Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
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Saturday, November 8, 2014


I am recovering from surgical complications. Will be back soon.

Friday, October 10, 2014

National MS Society Invests Nearly $19 Million in New Research to Stop Multiple Sclerosis, Restore Function and End MS Forever

What do exercise, skin cells and gut bacteria have in common? They are among the new leads being explored to move us closer to a world free of MS.
The National Multiple Sclerosis Society has committed nearly $19 million to support an expected 54 new MS research projects. These are part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost, and ending the disease forever – for every single person with MS.
This financial commitment is the latest in the Society’s relentless research efforts to move us closer to a world free of MS, investing more than $50 million in 2014 alone to support 380 new and ongoing studies around the world. So that no opportunity is wasted, the Society pursues all promising paths, while focusing on three priority areas: progressive MS, nervous system repair, and wellness and lifestyle.
Just a few of the new cutting-edge research projects include a study at Stanford University using skin cells to produce repair cells for possible future use to restore nerve-insulating myelin in MS; pre-clinical studies by a commercial firm (Glialogix) to test the nervous system-protective qualities of an oral therapy repurposed to address progressive MS; a Mayo Clinic study of beneficial gut bacteria for clues to a novel therapeutic strategy for MS; and a wellness study at the University of Illinois at Urbana-Champaign testing whether an exercise program done at home can increase strength and balance and reduce falls in people with MS.
“The comprehensive nature of these new research investments is very exciting,” noted National MS Society Executive Vice President, Research Bruce Bebo, PhD.  “While we’re driving research to stop MS, restore function and end the disease forever, at the same time we’re identifying key interventions and solutions that can help people with MS live their best lives now.”  Download details about the new research awards.
Multiple sclerosis interrupts the flow of information within the brain and between the brain and the body.  Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.  Worldwide, over 2.3 million people live with the unpredictable challenges of multiple sclerosis.
“MS research is a top National MS Society priority, with increasing annual investments to drive solutions for every person with MS,” Cynthia Zagieboylo, President and CEO of the Society. “We fund the entire research spectrum, propelling novel ideas into the lab, translating breakthroughs into clinical trials, and moving success in clinical trials into new treatments for people living with MS.”
To find the best research with the most promise, the National MS Society relies on more than 130 world-class scientists who volunteer their time to carefully evaluate hundreds of proposals every year.  This rigorous evaluation process assures that Society funds fuel research that delivers results in the shortest time possible.
There are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS.  However, none of these can stop progression or reverse the damage to restore function.  National MS Society-funded research paved the way for existing therapies – none of which existed 20 years ago – and continues to be a driving force of MS research.

Friday, September 19, 2014

Anxiety and MS

By Julie Stachowiak
It is not often that I feel “lucky” as a person with MS, however, I do feel extremely fortunate to have never had to endure a mood disorder as a symptom of my disease. For a very brief time when I was younger, I suffered with periodic depression as a symptom of premenstrual syndrome, and that was enough to give me the tiniest glimpse into the horror of a mood disorder. When I was diagnosed with MS and learned about the variety of symptoms that I could encounter, my fear of depression and cognitive dysfunction far outweighed my fear of losing mobility.
Since depression is a well-known symptom of MS, I was shocked to learn at the 2014 ACTRIMS-ECTRIMS Meeting that more people with MS have an anxiety disorder than have depression. A study of 7786 adults with MS showed that 54.1% had “excessive symptoms of anxiety,” while 46.9% had “excessive symptoms of depression.”
It turns out that the prevalence of anxiety disorders in people with MS is roughly three times the prevalence of these disorders in the general population. More specifically, statistics show that among people with MS:
  • 18.6% have general anxiety disorder at any time (compared to 5.1% of people in the general population)
  • 10.0% have panic disorder (vs. 3.5% in general population)
  • 8.6% have obsessive compulsive disorder (OCD) (vs. 2.5% in the general population)
  • Social anxiety is also higher in people with MS than the general population.
In addition, more women with relapsing-remitting MS (RRMS) than men with RRMS are affected by anxiety disorders. People with secondary progressive MS were more likely to have symptoms of anxiety than those with other disease types.
Anxiety has received only a fraction of the attention depression has received as a disorder overall. However, it has been shown that anxiety in combination with depression, rather than anxiety or depression alone, are associated with increased thoughts of self-harm and more social problems. Despite the high prevalence in people with MS, as well as the potential risks when anxiety is combined with depression, the treatment or management of anxiety in MS has not been specifically studied. In my opinion, this is a problem, since MS symptoms can be made worse by the side effects of antianxiety drugs, which include: drowsiness and lack of energy, clumsiness, impaired thinking and memory loss, and slurred speech.
Another challenging factor is the difficulty faced by neurologists around diagnosing this disorder in their patients. There are a couple of reasons for this. People who are newly diagnosed with MS often exhibit symptoms of anxiety that may be transitory as they adjust to their diagnosis. More challenging is the overlap of symptoms between anxiety and MS. All of these extremely common MS symptoms are also symptoms of anxiety: pain, tremors, “buzzing” in their limbs, numbness, problems swallowing, tightness around the rib cage, sexual dysfunction and weak arms and legs.
What I would like to emphasize for anyone who is experiencing symptoms of an anxiety disorder or depression is that it is NOT your fault. People with these disorders can no more “pull themselves out of it” by “counting their blessings” or “looking on the bright side” than people in wheelchairs can get up and walk at will. If you are feeling any of the symptoms of these disorders, please seek professional help, preferably from a psychiatrist or other mental health professional who has experience treating people with MS.
Note: One very specific form of anxiety that was mentioned in the session was injection phobia, brought about when people have anxiety around self-injecting their MS disease modifying therapies. There has been some success in alleviating this using cognitive behavioral therapy. It is important to address injection phobia as soon as possible, as this reluctance to self-inject can lead to problems with adherence.

