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Entries in MS (8)

Wednesday
Sep192012

MS Patients Might Benefit From New Oral Drug

Jupiterimages/Thinkstock(NEW YORK) -- Thousands of Americans who suffer from multiple sclerosis (MS) might one day be able to take advantage of a drug that new research suggests is both safe and effective.

Multiple sclerosis is a chronic and often disabling disease that affects nearly 400,000 people in the United States. It attacks the protective substance called myelin that covers the nerve fibers of the brain and spinal cord.

Myelin is similar to the insulation of a wire and ensures proper nerve function. Once the myelin is damaged, the disease can also damage the nerve fibers themselves, leading to scars in these delicate tissues.

This damage leads to symptoms as mild as tingling in your feet and fingers, or as severe as paralysis or blindness. Eighty-five percent of MS patients are diagnosed with what is called relapsing-remitting MS, which means they experience flare-ups of symptoms, followed by partial or complete recovery.

A team of researchers looked at nearly 1,500 patients in 28 countries taking the experimental oral drug, known for now by the name BG-12, to see whether such flare-ups decreased, as well as whether they experienced any side effects from the treatment. The patients were studied for two years.

The results were encouraging. Overall, the patients receiving the experimental drug did better than the placebo group. Those who took the drug twice daily cut their chances of experiencing a flare-up by 44 percent, while those taking it three times a day reduced their chances by 51 percent. By comparison, the researchers wrote, a drug currently used for MS only cuts flare-up rates by 29 percent. Additionally, an MRI scan revealed that patients taking BG-12 had fewer scars on their nerves and brain.

If it is more widely used, the drug might offer hope to a large number of patients. If approved by the U.S. Food and Drug Administration, BG-12 would join two other oral medications on the market for MS.

"There is a great need for effective oral agents with acceptable safety profiles for MS patients with mild disease," said Dr. Lawrence Samkoff, associate professor of neurology at the University of Rochester in Rochester, N.Y., who was not involved with the study. "These newer oral medications will inaugurate a new era in the treatment of relapsing MS, giving patients and their physicians more choices."

Samkoff added that while BG-12 has some mild side effects, including flushing and an upset stomach, such symptoms tended to decrease within one month of taking BG-12.

Still, more research might be needed before BG-12 becomes more widely available, even after this two-year study.

"[Two years] is the standard these days, but the question is: is it adequate?" said Dr. John Corboy, professor and director of the department of neurology at the University of Colorado. "[It] is quite long in general, but very short when you consider the typical duration someone has MS."

Dr. Timothy Coetzee, chief research officer of the National MS Society, agreed. "As with any new therapy, it's important to do follow-up studies to understand the impact of the treatment over the long term," he said. "This will help us gain more specific knowledge of the long-term impact of this treatment on the immune system as well as the nervous system."

Copyright 2012 ABC News Radio

Friday
Jul202012

Ann Romney's MS Revelation: The Trauma of Diagnosis

ABC News (NEW YORK) -- Ann Romney told Robin Roberts Thursday on Good Morning America that the multiple sclerosis diagnosis she received 14 years ago was her "darkest hour" that left her "humbled" and "crushed" to dust.

Romney was diagnosed with multiple sclerosis in 1998 at age 49, after experiencing severe numbness and fatigue. While the average age at which a patient is diagnosed is 37, so many other patients, are at the beginning or middle of careers, marriages and raising children.

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord. The disease attacks the myelin sheath, a protective covering that surrounds nerve cells, and approximately 400,000 Americans have MS, according to the National MS Society. About 200 people are newly diagnosed each week.

While the disease is degenerative, symptoms, which affect the muscles, bowel function, vision, nerve and sexual function and personality, can vary and range greatly in severity.

Helen Solinski of San Jose, Calif., said she felt like the "rug was pulled out from under" her when doctors gave the diagnosis. She had just given birth to her son, and she said she ran from neurologist to neurologist seeking a cure.

"How would I take care of my child?" she wondered. "Was I going to be a little league mom in a wheelchair? Would I ever feel my son's hand in mine? I was completely numb on my left side during the first attack."

For Michelle Clos, 45, of Texas, her MS diagnosis sounded like "a lot of alphabet soup," she said, and she struggled to find a strategy that allowed her to address the challenges of MS without letting MS define her.

