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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.


Saturday, April 21, 2018

MS Video: Multiple Sclerosis Terminology: Clinically Isolated Syndrome Explained


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MS Video: Thank You MS Research Participants



Friday, April 20, 2018

Esclerosis múltiple

La esclerosis múltiple (EM) es una enfermedad del sistema nervioso que afecta al cerebro y la médula espinal. Lesiona la vaina de mielina, el material que rodea y protege las células nerviosas. La lesión hace más lentos o bloquea los mensajes entre el cerebro y el cuerpo, conduciendo a los síntomas de la EM.


La esclerosis múltiple (EM) es una enfermedad del sistema nervioso que afecta al cerebro y la médula espinal. Lesiona la vaina de mielina, el material que rodea y protege las células nerviosas. La lesión hace más lentos o bloquea los mensajes entre el cerebro y el cuerpo, conduciendo a los síntomas de la EM. Los mismos pueden incluir:
  • Alteraciones de la vista
  • Debilidad muscular
  • Problemas con la coordinación y el equilibrio
  • Sensaciones como entumecimiento, picazón o pinchazos
  • Problemas con el pensamiento y la memoria
Nadie conoce la causa de la EM. Puede ser una enfermedad autoinmune, que ocurre cuando el cuerpo se ataca a sí mismo. La esclerosis múltiple afecta más a las mujeres que a los hombres. Suele comenzar entre los 20 y los 40 años. Generalmente, la enfermedad es leve, pero algunas personas pierden la capacidad para escribir, hablar o caminar. No existe una cura para la EM, pero las medicinas pueden hacer más lento el proceso y ayudar a controlar los síntomas. La fisioterapia y la terapia ocupacional también pueden ayudar.



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Mylan Inks Deal with Mapi Pharma for Multiple Sclerosis Drug

 By Zacks Equity Research, 

Shutterstock photo
Mylan N.V. MYL announced that it has inked an agreement with Israel-based Mapi Pharma Ltd.
Both companies have teamed up for the development and commercialization of GA Depot, a long-acting Glatiramer Acetate product. Mylan also acquired the global marketing rights of the product.
We note that GA Depot is a proposed once-monthly injection for the treatment of patients with relapsing-remitting multiple sclerosis ("MS"), or RRMS. Mapi Pharma has completed an open-label phase II trial. The company is also preparing to commence phase III trials to support marketing applications. Both companies are preparing to submit an investigational new drug application to the FDA, as well as other global health authorities.
We remind investors that Mylan already has experience in the Glatiramer Acetate market.
In October 2017, Mylan launched the generic version of Teva's TEVA Copaxone 40 mg/mL which is indicated for the treatment of patients with relapsing forms of MS. Mylan's partner in Europe, Synthon, also received marketing authorization approval in Europe for Glatiramer Acetate Injection 40 mg/mL.
An estimated 2.3 million people on a worldwide basis are living with MS. Nearly 1 million people are living with MS in the United States. RRMS accounts for approximately 85% of initial MS diagnoses.  
The deal with Mapi Pharma will further strengthen the company's presence in the MS market.

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Thursday, April 19, 2018

Small towns most everywhere, seek Awareness, Inspiration and Multiple Sclerosis information

A Ride to Reach Rural America   
Bringing Inspiration and MS information to where it’s needed most.
One small town at a time

HELP us to Bring Inspiration and Multiple Sclerosis information to those affected by MS in under served communities of Rural America.  

Informational topics include:

  • Better knowledge of MS treatments for the disease and the symptoms.
  • Accessibility to healthcare 
  • Access to resources for financial support
  • Information about clinical trials and research
  • Discussions concerning the needs of a comprehensive MS healthcare team

Can you as an individual or as a company assist us to bring MS educational program to small towns in the USA.   -            Read More


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The goal of rehabilitation is to improve and maintain function


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Improving and Maintaining Function
  It is an essential component of comprehensive MS care. From the time of diagnosis onward, rehabilitation specialists provide education and strategies designed to promote good health and overall conditioning, reduce fatigue, and help you feel and function at your best — at home and at work.

