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Saturday, April 25, 2015

Researchers Report On What Happens When Multiple Sclerosis Patients Abandon Treatment


A team led by researchers at the New York University (NYU) Langone Medical Centerrecently assessed what happens when clinically stable patients with multiple sclerosis(MS) stop taking their medication and found that almost 40% of them experience to some extent a return in disease activity and related symptoms. The results of this study were presented on April 22, 2015 during the American Academy of Neurology Annual Meeting being held in Washington, D.C, Poster Session V – P5.192 entitled “Doctor, can I stop my medicine? Analysis of disease course after stopping disease-modifying therapy in stable MS patients.”
NYU Langone Researchers Report What Happens When Multiple Sclerosis Patients Abandon Treatment
MS is a chronic, progressive neurodegenerative disorder that results from the attack on the central nervous system by the body’s own immune system, causing inflammation and damage to the myelin layer that covers and protects neurons. Myelin loss leads to impairment in signal transmission along nerve fibers, affecting motor function (like coordination, balance, speech and vision), causing irreversible neurological disability and partial or complete paralysis. It is estimated that more than 2.3 million people in the world suffer from MS.
“Decisions regarding stopping disease-modifying therapy may have implications for short and long-term prognosis. We know a lot about what happens when therapy is started, but we know very little about what happens when therapy is stopped,” noted the study’s lead author Dr. Ilya Kister in a NYU Langone press release.
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For MS Patients: Tools and IDEAS to Make Your Life Easier

If you have MS, a few adjustments to your home and workplace can help you finish tasks safely and easily. Here's a room-by-room guide to devices that can simplify your life:

Entryway

Get a portable ramp that goes over the threshold of your front doorway so you don't have to go up steps. You can also buy a keyless entry lock and electric door opener. They open the door for you when you press a keypad or remote control.
Inside your house, replace doorknobs with lever-style handles. They're easier to turn.

Kitchen

Save your energy when preparing food. Use stools or chairs that are high enough to let you sit at your countertop while you cook or use the sink. You can reduce your meal prep time by using a food processor, blender, or microwave oven.
Look for kitchen aids that make preparing meals easier and safer. Get non-skid mats for counters so your bowls and cutting board won't slide around. You can also buy lightweight cookware that's easy to pick up and carry from the stove to the counter.
These tools can also help with meal prep:
  • Utensils with easy-grip handles
  • Grabbers to help you reach items on high shelves
  • Electric can opener
  • Rocker knives to help you cut food with less effort

Living Room

To make your lounging area comfy and safe, get raised chair or lift cushions. They can help you get in and out of your seat more easily.
Avoid throw rugs because they can add to your risk of falling. If you do get them, make sure they are non-skid.
Use extension cords that let you plug in lamps and gadgets without reaching for the outlet, but make sure they're not in the path where you walk.

Hallways and Stairs

Find ways to save your energy when you move to another area of your home:
  • Put handrails on both sides of the stairs.
  • Get a stair lift if you can't get up and down stairs on your own.
  • Install night lights with motion sensors along stairs, hallways, and throughout your home.

Bedroom

A gadget called an ECU (environmental control unit) lets you adjust the heat or air-conditioning with the push of a button. You can also use it to turn on the lights and open and close the drapes.
Some other equipment to consider:
  • A bed that raises and lowers by pushing a button
  • Button and zipper hooks, a long-handle shoehorn, and sock aids to help you put on and fasten clothing
  • A bedside commode so you don't have to walk to the bathroom in the middle of the night

Bathroom

Some simple adjustments can make washing up easier and safer. Look for combs and toothbrushes with easy-grip handles. Also install equipment such as:
  • Lever faucet handles that are simple to turn
  • Tub bench or shower chair so you can sit while you wash
  • Handheld shower head that reaches down to you
  • Non-skid surfaces in the shower or tub to prevent falls
Consider making these changes to your toilet:
  • A raised or adjustable toilet seat
  • A bidet toilet attachment to help you get clean after you use the toilet
  • "Bottom Buddy" tool that holds the toilet paper while you wipe and releases it into the toilet after you finish

