Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com

Tuesday, April 3, 2012

Please follow me...

Mom's Story and multiple sclerosis has moved to: http://momsstoryandmultiplesclerosis.com/. Please follow me at the new blogsite.

Tuesday, March 27, 2012

National MS Society-funded study suggests balance/ eye movement training improves fatigue, balance and other symptoms in people with MS

A recent controlled study suggests that a 6-week balance and eye movement-focused exercise program improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium in a group of people with MS, lasting for at least 4 weeks following supervised training. Larger and longer studies are needed to determine how long the benefits last, and which people with MS would be most likely to respond to the training program. The study, by Jeffrey Hebert, PT, PhD (University of Colorado, Aurora) and colleagues, was reported in the journal Physical Therapy in August, 2011 and was partially funded by a pilot research grant from the National MS Society.


Background: Fatigue and impaired balance are two common and troublesome symptoms experienced by people with MS. Current treatments vary greatly in effectiveness. This study is the first to examine the effects of an exercise program involving balance and eye movement training – or “vestibular rehabilitation” -- in people with MS to see if it improves both fatigue and balance.

The study: For this controlled study, 38 people with MS were divided into three groups: one group did not participate in an exercise program and only received normal MS medical care; one group participated in a general exercise program involving endurance and stretching; and one group participated in the vestibular rehabilitation program specifically designed to improve balance. The endurance and stretching exercises included bicycle riding and exercise designed to stretch various muscles. The vestibular rehabilitation program included balance exercises on various surfaces (firm surface, foam cushion, trampoline, tiltboard), arm movements while kneeling, head movements on a trampoline and while fixating on different objects, ball catching while walking. The vestibular rehabilitation program also included 3 types of eye movement exercises. Both exercise programs were performed for 60 minutes twice a week in the clinic. A daily home exercise program, consisting of a subset of exercises performed in the clinic, was also assigned to each participant. The exercise training programs lasted for 6 weeks.


Effects on balance, fatigue, dizziness/equilibrium, depression, and walking ability were examined at the end of the 6 weeks and also 4 weeks after the exercise program had ended. At the end of the 6-week period, the group that underwent the vestibular rehabilitation program showed improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium. Depression and walking ability were minimally improved. Neither of the control groups showed improvement in balance, fatigue, or dizziness/disequilibrium disability. Four weeks after the exercise program ended, those in the vestibular rehabilitation program group continued to show benefit.

It should be noted that in this study, the bicycle riding was not designed as an aerobic exercise, and thus these findings do not counter prior research studies that have shown benefits of aerobic exercise on MS fatigue. In their paper, the researchers suggest that the vestibular rehabilitation program reteaches the brain how to maintain balance when performing activities during standing or walking, after such abilities are impaired by MS, leading to improved balance, fatigue and dizziness.

Future studies should include more participants and a longer follow-up to determine how long the benefit lasts and which people with MS would most likely respond to this program. Proposals for these investigations are underway.

Based on these preliminary results, balance and eye movement training may help people with MS who are experiencing fatigue and balance problems. Those wishing to explore this option should consult with their neurologists, local rehabilitation facilities or hospitals to see whether this type of training is available.



Sunday, March 11, 2012

Study: Woman’s Risk of Having a First Neurologic Event, Which Often Leads to MS, Decreased with Increased Number of Pregnancies

Women’s risk for developing clinically isolated syndrome, which often leads to multiple sclerosis, was shown to decrease with increased number of pregnancies in a comprehensive study undertaken in Australia. Clinically isolated syndrome (CIS) is a first neurologic episode caused by inflammation or damage to nerve fiber-insulating myelin in the brain or spinal cord. Although the results of this Ausimmune Study need to be confirmed, the findings encourage further exploration of potential treatments such as sex hormones, which may mimic pregnancy’s benefits in women with MS. The sex hormone estriol is currently in clinical trials, supported by the National MS Society and the National Institutes of Health, to treat women MS.


Anne-Louise Ponsonby, PhD (Murdoch Childrens Research Institute, Melbourne) and colleagues across Australia report their findings in Neurology (2011;76:540-548). This study was supported by a research grant from the National MS Society to Anthony McMichael, PhD, the National Health and Medical Research Council of Australia, and MS Research Australia.

Background: Before 1950, most women with MS were counseled to avoid pregnancy because of the belief that it might make their MS worse. Over the past 40 years, studies in hundreds of women with MS have almost all reached the opposite conclusion: that pregnancy reduces the number of MS exacerbations, especially in the second and third trimesters.

The Ausimmune Study was undertaken to investigate whether increased exposure to sunlight and vitamin D may be protective against MS in people who had not yet been diagnosed with MS, but who had experienced a CIS. Read more about previously released findings. In the current study, the team used this unique population to study whether the number of pregnancies or offspring affects the risk for developing a CIS.