If symptoms begin to interfere with everyday activities, rehabilitation can address these problems — with mobility, dressing and personal care, driving, functioning at home and work, and participation in leisure activities. Rehabilitation experts can also provide evaluation and treatment of speech and swallowing difficulties, and problems with thinking and memory.
Contact the Society online or call 1-800-344-4867 for more information or a referral to any rehabilitation specialist or other healthcare provider.

The rehabilitation team

Physical therapy

Physical therapists (PT) evaluate and address the body’s ability to move and function, with particular emphasis on walking and mobility, strength, balance, posture, fatigue and pain. Physical therapy might include an exercise program, gait training and training in the use of mobility aids (canes, crutches, scooters and wheelchairs) and other assistive devices. The goal is to promote safety, achieve and maintain optimal functioning, and prevent unnecessary complications such as de-conditioning, muscle weakness from lack of mobility and muscle contractures related to spasticity. Physical therapy can also include pelvic floor exercises which may help address urinary/bladder issues.

Occupational therapy

The goal of occupational therapy (OT) is to enhance independence, productivity and safety in all activities related to personal care, leisure activities and employment. OTs provide training in energy conservation techniques and the use of adaptive tools and devices to simplify tasks at home and in the office. They recommend strategic modifications to the home and workplace to ensure accessibility and convenience. Occupational therapists also evaluate and treat problems with thinking and memory.

Cognitive rehabilitation

Neuropsychologists — as well as many OTs and SLPs — evaluate and treat changes in a person’s ability to think, reason, concentrate or remember. While these professionals use different evaluation and treatment strategies, they share the common goal of helping people function optimally if cognitive changes are experienced.

Vocational rehabilitation

State vocational rehabilitation programs offer job readiness training, job coaching, job placement assistance, mobility training and assistive technology assessments — with the goal of helping people maintain their current employment or find new employment that accommodates their needs.

Speech-language pathology

The speech-language pathologist (SLP) evaluates and treats problems with speech and/or swallowing— both of which can result from damage in the central nervous system that reduces control of the muscles used in these important functions. The goal of therapy is to enhance ease and clarity of communication as well as promote safe swallowing and overall health. Some SLPs also evaluate and treat problems with thinking and memory.


American Physical Therapy Association
Provides an online search tool to locate APTA member physical therapists.
American Academy of Physical Medicine and Rehabilitation
Provides an online search tool to locate physiatrists.
American Academy of Clinical Neuropsychology
Provides an online directory of psychologists who are board-certified in clinical neuropsychology.
American Speech-Language-Hearing Association
Provides an online search tool for speech-language pathologists.
Article source

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Doctors urge MS patients not to believe everything they read on the internet.