Saturday, September 6, 2014

Live Webcast: Research Advances from the World’s Largest MS Meeting

September 13, 2014

On Saturday, September 13, 2014, join a panel of experts for a live nationwide Webcast on "Research Advances from the World’s Largest MS Meeting"
Saturday, September 13, 2014
2 – 3 pm ET (1 – 2 pm CT, Noon – 1 pm MT, 11am – Noon PT)
To register for the live webcast please click here.
Topics include:
  • Progressive MS
  • Genetics
  • Wellness and rehabilitation
  • Repair and protection
Moderator: Kate Milliken, founder, Milligrace Productions. Kate has been living with MS since 2006.
Panelists include:
Dr. Philip DeJager, Brigham and Women’s Hospital, Boston, MA
Dr. Don Mahad, University of Edinburgh, UK
Dr. Ellen Mowry, Johns Hopkins University, Baltimore, MD
Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer for the National MS Society


We want to thank Genzyme, a Sanofi Company; Novartis Pharmaceuticals; Questcor Pharmaceuticals; and Walgreens Specialty Pharmacy for providing generous educational grants to make this program possible.
*For people who cannot participate in real-time, we will post the recorded version with transcript for viewing shortly after the event.

Thursday, August 28, 2014

Results Published from First Human Clinical Trials of “Anti-LINGO” Myelin Repair Strategy

August 27, 2014
Results from two phase I human safety trials of an exploratory treatment aimed at repairing myelin damaged by multiple sclerosis have now been published. One to two treatments with Biogen Idec’s BIIB033 (anti-LINGO monoclonal antibody) were given by injection under the skin or into the vein of healthy volunteers and people with relapsing-remitting or secondary-progressive MS. No serious adverse safety events were reported, and although these studies were not designed to evaluate effectiveness, the results were considered positive and have led to a phase II trial, now underway in relapsing MS. The results were published on August 27, 2014 in the online journal Neurology® Neuroimmunology & Neuroinflammation.
“It’s encouraging to see an entirely new treatment strategy aimed at repairing MS myelin damage moving forward in clinical trials,” noted Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the National MS Society. “Repairing myelin may be the best way to protect the nervous system from MS damage, and it holds potential for restoring function that has been lost in people living with this disease,” he added.
Background: In MS, immune attacks lead to the loss of myelin that coats and protects nerve fibers in the brain and spinal cord. Repairing the nervous system was just a dream a few years ago. Today it holds significant promise as a strategy to restore the function that MS has taken from people; and reducing or stopping MS progression. This remarkable progress is due in large part to the National MS Society’s comprehensive efforts and multi-million dollar research investments. Today the Society is supporting 87 research projects in nervous system repair, with multi-year commitments totaling over $35 million.
The first human trials of anti-LINGO leverage research aimed at stimulating the body's natural healing abilities. LINGO is a protein seen in neurons and myelin-producing cells (oligodendrocytes), and blockading this protein with a monoclonal antibody called anti-LINGO has been shown to promote remyelination in animal models.
Details: In these first tests of anti-LINGO in humans, 72 healthy people and 47 people with relapsing-remitting MS or secondary-progressive MS were given anti-LINGO or inactive placebo by injection under the skin or into the vein. The participants with MS were given two treatments, two weeks apart.
All participants were monitored extensively for any signs of adverse reactions. There were no serious adverse safety events noted. The most common side effects included headache, upper respiratory tract infection, stuffy nose, GI symptoms and urinary tract infection, and these were experienced by participants who were on placebo as well as those who received doses of anti-LINGO.
Generally phase I studies are not designed to detect benefit, but largely to evaluate the safety and tolerability of exploratory therapies, to refine appropriate dosing, and to determine whether they reach their targets – in this case, the central nervous system. That is true of these trials, and there was no evidence from MRI or other tests that showed clear evidence that existing brain lesions healed from this short exposure to anti-LINGO. However, the safety, dosing and pharmacology results were considered positive and have led to the design and launch of a phase II trial by Biogen Idec, now underway in relapsing MS.