The Study: Investigators looked at the records of 282 men and women who had developed a CIS, and compared the number of children – and in women, the number of pregnancies – with controls who did not develop CIS.

Women who had one pregnancy were nearly half as likely to develop CIS, and those with three or more pregnancies had more than one fourth the risk of developing CIS compared with controls. Other factors considered – such as sun exposure and immune-system-related genes associated with MS – did not otherwise explain these associations. There was no association between risk of CIS and the number of children in men.

Comment: In an accompanying editorial, Martin Daumer, PhD, Brian G. Weinshenker, MD, and Rhonda Voskuhl, MD, comment that these findings need to be replicated in other countries to be validated, and caution that the study does not address whether pregnancy affects the long-term course of MS or development of disability.

Even with these caveats, the editorial authors say that because of studies such as this one, there is a compelling need for research to develop therapeutic approaches that mimic pregnancy’s benefits in women with MS. Dr. Voskuhl is now leading a team of investigators at seven medical centers to conduct a two-year, controlled clinical trial of estriol – a sex hormone that is increased during pregnancy – added to standard therapy to treat MS in 150 women with relapsing-remitting MS. This study recently completed enrollment.

This study provides additional evidence of a link between gender and autoimmunity. Read more about the Society’s efforts to study this link for clues to stopping MS in its tracks and ending it forever.



Tuesday, February 21, 2012

New Drugs Raise Hope for Patients With M.S.

.By LAURIE TARKAN



 Three years ago, Kristie Salerno Kent, a singer-songwriter, was standing in a security line at the airport on her way home from a gig when her legs went numb. “From the waist down, it felt as though I was trying to walk through a bowl of oatmeal,” said the 38-year-old musician, who has multiple sclerosis.

She inched her way to a security officer, who called for a wheelchair and helped remove her shoes and belt to get her through security. Frightened and embarrassed, she was taken to her gate in a wheelchair.

Three months later, she experienced another flare-up. While giving a live television interview about a short film she had made on living with M.S., she suddenly lost her ability to speak. “It was as if my mouth was packed with marbles,” she said. “I kept trying to say, ‘I’m sorry,’ to the reporter, but nothing came out that made sense.”

The medication she was taking to prevent these attacks was losing its effect, so her doctor suggested she switch to Tysabri, one of the newer, more potent “disease-modifying drugs,” which reduce the severity and frequency of relapses. She also began taking Ampyra, which early last year became the first drug approved to treat any M.S. symptom. She hasn’t had a flare-up since.

After decades of basic research on M.S., the last five years have brought a rapid rollout of new and sophisticated drugs that are changing how this disease is managed and offering patients new hope.

“We have a disease that’s gone from having no treatments 20 years ago to having multiple treatment options,” said Dr. Timothy Coetzee, the chief research officer at the National Multiple Sclerosis Society. “There is a growing recognition that M.S. is becoming a manageable disease.”

In M.S., the body’s immune system damages neurons in the brain and spinal cord, attacking the myelin sheath that insulates these nerves. About 85 percent of patients start out with what is called relapsing-remitting M.S., characterized by flare-ups or attacks that cause lesions to form on the brain and that affect the ability to walk, to see and to control the bladder, among other neurological impairments.

These attacks are short-lived, and patients typically recover from them. But more than half of patients eventually develop a progressive form of M.S., causing the permanent loss of these functions.

Once that happens, many of the treatments are ineffective. But the new drugs may slow, perhaps even prevent, the progression that was once considered inevitable for many patients.

“The drugs we now have are shifting what the natural history of the disease looks like,” said Dr. Coetzee.

Doctors can now choose from eight disease-modifying drugs, which reduce relapses and thereby slow the progression of the disease. Some of the drugs also prevent brain neurons from dying off, now thought to be a major cause of permanent disability.

There have also been advances in treating specific symptoms of M.S. Within the past two years, three medications have been approved specifically for M.S. symptoms: Ampyra to improve walking, Nuedexta for uncontrollable laughing or crying, and Botox for urinary incontinence and spasticity in upper limbs.

“We’re shooting for disease-free status, where someone with M.S. is on a medicine and has no sign of M.S.,” said Dr. Richard Rudick, director of the Mellen Center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic.

The first generation of M.S. drugs included mostly immune-suppressing interferons delivered via injection or infusion. These are still the most widely used, reducing relapses by about one-third. The new drugs are more sophisticated, targeting specific molecules involved in the disease, rather than simply tamping down the immune system to reduce inflammation in the brain.

Just last year, the first oral drug for M.S., Gilenya, gained approval with data showing it cut the relapse rate by 55 percent. Gilenya causes inflammatory cells called lymphocytes to get trapped in lymph nodes so they don’t travel to the brain, where they would damage neurons.