After she was officially diagnosed with the disease in 2001, she said she had to change the way she thought about life, "get rid of the non-essentials and use a positive approach to handle everything that life was throwing my way, which worked well for me, led me to reduce how much I worked and take what I learned about myself to start coaching others who were impacted by MS," said Clos.

People have spent their entire life up until the point of diagnosis imagining their life in a certain way, so they have to interpret how they're going to let go of that picture and how they see themselves, and fit that new information into the sense of who they are, Rosalind Kalb, a clinical psychologist and director of the Professional Resource Center at the National Multiple Sclerosis Society, told ABC News in June.

"It's a grieving process," she said. "And you can't move ahead on how you're going to live with MS until you spend a little time with the loss of a life without MS."

While the diagnosis can throw one's life into disarray, patients should not jump to any conclusions about how the disease will run its course, said Kalb.

It's important for patients not to rush out and quit their jobs or break up relationships because they may be able to live a full life with manageable symptoms," Kalb said.

 Doctors and patients do not know how their multiple sclerosis will behave in the early weeks and months after diagnosis, and it is really only in hindsight that one can understand the severity of their disease.

Some days are harder than others, Solinski said, but "the sun will come up every morning," she said. "It does and so do I. We all adapt …What truly drives me is my mission to stop this disease."

Solinski found purpose in combating her disease when she began working at the Myelin Repair Foundation, a nonprofit dedicated to funding research for myelin repair treatment targets.

"The Myelin Repair Foundation was exactly what I needed to get involved to channel my fear and anxiety of the what the future might hold," said Solinski. "MS can run in families, my greatest fear is my son receiving a diagnosis of MS. I can't stop fighting the disease."

For Clos, she said she takes the disease day by day by focusing on her goals.

She encourages "individuals in the MS community to pursue their own goals and overcome their challenges." She adds, "I continue to practice gratitude daily."

Copyright 2012 ABC News Radio

Monday
Jun182012

'Why Now?' New Dad Jack Osbourne Faces MS

Jason LaVeris/FilmMagic(NEW YORK) -- At only 26 and a new father, Jack Osbourne was diagnosed with multiple sclerosis earlier this spring.

The son of Ozzy and Sharon Osbourne told People magazine he was diagnosed only two weeks after his daughter, Pearl Clementine, was born in April.

"I was just angry and frustrated and kept thinking, 'Why now?'" Osbourne told the magazine. "I've got a family and that's what's supposed to be the most important thing."

While Osbourne is younger than the average patient who is newly diagnosed with MS, it is not by much. The average age at which a patient is diagnosed is 37.

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord. The disease attacks the myelin sheath, a protective covering that surrounds nerve cells, and approximately 400,000 Americans have MS, according to the National MS Society. About 200 people are newly diagnosed each week.

While the disease is degenerative, symptoms, which affect the muscles, bowel function, vision, nerve and sexual function and personality, can vary and range greatly in severity.

Because of the typical early onset of the disease, Osbourne, and many other newly diagnosed MS patients, are at the threshold of many life decisions, including career, marriage and children.

"People have spent their entire life up until the point of diagnosis imagining their life in a certain way, they have to interpret how they're going to let go of that picture and how they see themselves, and fit that new information into the sense of who they are," said Rosalind Kalb, a clinical psychologist and director of the Professional Resource Center at the National Multiple Sclerosis Society. "It's a grieving process, and you can't move ahead on how you're going to live with MS until you spend a little time with the loss of a life without MS."

While the diagnosis can throw one's life, particularly a young person's life that isn't fully settled, into disarray, patients like Osbourne should not jump to any conclusions about how the disease will run its course, said Kalb.

"It's important for patients not to rush out and quit their jobs or break up relationships because they may be able to live a full life with manageable symptoms," Kalb said.

Doctors and patients do not know how their multiple sclerosis will behave in the early weeks and months after diagnosis, and it is really only in hindsight that one can understand the severity of their disease.

"While the public face of MS may be the wheelchair and problems walking, most people with MS never need the assistance of a wheelchair, but instead live with uncertainty," Dr. Daniel Kantor, president of the Florida Society of Neurology and member of the American Academy of Neurology, wrote in an email. "We are blessed in America to live in a country with equal access to those with disabilities and so the hardest issue to cope with in MS is the fear of the unknown."