Tools in the Office

If you work, you may spend a good part of your day in the office. Try these tools to stay comfortable and cut fatigue while on the job.
  • An adjustable computer, keyboard, and mouse that you can raise or lower to your level
  • Arm supports on your desk chair
  • Software that lets you dictate text into the computer or enlarges the text on your computer screen
  • Anti-glare computer screen to protect your eyes
  • Fan at your workstation or a cooling vest so you don't overheat
Ask your company if they can get some of these items for you. You might have to bring in a note from your doctor explaining why you need them.
Not sure which aids to get? See an occupational therapist. He can do a walk-through of your home and work space and suggest changes to make your life easier.
If you're worried about cost, ask the National MS Society about financial aid. Or find out if your state offers grants for equipment.

Source WebMD


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MS and Your Brain - Tactics for easier remembering

You can keep your memory sharp with some easy tips and tricks -- from old-fashioned sticky notes to high-tech gadgets.


Tools to Help You Remember

Digital recorder. Carry one with you. When you need to remember a name, phone number, or date, record a note to yourself. Write down the info or type it into your computer when you get home.
Cell phone camera. Use it to snap a photo of new people, places, and things. Email the pictures to yourself with a note so you'll remember them later.
Calendar. Use the one on your computer or cell phone to keep track of your schedule. Set it to send you reminders a few days or hours before a birthday, meeting, or other event.
If you're not a big fan of technology, write important dates on an old-fashioned paper calendar.
GPS system. Get one for your car and put an app on your cell phone so you don't get lost. Type in the address you're going to and you'll get step-by-step directions by car or on foot.
Buy a pillbox. Use it to organize your daily medicine. Some have built-in alarms that alert you when it's time to take your medicine.

Tricks to Keep Organized

White board. Put one on your fridge or other area where you spend a lot of time. Write notes and to-do lists on it.
Post-it notes. They're a good way to jog your memory. Stick them around your house, office, and in your car.
Box or bin for everyday items. Place it in a central area, like the kitchen. Put in your car keys, glasses, and other things you often use. You can also set aside a folder for important papers.

Information source



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Thursday, April 23, 2015

April 23, 2015 - TISCH MS RESEARCH CENTER OF NEW YORK REPORTS EARLY IMPROVEMENT IN STEM CELL TRIAL

Interim Results Indicate Positive Efficacy Trends in FDA-Approved Phase I Clinical Stem Cell Trial       For Patients with Multiple Sclerosis
New York, NY - April 23, 2015 Tisch MS Research Center of New York (Tisch MSRCNY) today announced encouraging preliminary results from its FDA-approved Phase I trial using autologous neural stem cells in the treatment of multiple sclerosis (MS). MS is a chronic autoimmune disease of the central nervous system where the myelin sheath is attacked and neurodegeneration may occur. It affects more than 2.3 million people worldwide. The significant results were selected for presentation during the Multiple Sclerosis Highlights in the Field session at the 67th American Academy of Neurology (AAN) Annual Meeting in Washington, D.C. 
Tisch MSRCNY research showed that in the interim analysis, six of nine patients are exhibiting increased motor strength, improved bladder function and an enhanced quality of life. Importantly, the treatments are well tolerated and thus far no serious adverse events were reported.
“This preliminary data is encouraging because in addition to helping establish safety and tolerability, the trial is yielding some positive therapeutic results even at this early stage,” said Dr. Saud A. Sadiq, Chief Research Scientist at Tisch MSRCNY and the study’s principal investigator.  He cautioned however, that these results are an interim analysis and definitive conclusions will only be made upon completion of the trial.   
The study investigates a pioneering regenerative strategy using stem cells harvested from the patient’s own bone marrow. These stem cells are injected intrathecally (into the cerebrospinal fluid surrounding the spinal cord) in 20 participants who meet the inclusion criteria for the trial. This is an open label safety and tolerability study and all activities are conducted at Tisch MS Research Center of New York and affiliated International Multiple Sclerosis Management Practice. The interim analysis reports on the first nine patients that have received at least one treatment of stem cells.
Study patient Vicky Gill, a married mother of two whose husband, Michael, also has MS, has already experienced the positive benefits of the therapy. “For the past six years, I would fall frequently, had very limited movement in my legs and always walked with my cane. After just two stem cell treatments, I am now gaining sensation and function I thought was totally lost, have not had any recent falls and at times don’t need a cane at all.”
Trial patients receive three rounds of injections at three month intervals. Safety and efficacy parameters will be evaluated in all patients through regular follow-up visits. Dr. Sadiq plans to continue and complete the Phase I study and if these positive trends continue, move on to a multi-center Phase II efficacy trial.
For more information on this study visit: www.tischms.org
Interim Results of the Tisch MSRCNY stem cell trial presented at the AAN Meeting:
(click on above image to download)
ABOUT TISCH MS RESEARCH CENTER OF NEW YORK
For over twenty years, Saud A. Sadiq, MD, FAAN has believed that combining excellence in clinical care with innovative research targeted at finding the cure for multiple sclerosis would set an exemplary standard in the treatment of MS patients.  Today, Tisch MS Research Center of New York embodies this new model of healthcare, with seamless interaction between the practice and the research. Dr. Sadiq and his team of scientists help those with MS by conducting cutting-edge, patient-based research to ensure unparalleled care. The unity of purpose and ease of communication between the non-profit research center and its affiliated clinical practice, the International Multiple Sclerosis Management Practice enables efficient testing of new MS treatments and accelerates the pace at which research discoveries move from lab bench to bedside. Tisch MS Research Center of New York aims to identify the disease trigger so that a cure for multiple sclerosis becomes reality.
Source Link, Click here
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Wednesday, April 22, 2015