Wednesday, August 13, 2014

New Study Yields Clues to How Nervous System Damage Occurs in MS

Understanding the damage that occurs to the brain and spinal cord during multiple sclerosis is key to finding ways to stopping MS progression. A new study by researchers in Austria provides new clues to the type and extent of nervous system damage in MS, opening new paths for further exploration that could eventually lead to better treatments to stop MS in its tracks. Lukas Haider, MD, Josa Frischer, MD and colleagues (Medical University of Vienna) report their findings in the Journal of Neurology, Neurosurgery and Psychiatry (Published Online June 4, 2014). The study was supported by the Austrian Science Fund.
Background: MS involves immune system attacks to the brain and spinal cord. The “white matter” in the brain consists of nerve fibers, which transmit messages to, from, and throughout the brain, and myelin. Myelin, the fatty substance that surrounds and protects nerve fibers, is white in color and is a major target of the immune system in MS. The “gray matter” in the brain includes the nerve cells and several associated structures. Recent research suggests that the gray matter is also damaged by MS, may be damaged early in the disease process, and has been linked to cognitive symptoms and disease progression.
The Study: Dr. Haider’s team studied the distribution of lesions – areas of damage – in brain tissue obtained from 75 people with MS via autopsy, as well as 12 controls without MS. Using a series of sophisticated laboratory techniques, they found that damage to gray matter was most prominent in the area of the brain known as the “basal ganglia,” an area associated with motor abilities, learning, cognition, and emotion.
Both white and gray matter damage were found in people with all types of MS. The extent of gray matter damage was similar in people with all types of MS, but white matter damage was more extensive in people with progressive MS. These findings indicate that there are important differences in the mechanisms by which white and gray matter damage develops, and these differences are apparent as well when damage develops in different parts of the brain.
The team also found elevated levels of iron in gray matter lesions, which appears to be liberated from myelin-making cells during injury and which may mean that these levels play a role in nerve cell degeneration in MS. Iron has been implicated in amplifying oxidative injury (a process wherein “free radicals,” normal byproducts of bodily processes, cause tissue injury).
Conclusion: This study provides some new information on nervous system damage caused by MS. More research, which is currently underway by investigators worldwide, is needed to understand the timing of the damage and to determine how this knowledge can be translated to new approaches to stopping MS progression.

Saturday, July 19, 2014

Online Radio Station for MS is First of its Kind offers 24/7/365 education, empowerment for MS community.
The Multiple Sclerosis Foundation (MSF) is proud to announce the launch of a new online radio station, MSFocus Radio. Found on the web at, or on mobile devices via a free app, this service of the MSF is a first of its kind for the MS community.
Featuring original content produced by the MSF in conjunction with our panel of healthcare experts, MSFocus Radio provides motivation, education, and empowerment to people affected by multiple sclerosis, 24 hours a day, seven days a week. MSFocus Radio is the MS resource that travels anywhere, thanks to free apps for both iOS and Android devices (available through iTunes and Google Play) provided by the MSF. 
Noting the station’s worldwide availability and round-the-clock scheduling, MSF Co-Executive Director Jules Kuperberg commented, “MSFocus Radio has dramatically broadened the scope of MSF's outreach both nationally and worldwide.”
To listen to MSFocusRadio or download the apps, visit now.