Because of the sudden change and the myriad of unknowns, Kalb said counseling is sometimes recommended to help people cope with the new diagnosis, but not always. Most importantly, she said patients need "access to good information and support from people around them."

"Most people do not have the luxury of psychological therapy after a diagnosis, but this would be ideal," said Kantor. "We welcome the Osbournes publicly supporting the notion of seeking counseling. This may benefit many other less famous patients."

Kalb said the people who tend to have the most difficult time with their disease are the ones who approach it with a "I'm going to beat this" attitude.

"We don't know how to beat this disease yet, we don't have a cure, but there are so many more treatments available than just a few years ago, so it's better to prioritize the days' challenges, and start that treatment early," she said.

Patients experience a wide range of early onset symptoms of the disease, but people will typically notice changes in their vision, especially when feeling overheated, and numbness, tingling and other strange sensations in their limbs and extremities. Others will experience pain or changes in their bladder function and memory.

Osbourne told People magazine he was diagnosed with the disease after he lost 60 percent of his vision in his right eye.

"The good news is that we have eight different treatments as a way of managing the disease," said Dr. Tim Coetzee, chief research officer with the National Multiple Sclerosis Society. "We have another three looking for approval from the FDA right now and three or four in late-stage clinical trials."

The advances offer options to help modify the disease and ease symptoms of decreased mobility and nerve function. Drugs like natalizumab are used to prevent flare-ups and inflammation.

Doctors recommend that patients begin treatments as early as possible, as that is when the medication is most effective in delaying and reducing events and onset, Coetzee said. Otherwise, patients are encouraged to maintain a vigorous, active lifestyle and a positive outlook.

"It's important to maintain a healthy but pragmatic approach to this disease," said Coetzee. "As with anything, we don't know where we will be in the future with this disease, but even just 30 years ago, there were so many unknowns. While there still are unknowns, there is a lot more we know about symptoms and treatments and a lot more knowledge to build a foundation on."

Copyright 2012 ABC News Radio

Thursday
May102012

FDA Issues Warning About Experimental Therapy

iStockphoto/Thinkstock(WASHINGTON) -- The U.S. Food and Drug Administration has issued a warning about the potential risks of an experimental therapy used to treat a condition -- chronic cerebrospinal venous insufficiency, or CCSVI -- often linked to multiple sclerosis.

CCSVI is characterized by a narrowing of veins in the neck and chest, and some researchers believe that the narrowing can lead to some of the central nervous system inflammation that is a hallmark of multiple sclerosis.

"However, studies exploring a link between MS and CCSVI are inconclusive, and the criteria used to diagnose CCSVI have not been adequately established," the FDA said in a news release.

CCSVI therapy, which has not yet been tested in clinical trials, consists of widening narrowed veins in the chest and neck through the use of balloon angioplasty or stents, both commonly used to treat atherosclerosis, or hardening of the arteries. The intervention is sometimes known as "liberation therapy," or a "liberation procedure," the agency said.

But the FDA added that so far, it has not approved the use of balloon angioplasty devices or stents to treat CCSVI. It also encouraged clinical trials that could solidify the link between the two conditions, and urged patients to discuss the risks and benefits of CCSVI therapy with their doctors.

CCSVI was first identified in 2009 by Dr. Paolo Zamboni, an Italian vascular surgeon. He later tried inflating the veins using the balloon procedure in 65 patients and, despite the fact that the study was unblinded and had no placebo group, Zamboni found some improvement in MS symptoms among most of them.

Despite Zamboni's reported success, MS researchers in the U.S. said it's too soon to know for certain how -- and if -- CCSVI and MS are related. There have been many patients in the U.S. and Europe who have had CCSVI therapy, though not as part of any clinical trial. Feedback about the therapy, experts said, has been mixed.

"Some patients will say they've had improvement, and others will say there's been no symptom improvement," said Timothy Coetzee, chief research officer at the National Multiple Sclerosis Society. "We need to assess whether or not opening up veins has any beneficial effect in changing the course of the disease."