Patients need to be monitored for several potentially serious side effects, including a slowed heart rate and liver and vision problems. One patient recently died 24 hours after starting on Gilenya; the Food and Drug Administration is investigating the cause of the death.

The most potent drug, Tysabri, reduces the relapse rate by about 70 percent, but it comes with a small risk of a fatal brain infection caused by a common virus. Patients may be screened for antibodies to the virus; the risk of infection is considered quite low in those with no sign of the antibodies, and they are given the drug.

At least four other drugs with different mechanisms are in Phase 3 clinical trials and could win approval within the next year, experts say. Some work by protecting nerves from damage.

“There’s a lot of focus on developing drugs that inhibit or stop this neurodegeneration, which we believe is the underlying cause for difficulty walking, leading people to require a wheelchair,” said Dr. Rudick.

One of the new neuroprotective drugs, called BG-12, captured wide attention at an annual international conference on M.S. in Amsterdam in October. Researchers reported a 53 percent reduction in relapses in patients taking it and a greater than 30 percent reduction of permanent disability progression over a two-year period. It also appears to have fewer risks than equally potent drugs like Gilenya.

“This might be the drug that would completely displace the interferons,” said Dr. Timothy L. Vollmer, director of neurology clinical research at the University of Colorado.

Although many doctors start patients on interferons first because of lower risks, there is a growing recognition that treating patients aggressively and early with the newer medications can preserve brain neurons and possibly prevent the progression of the disease.

But treating M.S. is still difficult. Many treatments come with serious side effects and other risks, and some people simply don’t respond to them. Patients progress at different rates, and the symptoms vary from one patient to another. Some people cannot tolerate certain medications.

“The biggest frustration is the huge uncertainty,” said Dr. Jerome J. Graber, an assistant professor of neurology at Montefiore Medical Center in the Bronx. “I still can’t predict who will progress and what’s the best way to treat someone.”

Still, some patients are beginning to see a more hopeful prognosis. After Ms. Salerno Kent started taking Tysabri and Ampyra, her walking improved enough for her to go hiking with husband and son, her speech issues resolved, and she felt much more confident when singing on stage.

“We have so many more options now, and I realize that we no longer have to give up the quality of life because we have M.S.,” she said. “We’ve always expected to deteriorate with time, but I realize that this is not acceptable anymore.”



Monday, January 23, 2012

Virtual Insight Panel

WEGO Health will be hosting a sponsored virtual Insight Panel for active members of the online Multiple Sclerosis (MS) Community. This panel will focus on the needs of the online community and review of Multiple Sclerosis tools and resources. All participants will receive a $25 Amazon.com gift card for their participation. http://bit.ly/ppYhDf




Tuesday, December 20, 2011

Fast Forward and Lineagen to Collaborate to Develop Gene and Biomarker-Based Clinical Assays for Multiple Sclerosis

Fast Forward, LLC, a nonprofit subsidiary of the National Multiple Sclerosis Society, and Lineagen, Inc., an innovative molecular diagnostics company focused on complex, genetically linked disorders, today announced an alliance to fund the clinical development and validation of a blood-based assay for multiple sclerosis (MS). The goal of the program is to develop a test that can aid clinicians in diagnosing MS, distinguishing it from other neurological disorders, and providing the prognostic information needed to help guide treatment decisions and response to therapies.


Under the terms of the Sponsored Research Agreement, Fast Forward is committing $622,000 to establish and validate a broad array of biomarkers for MS, including genes associated with predisposition to the disease and blood based markers that have diagnostic and prognostic potential. The funding will support an ongoing clinical program that is being conducted under the teams of John W. Rose, M.D., Professor of Neurology at the University of Utah and Mark Leppert, Ph.D., Professor of Human Genetics at the University of Utah.

"We are pleased to partner with Lineagen in the advancement of its innovative technology for MS.” said Timothy Coetzee, Ph.D., Chief Research Officer of the National MS Society. "Fast Forward's partnership with Lineagen reflects our commitment to create new tools and technology to assist physicians in making diagnostic and treatment decisions that will improve the quality of life for people living with this disease."

Michael S. Paul, Ph.D., Lineagen’s President and Chief Executive Officer, stated, “It is a great opportunity for Lineagen to collaborate with Fast Forward and the National MS Society. This collaboration will enhance the development and validation of our proprietary gene and biomarker-based assay in MS. The funding from Fast Forward will accelerate this clinical program, allowing the collaborative team to evaluate and affirm a broad number of biomarkers simultaneously, with the collective goal of delivering our best testing services to physicians and patients.”

Dr. Rose commented, “One of the most critical challenges is to find answers to key questions such as How do we identify those patients who are more likely to experience disease progression and How do we determine patients’ potential responsiveness to therapy? With this important funding provided by Fast Forward, we will rapidly gain key insights that we believe can have a profound impact on the lives of people living with MS.”