Reprint - 04.19.18

For patients with complex and chronic medical conditions, knowledge is power. Without checks and balances, it also can be risky.
Physicians who treat patients with multiple sclerosis say the internet in particular provides a wealth of information, both good and bad. For patients seeking to learn more, Google can lead to websites and social-media platforms serving a steady diet of information about diagnosis, treatment and management of their disease.
While physicians welcome patient interest and knowledge, they also caution that not all websites are created equal and not all information found on the internet is valid.
“You don’t need to be a highly trained neuroimmunologist with multiple years of education to write something for the internet,” notes Aaron Boster, MD, director of the MS center at OhioHealth.
In general, physicians say they don’t discourage patients from seeking information online, as long as they bring what they find to their healthcare professionals.
When patients come to Boster with questions about things they’ve read on websites or online forums, “I see a patient who is engaged, who wants to be educated and involved in their care.”
So does Timothy Shephard, MD, vice president of neurosciences at Mount Carmel Health System. “The better informed a patient is coming into an appointment, the better that appointment is going to be. I have yet to meet a physician who doesn’t welcome a patient who has done research and is well-informed,” he says.
Tech-Savvy Patients
Because the average age of onset for MS is 30, many patients “are people who have grown up with an iPad in their hands,” Boster says. “These are millennials who are extremely comfortable with and savvy about the internet and social media.”
When seeking information about MS, physicians say this: Consider the source.
Especially in the first couple of years following a diagnosis, Boster advises patients to steer clear of the internet when it comes to MS advice. “It takes about two years for a patient to be comfortable in their own skin with their disease. They need to develop filters to evaluate what they read online. Until they do, their care team is that filter.”
Early in the course of their disease, “reading too much is guaranteed to make you frustrated,” says Boster, who also serves as OhioHealth’s system medical chief of neuroimmunology. Realizing, however, that patients won’t be able to resist the temptation, he urges them to “read with profound caution.”
Boster and others say it’s crucial for patients to bring everything and anything they read online to their physicians so they can separate fact from fiction. Physicians say it’s their job to temper expectations and provide reliable information. Boster has even initiated campaigns across Facebook, Twitter, Instagram and YouTube to dispense “digestible amounts of information” about the newest developments in MS.
Relying on the internet to diagnose and plan for multiple sclerosis is tricky because the disease manifests itself differently in each patient.
MS lesions can occur anywhere in the central nervous system, and symptoms can mimic other conditions, says Michael Racke, MD, a neurologist at OSU. For example, if the disease affects the optic nerve, loss of vision may result. If it happens in an older person, one might attribute that to normal aging. In a younger person, “We might be more inclined to think MS,” he says.
Because the disease represents a unique interface between the nervous system and the immune system, it’s nearly impossible to predict how it will evolve from person to person, Boster says. Twins can have the same disease yet experience it differently, he explains.
Due to this variability, “You can read something from a reputable source, and it still might not apply to your particular disease.”
Online Communities
By its nature, MS can feel like a “lonely” disease, Boster says. Some of its symptoms, such as pathologic fatigue, aren’t obvious or observable. Because of its relapsing/remitting characteristics, patients might seem well one month and debilitated the next.
That can cause problems in the workplace, where employers might mistakenly believe employees are shirking responsibility or malingering.
The Multiple Sclerosis Society of America has created visual models of the relapsing/remitting nature of multiple sclerosis to help employers understand what’s happening.
When dealing with workplace challenges and other issues, patient forums are another online source of support and information.
“Especially for the newly diagnosed, they can be helpful,” Shephard says. “Forums can be a good source of really creative ideas from people who’ve gone before you.” They can offer guidance, for instance, on the best places to shop to avoid fatigue, how to deal with summer heat, how to adapt a house for wheelchair access.
Because a significant number of MS patients have difficulty with cognitive processing at some point during the course of the disease, the forums can provide answers on how they and their caregivers deal with the situation, Shephard says.
Boster says forums serve their best purpose by providing a safe place for patients to share with one other. “There is a sense of acceptance, understanding and community that is invaluable.”
They also can be confusing because of the volume of opinions expressed.
Boster cautions that online platforms can be “the bathroom wall of comments,” with little accountability or ownership.
Too Good to Be True?
Those caring for people with multiple sclerosis feel perhaps most uneasy about the internet when it’s used to promote unproven,potentially dangerous treatments.
In the past few years, for-profit stem-cell clinics have proliferated in the United States and abroad. Their websites do not go unnoticed by patients, some of whom are willing to try anything.
“In the last 12 months, I’ve had so many patients ask me, ‘What about these stem cells?’” Boster says.
Although stem-cell therapy is not approved by the US Food & Drug Administration to treat MS, the clinics claim it provides relief from the disease. Some sites feature video testimonials from patients who say their lives have been transformed.
“It looks pretty impressive,” Racke says. “But are patients putting themselves at risk and undergoing procedures that aren’t medically necessary?”
He understands their frustration. “Patients who are desperate may be looking for something that is too good to be true. There may be a little too much enthusiasm for untested, unproven treatments.”
Such direct-to-consumer appeals by people promising miracles are “quackery,” Boster says. “It’s predatory behavior that is abominable. It’s selling false hope, and it’s taking advantage of people who are very vulnerable.”
Shephard says patients in the secondary progressive stages of MS are most at risk for seeking cures at any cost. “The best you can do is educate them on the potential risks of alternative therapies and explain why FDA approval is so important. But at the end of the day, it’s the patient’s right to do what they feel they need to do,” he says. “Healthcare is not about forcing people to do something. It’s about advising patients to make the best decision possible.”
Laurie Loscocco is a freelance writer.

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How to Handle Disability Discrimination in the Workplace

If you are facing workplace discrimination because of a disability, you should take action right away.

If you are facing workplace discrimination because of a disability, you should take action right away. The Americans with Disabilities Act (ADA) protects applicants and employees from disability discrimination in every aspect of employment, from hiring to benefits to termination. Many states and even local governments have similar laws, and some apply to smaller employers. (The ADA applies only to companies that have at least 15 employees).

