-modifying therapies in children, adolescents and teenagers.
  • Small studies suggest that Tysabri® (natalizumab) is safe in children. It is used primarily in children who have not responded to other treatments.
  • There are no current data available on safety or tolerability of the oral medications in the pediatric population. 
The International Pediatric MS Study Group has written a series of articles, highlighting the advances, unanswered questions and challenges in diagnosing and treating MS in children. These articles have been published in a supplement to the journal Neurology. A publication from the Multiple Sclerosis International Federation (MSIF) summarizes the key points from each of these articles.
Network of Pediatric MS Centers
Click here to continue reading directly from the NMSS website