The CCSVI Alliance, a group dedicated to promoting education and research on CCSVI, says on its website that while it does not promote or deter against having CCSVI therapy, patients should make risk assessments based on their individual situation and by careful discussion with their doctor.

A clinical trial to assess the safety and efficacy of the treatment is about to get underway in Canada, and as research continues, so will the debate over CCSVI.

Copyright 2012 ABC News Radio

Thursday
Apr262012

Ann Romney's MS Scare Highlights Variable, Unpredictable Disease

JIM WATSON/AFP/Getty Images(NEW YORK) -- Ann Romney's struggles with multiple sclerosis kept her away from her husband's campaign shortly before Super Tuesday.

The wife of the presumptive GOP's presidential nominee, Mitt Romney, told Entertainment Tonight about a "health scare" she had in the days leading up to the marathon day of primaries in March.

"I was quite fatigued, and I knew I couldn't quit. I didn't tell anybody I was tired," Romney said.

As she continued her work on the campaign, she said her symptoms worsened.

"You know, what happens with me is that I start to almost lose my words. I almost can't think. I can't get my words out. I start to stumble a little bit and so those things were happening and I thought, 'Uh oh, big trouble.'"

Experts say Romney's experience with MS is fairly common for the majority of people who deal with the symptoms of the disease, which is characterized by variable, often unpredictable symptoms.

Multiple sclerosis is an autoimmune disorder in which the body's immune system attacks the protective covering, called the myelin sheath, surrounding nerves in the brain and spinal cord.

When the nerves in these key structures are damaged, the impulses controlling basic functions like movement and cognition become distorted, producing a wide range of symptoms, some minor and some severe.

"MS is the most variable of serious neurologic diseases," said Dr. Fred Lublin, director of the Corinne Goldsmith Dickinson Center for MS at Mount Sinai Medical Center. "It can be very, very mild, to the point where some people don't know they have it, and it can be very debilitating for others. And everything in between."

Romney's experience with MS has become a central part of her husband's presidential campaign. The Romneys often discuss her 1998 diagnosis at age 49, and how she dealt with the disease while raising her five sons. Experts say a number of things about Romney's current schedule and role in the campaign may have aggravated her symptoms, producing the effects she described.

"Those who have MS have some underlying damage to the nervous system. If their system is off -- if they get overheated or stressed a lot or unusually tired -- the symptoms may manifest themselves" by making the transmission of impulses along the already-frayed neurons even worse, Lublin said.

According to the National Multiple Sclerosis Society, about 400,000 Americans and 2.1 million people worldwide live with MS. Most experience a range of symptoms that can come and go, but for some, the disease worsens progressively and becomes physically disabling. Romney herself has said she once feared that she would be confined to a wheelchair and would not be able to cook or care for her family.

MS is chronic, and there is no cure. But experts say the treatments for MS have vastly improved since the 1990s. The U.S. Food and Drug Administration has approved eight medications, half approved in the last five years. The drugs work to block the immune system's attacks on the brain and prevent relapses of the disease.

The drugs have been fairly successful in treating people like Romney, said Tim Coetzee, chief research officer at the National Multiple Sclerosis Society.

"The unmet need is tackling the need of people with more progressive, debilitating forms of the disease," he said.

Romney has said she keeps her MS under control with traditional medicine, but also uses a combination of alternative therapies, such as reflexology and yoga, to keep her symptoms in check. Romney is also an avid horseback rider, which is actually also a treatment for MS.

"It's known that horseback riding is particularly good for MS patients," said Dr. Adam Kaplin, an assistant professor of psychiatry and neurology at Johns Hopkins Medical Institute in Baltimore. "It helps people coordinate their balance and train their muscles."

Generally, experts say any exercise is helpful for managing symptoms of MS.

Although a stressful, tiring lifestyle can take its toll, many patients are able to keep their symptoms in check by staying tuned to their body's signals. They said there's no reason to think Romney's MS will keep her from fulfilling her responsibilities to her husband's campaign or her potential role as First Lady.

"There are scores of people with MS in highly active and stressful positions. They do just fine," Lublin said.

Copyright 2012 ABC News Radio

Friday
Apr202012

Early Use of Drug Might Slow Progression of Multiple Sclerosis

Comstock/Thinkstock(SAINT PAUL, Minn.) -- Early use of the multiple sclerosis drug interferon beta-1a might slow and even stop progression of the disease, according to new research from the American Academy of Neurology.