This article explains the steps to take if you find you believe you are being discriminated against. If you feel in over your head, or you aren’t sure what to do at any point, consider consulting with an experienced employment lawyer.

Assert Your Rights

Your first step in dealing with disability discrimination is to point it out – and assert your rights. Even though the ADA has already celebrated its 20th birthday, a surprisingly large number of employers don’t understand the law or know what it requires. And, your employer might not fully understand how your disability does (or does not) affect you. The good news is that your employer may want to do the right thing, once it gets up to speed on the law.
For example, let’s say you were denied a promotion to a position that requires significant driving, because your employer believes that your use of a wheelchair will interfere with your ability to travel by car. You might meet with your manager and point out that you are perfectly capable of driving significant distances, as long as your vehicle is outfitted with special equipment. Because you have a disability, you are entitled to a reasonable accommodation. Your employer could either allow you to use your own outfitted vehicle, reimbursing you for its use, or could modify a company car or van to meet your needs. Either way, because you are capable of doing the job with a reasonable accommodation, your employer should reconsider you for the promotion. (For detailed information on your rights under the ADA, including reasonable accommodations, see our Americans with Disabilities Act page.)

Disability discrimination occurs when an employer or other entity covered by the Americans with Disabilities Act, as amended, or the Rehabilitation Act, as amended, treats a qualified individual with a disability who is an employee or applicant unfavorably because she has a disability.

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Did you know in rural America, disability benefit rates are twice as high as in urban areas?

Between 1996 and 2015, the number of working-age Americans who subsist on federal disability benefits grew rapidly, becoming one of the country’s most hotly debated social benefits. The rise has become another indicator of the divide between urban and rural America, where disability benefit rates are nearly twice as high.
Here are answers to some of the most important questions about this form of public assistance.
Q: What programs serve Americans with disabilities?
A: Two federal programs provide benefits to people with disabilities. One is Social Security Disability Insurance (SSDI), which was signed into law in 1956 and serves disabled workers. It is available only to people with enough work experience. The other, Supplemental Security Income (SSI), which began paying benefits in 1974, serves the disabled poor and is a means-tested benefit.
Q: If the number of people receiving disability has increased so much, it must be easy to get on the rolls, right?
A: Wrong. Disability benefits, for both SSI and SSDI applicants, are very difficult to secure. In fact, only about four in 10 applications are approved. It can take as long as two years, after several layers of appeals, to win approval.
Q: So what has driven the growth then?
A: This is more controversial. Most experts agree that the primary factor in SSDI’s growth is demographics. Because of the aging of the baby-boom generation, more people are at an age when disability is more likely. More women also are in the workforce. Then there is simple population growth. Some experts think those factors represent nearly all of the increase. But others point to a congressional act that broadened the definition of disability, economic factors such as recessions and approvals they criticize as too lenient as contributing factors.

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Sunday, April 15, 2018

How to Keep a Symptom Diary for Multiple Sclerosis

Why Keep a Symptom Diary?

Multiple sclerosis (MS) symptoms come and go. One day you're fine, but the next you may be too tired to get out of bed. Lots of things can affect the way you feel, from the weather to the medicines you take. A diary can help you track your symptoms and look for patterns that may explain why they're happening.
woman in bed

Low-Tech Is OK

Your diary doesn't have to be fancy. You can write it by hand in a journal you keep near your bed. Keep a log of how you feel every day and what you were doing when your symptoms started. You might write, "Yesterday I went shopping. I barely slept last night. Today, my symptoms were worse. My left arm felt weaker than my right."
woman with tablet

Go Digital if You Like

Free apps can help you manage your MS on your smartphone or tablet. Some let you track your symptoms along with your energy level, mood, medicines, and activity. Others sync the way you feel to the day's weather forecast and let you share your journal with your doctor.

Learn the Signs of MS

To keep an accurate log, you need to know what to look for. Some common MS symptoms you may have:
  • Intense fatigue that starts early in the morning or comes on suddenly and gets worse
  • Weakness in your legs and feet that makes it hard to walk
  • Numbness or tingling in your arms, legs, or face
  • Muscle stiffness and spasms
  • Double or blurred vision, or fast eye movements
  • Dizziness and balance problems
Continue reading

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