Saturday, July 5, 2014

Teams Report Success Enhancing Myelin Repair in Mice Using Stem Cells and Other Novel Approaches

Two teams of researchers funded in part by the National MS Society report success in stimulating the repair of nerve-insulating myelin in mouse models of MS. Myelin is a major target of immune attacks in MS, and although these are early results and further work is needed, these findings show some promise for strategies to repair damage and restore function for people with multiple sclerosis.
Background: In MS, myelin, the material that surrounds and protects nerve fibers, is damaged in the brain and spinal cord, and so are the cells that make myelin, called oligodendrocytes. Though the replacement cells that could repair myelin, called oligodendrocyte precursor cells (OPCs), exist in the brain, in MS they cannot adequately repair the damaged myelin.
Stem Cell Study: Lu Chen, PhD, Thomas Lane, PhD (University of California, Irvine) and colleagues report that administering neural precursor cells (nerve stem cells) to mice with MS-like disease reduced inflammation, decreased myelin damage, and increased myelin repair.
The team injected the stem cells into the spinal cord of mice with an MS-like disease induced by a virus. Although the stem cells were rejected by the body, and were not detectable within eight days after transplant, they were effective nevertheless in reducing the disease. Improvements in motor abilities of the treated mice were still apparent after six months.
The team noted that improvements went along with an increase in a type of immune cell called “regulatory T cells,” or “Tregs.” To test whether the Tregs contributed to the improvements, they blocked Tregs activity, which reduced the stem cells treatments’ impact.
The team speculates that the stem cells may be stimulating the immune environment in a way that activates mouse OPCs, even though the stem cells themselves do not turn into myelin-making OPCs. They are now investigating this idea further to discover the factors released by the stem cells. Ultimately, this information could contribute to the development of stem cell therapies and even cell-free therapies that stimulate recovery in people with MS.
Stimulating Resident Cells: Jessica Williams, PhD, Robyn S. Klein, MD, PhD, and colleagues (Washington University School of Medicine) report that targeting a signaling receptor (docking site) called “CXCR7” on immature oligodendrocytes in mice enhances myelin repair.
Dr. Klein’s team focused on a messenger protein (chemokine) that interacts with the immature OPCs. They studied mice that were given a toxin called cuprizone, which mimics myelin damage that occurs in the brain during MS. Once cuprizone is withdrawn, myelin repair occurs. The team found that CXCR7 activity increased during myelin damage, and then reduced with myelin repair. When the team administered an experimental compound that inhibits CXCR7, the numbers of OPCs, as well as mature oligodendrocytes, increased within myelin-damaged areas. Myelin repair was enhanced.
These data suggest that CXCR7 might serve as an important therapeutic target to promote myelin repair. Since these studies were conducted in mice, further research is necessary to ultimately determine whether this approach might be an effective approach for stimulating myelin repair in people with MS.
Conclusion:  Achieving success in the Society’s priority area of nervous system repair would provide life-changing advances for people with MS.  

Sunday, June 1, 2014

FDA Accepts Resubmitted Lemtrada™ Application for Review*

Genzyme, a Sanofi company, announced today that the United States Food and Drug Administration (FDA) has accepted for review the supplemental Biologics License Application (sBLA) for Lemtrada™ (alemtuzumab), a proposed treatment for relapsing forms of multiple sclerosis (MS). This application was recently submitted after the FDA did not approve Lemtrada in late December 2013, when Genzyme stated that they had received a Complete Response Letter from the FDA. This letter informed them that the application for their drug was “not ready for approval.” A new decision is expected in the last quarter of 2014.

The reason that the drug did not receive approval, according to the FDA, lies in the design of the Phase III studies. These compared the effectiveness and adverse effects of Lemtrada against an approved treatment for MS, versus a placebo (with no active ingredients). Because of dramatically different side effects between the two different medications, these studies were “unblinded,” meaning that both the patients and treating doctors were aware of which drug each of the patients was receiving. Whenever possible, clinical trials are double-blinded to prevent any potential bias toward the treatment being evaluated.

In order to resubmit the application, Genzyme and the FDA had “constructive discussions” to determine what would be necessary for the medication to be reconsidered for approval. In the resubmitted application, Genzyme provided additional data to address the specific issues that are of concern to the FDA. These data are from the same studies that were included in the original application.