MS Patient Travels Abroad to Receive Stem Cell Treatment


MS Patient Travels Abroad to Receive Stem Cell Treatment

stem cell therapy being administered to treat multiple sclerosis (MS) outside the United States was recently touted by an MS patient who traveled to Mexico to receive the therapy, revealing significant improvements in her quality of life. Debbie Bertrand, an MS patient who was diagnosed in 2001, is sharing her1 positive experiences with receiving the stem cell therapy, despite the fact that Celltex Therapeutics, the Sugar Land, Texas-based biotechnology company responsible for the therapy, was scrutinized by the U.S.Food and Drug Administration (FDA) in 2012 as part of the ongoing controversy about the treatment approach.
There is currently no cure for the chronic disease that affects over 2.3 million people worldwide, but stem cell treatment may help in the management of the disease’s progressively debilitating symptoms. MS leads to problems with vision, movement, balance, and cognition, dramatically affecting quality of life. However, the stem cell culturing and banking technology from Celltex is a novel therapeutic method that, according to the company, is helping to improve the quality of life of patients with degenerative and autoimmune conditions.
"I am very happy with the results I have seen,” said   -- click here to read full story


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MS Experts Join New Medical Advisory Board at MS Views & News Multiple Sclerosis News



MS Experts Join New Medical Advisory Board at MS Views & News Multiple Sclerosis News Today
Read about the two MS experts invited to compose the new Medical Advisory Board at MS Views & News.


http://multiplesclerosisnewstoday.com/2015/04/22/ms-experts-join-new-medical-advisory-board-ms-views-news/






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April 13th 2015 - Women’s Health and MS - Wellness, Self Aspects, Impact on Family & Beyond


Published on Apr 15, 2015
April 13th 2015 - from Miami, Florida

1 hour - 48 minutes of a "WOW" - watch me video to help educate Women with MS

Women’s Health and MS - The Impact on Employment and the Family
Health and Wellness, self aspects and beyond
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THIS PROGRAM was designed for Women with Multiple Sclerosis

SPECIAL Guest Speaker, From Jacksonville, Fl.
Megan Weigel, DNP ARNP-C
Megan is President-elect of IOMSN (Int’l Org. of MS Nurses) & co-founder of oMS Yoga


Discussion includes: MS in Brief, plus: Bladder Problems, Sexual Issues, Nutrition, Depression, Self-Aspects, Symptoms, Parenting/Family Living, Dating, when to tell /what to expose



Website: http://www.msviewsandnews.org
Blog (MS News archives): http://wwwmsviewsandrelatednews.blogs...
For information email: info@msviewsandnews.org