Patients who received interferon soon after their first disease symptoms were less likely to see the disease progress into "clinically definite" multiple sclerosis, which is categorized as having had two separate attacks along with two separate lesions.

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord.  The disease attacks the myelin sheath, an insulating covering that surrounds nerve cells and enables them to efficiently carry electrochemical signals, causing a loss of the covering known as demyelination.

The disease is degenerative and symptoms can vary.  Patients suffer attacks that can last days, weeks or months.  Symptoms affect the muscles, bowel function, vision, sexual function and personality.

"While we've known it's beneficial to start MS drugs as soon as possible, this is the first trial to show a benefit of early injections of interferon beta-1a treatment at three years," Dr. Mark Freedman of the University of Ottawa in Ontario and a fellow of the American Academy of Neurology said in a statement.

The three-year trial involved 517 people who had experienced their first MS symptoms, which include tingling, numbness, muscle weakness or balance problems.  The participants also showed at least two lesions on their brain that were detected through MRI scans.

One-third of the patients received injections of the drug three times each week, one-third received the injections once a week, and one-third received a placebo.  After two years, the patients who received the placebo were then given a three-times-per-week dose of the drug for another year.

Researchers found that those who received the once-a-week dosage or three-times-per-week dosage were less likely to experience a second demyelinating attack three years after the study's start.

Experts said the preliminary study results reinforce the benefits of early diagnosis and treatment for patients with MS.

Copyright 2012 ABC News Radio

Tuesday
Mar132012

Could MS Drug Be an Effective Treatment for Spinal Cord Injuries?

iStockphoto/Thinkstock(TOKYO) -- A drug found to slow some of the physical problems and reduce the number of flare-ups of multiple sclerosis (MS) could also show promise for treating spinal cord injuries (SCIs), according to a new Japanese study.

Researchers from the Jichi Medical University School of Medicine and the University of Tokyo's Graduate School of Medicine found that FTY720, also known as Gilenya, helped mice with spinal cord injuries recover some motor function when they were given the drug immediately after the injuries.

FTY720 acts in a number of ways, the study authors wrote.  The drug, provided by its manufacturer, Novartis, for this study, suppresses the immune system, which reduces inflammation that occurs after injuries.  Inflammatory effects, they explained, can worsen the damage done by SCIs.  The drug also helped the mice's damaged tissue regenerate, among other effects.

"The main biological activity responsible for these actions is believed to be immunological, but our data suggest that nonimmunological role(s) of FTY720 are also important in the treatment of SCI," they wrote.

The drug still needs to be evaluated in larger animals before determining whether it is effective in treating SCIs, but still has promise, the authors added.

Experts not involved with the study, however, are a bit more skeptical.  Many interventions work in mice, so determining the utility of Gilenya for SCIs in humans is a long way off, if it happens at all.

"Another issue is that in this study, the drug was given immediately after the SCI, and rarely do we have the opportunity to give a drug immediately after this type of injury in humans," said W. Dalton Dietrich, professor and scientific director of the Miami Project to Cure Paralysis at the University of Miami's Miller School of Medicine.  "One big question is if the drug delivery is delayed, will it work?"

Copyright 2012 ABC News Radio

Monday
May302011

Stress Not a Risk Factor for Multiple Sclerosis, Study Finds

Siri Stafford/Photodisc/Thinkstock(SAINT PAUL, Minn.) -- While stress can certainly aggravate symptoms of multiple sclerosis, new research has determined that it is not a risk factor in the development of the disease.

Looking at nurses aged 24 to 55 who participated in the Nurses Health Study, investigators asked each nurse about their various levels of stress, as well as their stress history.  The researchers also considered each participant's age, ethnicity and whether or not they smoked cigarettes.  Their findings showed no indication that stress increased one's risk for developing MS.

They did, however, find that young women were at the highest risk of developing the condition.

After ruling out stress as a significant risk factor for MS, the study author Trond Riise, of the University of Bergen in Norway, concluded that research can now focus on "repeated and more fine-tuned measures of stress."

These findings are pulished in the May 30 issue of Neurology.

Copyright 2011 ABC News Radio







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