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Drug that boosts nerve signals offers hope for multiple sclerosis

Trialled antibody treatment thought to work by renewing the protective coating of neurons.
“Once we get a positive result, the field will move very quickly,” says Jack Antel, a neurologist at McGill University in Montreal, Canada. But that excitement is tempered by practical hurdles: there is as yet no proven way to measure remyelination of nerve cells in living humans.
Myelin sheaths insulate and support axons, the fibres that transmit signals between nerve cells. In multiple sclerosis, immune attack destroys these sheaths. Stripped of this protective coating, the axons gradually wither away, causing the numbness and muscle spasms that are characteristic of the disease. The 12 drugs approved in the United States to treat multiple sclerosis slow this immune attack — although sometimes with dangerous side effects. But none stops it, says Bruce Trapp, a neuroscientist at the Cleveland Clinic in Ohio.
Anti-LINGO-1 blocks the LINGO-1 protein, which inhibits the production of myelin. In doing so, the drug spurs myelin growth. It has consistently performed well in animal models and in human cells grown in culture.
LINGO-1 is not the only target for myelin-boosting therapies. Acorda Therapeutics of Ardsley, New York, is conducting clinical trials of an antibody that binds to the cells that give rise to myelin, although its molecular target is unknown. And this week in Nature, researchers report that two drugs marketed for skin conditions help to repair myelin in mice and in cultured human cells (F. J. Najm et al. Nature http://dx.doi.org/10.1038/nature14335; 2015).

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A New Model of MS?

Researcher creates new, visually appealing model of multiple sclerosis



WASHINGTON -- Multiple sclerosis may be more of a continuum than three distinct types of disease, and a new model attempts to capture that nuance, researchers reported here.

The "topographical" model could provide a new way of looking at disease course, Stephen Krieger, MD, of Mount Sinai in New York City, told MedPage Today.

"There's thought that MS is more of a continuum," Krieger said during an interview. "We should not think in terms of those categories, but we should think of it as a mixture of relapses and progression and how specifically they mix together."

Currently, MS is classified as being in one of three groups: relapsing-remitting, secondary progressive, and primary progressive. But Krieger -- a protege of Fred Lublin, MD, of Mount Sinai, who created the 3-category model of MS -- said that system doesn't accurately capture the range of disease.

"There's real diagnostic uncertainty," Krieger told MedPage Today. "It takes us years to figure out which category someone is in. A lot of progressive patients stay like they are for years. You're not always sure which category someone fits into, nor do those categories tell us how someone's disease is going to progress."

For his new model -- which Krieger calls a "true admixture of inflammation and progression" that describes the clinical course of MS in a more biologically informed way -- he incorporated five factors: topographical distribution of lesions and the relapses they cause, relapse frequency, relapse severity, relapse recovery, and progression rate.

It essentially suggests that the clinical manifestations of MS are a consequence of the interplay between inflammatory lesions -- the relapsing part of the disease -- and generalized loss of functional capacity, as seen in the progressive part of the disease. 

To illustrate the concept, Krieger came up with a peak-and-pool model: there's a shallow end that drops off into a deep end, where the shallow end represents the spinal cord and optic nerve, the mid-section represents the posterior fossa, and the cerebral hemispheres constitute the deep end.
At the same time, brain lesions appear as topographic peaks that rise from the floor of the pool. The water's surface is the clinical threshold, and when the central nervous system lesions' peaks cross it, a relapse or flare occurs.

Disease progression is represented by a falling water level, which essentially represents a loss of neurons and declining brain volume -- something that can be measured on MRI, Krieger said. Also, the model implies that progression could take the form of relapses as these peaks start to rise above the water, Krieger said.

Continue Reading



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Tuesday, April 21, 2015

ReTHINK MS RELAPSES -- Share YOUR Story

rethink MS REPLAPSES
Hello,

Real–life stories, stories like yours, matter. They connect us with each other and can have a real impact on our lives. If you are living with relapsing multiple sclerosis (MS) and would like to share your MS relapse story, you may have the potential to make a difference in the life of someone living with MS.
Share your Story
Find out more
Call us toll free: 1-855-578-5350
Find out more
rethinkmsrelapses.com
Mallinckrodt







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MS Foundation Cooling Program information

Cooling Program Accepting Applications 

With the beauty of spring often comes the ugly reality of heat intolerance for those with MS. The MSF Cooling Program provides special cooling garments to help handle this troubling symptom.

As body temperature rises, weakness, fatigue, visual disturbances, and other symptoms can become aggravated and temporarily worsen. Without help, the hot months can trap those with MS indoors, keeping them from countless activities associated with the season, like gardening, fishing, family outings, barbeques, and baseball games, but also making simple everyday needs, like going to work or grocery shopping, a challenge. So the MSF provides the necessary help to qualifying people through the Cooling Program.

This program provides cooling vests and cooling accessories to help individuals manage heat intolerance. Applicants must be residents of the United States and document their diagnosis of MS. All applications are confidential and considered on a case-by-case basis. To apply, those in need can call 888-MSFOCUS (673-6287) or http://www.msfocus.org/Cooling-Program.aspx

Applications will be accepted until June 1. Funding is limited, so apply soon.

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Ever considered meditating with your pet?

When we sit quietly with our pet and experience a moment of joy,  comfort and peace, we are
Petitating


Elisabeth Paige, a noted social scientist and experienced mindfulness practitioner, has introduced Petitations a new way to enhance pet owners’ experiences with their pets.  

The Petitations website (http://www.petatations.org/) contains seven newly-produced guided meditations that are available individually or as a complete set.  


Improve your health, and the health of your pet, with Petitations. We’ve been hearing that meditation can improve our health -- now you can double the benefits and enjoyment, when you Petitate with your furry friends. Whether you've never tried to meditate or you're looking for new ways to deepen your practice, Petitations are affordable and available instantly as downloadable, digital files.



Disclaimer: MS Views and News/Stu's Views and MS News, does not endorse any product or service found on our pages. We do always suggest that you speak with your healthcare provider or other therapist if and when needed



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Monday, April 20, 2015

A Randomized Placebo-Controlled Trial of Duloxetine for Central Pain in Multiple Sclerosis

Theodore R. BrownMD, MPHApril SleeMS
Background: Pain is common in multiple sclerosis (MS). Duloxetine has a potential therapeutic role in treating MS-related pain.
Methods: Thirty-eight MS patients were randomized 1:1 to receive duloxetine (n = 18) or matched placebo (n = 20). The dosing regimen was 30 mg daily for 1 week, then 60 mg daily for 5 weeks. The primary outcome measure was change in worst pain for week 6 relative to baseline recorded on a daily pain diary.
Results: Of 38 randomized patients, 14 (78%) patients randomized to duloxetine and 18 (90%) randomized to placebo completed treatment per protocol. These participants had an average age of 55.5 years, 25% were male, and 66% had relapsing-remitting MS (RRMS). Baseline characteristics were similar. Discontinuations were due primarily to drug intolerance. Among those who completed treatment, worst pain at 6 weeks was reduced by 29% (±20%) for duloxetine versus 12% (±18%) for placebo (P = .016). Average daily pain at 6 weeks was reduced by 39% (±29%) in the duloxetine group compared to 10% (±18.8%) in the placebo group (P = .002). There were no significant changes (week 6 vs. baseline) or between-group differences for subject global impression, Beck Depression Inventory, 36-item Short Form Health Status Survey (SF-36), or sleep quality score.
Conclusions: Fewer patients could tolerate duloxetine compared to placebo. Among patients who completed 6 weeks of treatment, there were significant reductions in average and worst daily pain scores with duloxetine compared to placebo. This study suggests that duloxetine has a direct pain-relieving effect in MS.
From the MS Center at Evergreen, Evergreen Health, Kirkland, WA, USA (TRB); and Axio Research, LLC, Seattle, WA, USA (AS).
Correspondence: Theodore R. Brown, MD, MPH, MS Center at Evergreen, Evergreen Health, 12039 NE 128th St., Ste. 300, Kirkland, WA 98034; e-mail:.


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