Lemtrada is a humanized monoclonal antibody given in annual courses by intravenous (IV) infusion. It works by depleting the circulating lymphocytes (B and T cells). Lymphocytes are immune-system cells produced to fight infection and disease, and with MS, these cells are misdirected to cause damage to the nerves of the central nervous system (CNS) and the nerves’ protective covering (myelin). Lemtrada was originally approved by the FDA in 2001 for the treatment of a certain type of leukemia (B-cell chronic lymphocytic leukemia), using “Campath” as the trade name.
Lemtrada is already approved in 33 countries for the treatment of MS, including 28 countries in the European Union. Additional marketing applications for this MS medication are under review by other regulatory agencies around the world.

Lemtrada™ (alemtuzumab, formerly Campath) did not receive approval from the United States Food and Drug Administration (FDA) for the treatment of relapsing forms of multiple sclerosis (MS) in December, 2013 because of the design of the Phase III studies.

Friday, May 9, 2014

MS Trial Alert: Researchers in California, Colorado, New Mexico and Pennsylvania Recruiting Women with Progressive or Relapsing MS for Study of Estriol to Improve Cognition

Summary: Investigators in California, Colorado, New Mexico and Pennsylvania are recruiting 64 women with MS relapsing-remitting, secondary-progressive, or primary-progressive for a 12-month study in which the sex hormone estriol will be compared with inactive placebo for effects on cognitive function. Participants can remain on their prescribed MS medication throughout the study. Rhonda Voskuhl, MD (University of California at Los Angeles) is the principal investigator of the trial. The study is funded by various private donors to the UCLA program.

Rationale: Estriol levels rise to very high levels naturally during late pregnancy, a time when most women’s MS disease activity declines. This led some to suspect that estriol may be responsible for this easing of symptoms during pregnancy. Dr. Rhonda Voskuhl (University of California, Los Angeles) and others showed that in mice estriol treatment was indeed protective. They then explored this lead with Society support, showing that estriol decreased disease activity in a small, early-phase trial of estriol in 12 women with MS. The National MS Society funded a team of investigators at 15 medical centers to conduct a two-year, controlled clinical trial of estriol added to standard therapy to treat MS. This trial recently reported results.

Meanwhile, Dr. Voskuhl’s team also has shown that, in mice, treatment with estrogen (a hormone related to estriol) can improve nerve impulse transmission in an area of the brain related to learning and memory, called the hippocampus. Problems with learning, memory and other cognitive functions are common in MS. (Laboratory Investigation 2012;92:1234) These and other observations led to the launch of this clinical trial to test the ability of estriol to improve cognition in women with MS.

Eligibility and Details: The researchers are seeking volunteers who are women 18 to 50 who have been diagnosed with relapsing-remitting, secondary-progressive, or primary-progressive MS. If participants are on standard MS treatments, they may remain on these medications during the study.  Participants should not have had a relapse within 30 days before the day of trial enrollment. A cognitive test called the Paced Auditory Serial Addition Test (PASAT) will be administered to determine whether the participant qualifies for the study. Participants are excluded if they are on oral contraceptives, hormone replacement therapy, progesterone IUDs or other sex hormones during screening and during the 12-month study period. For more details about enrollment criteria, please contact the site nearest you (listed below).

Participants are being randomly assigned to receive oral estrogen (8mg/day) or inactive placebo for one year. The primary outcome is improvement in cognitive function as measured by PASAT scores. Secondary outcomes under study include measurements from brain MRIs, cognition, quality of life, depression, and fatigue.

Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact (for information about all sites nationwide):

University of California, Los Angeles
Contact: Jenny Bardens
Phone: (310) 206-2176

Sunday, April 13, 2014

Investigators Recruiting People with MS and Spasticity for a Study of Extended-Release Baclofen

Summary: Investigators nationwide are recruiting 214 people for a study to determine the effectiveness of extended-release baclofen capsules in relieving spasticity and symptoms related to MS. The study is sponsored by Sun Pharma Advanced Research Company Limited.
Rationale: Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common and troublesome symptoms of MS. Baclofen acts on the central nervous system to relieve spasms, cramping, and tightness of muscles caused by spasticity. This study is evaluating an extended-release form of baclofen. Extended release – in which a drug is released over time – may allow for it to be taken less often.
Eligibility and Details: Participants should be at least 18 years old, have any form of MS and a known history of spasticity. Participants should be taking immediate-release baclofen (30 to 60 mg) at the same dose and the same schedule for the last 30 days. Further details on enrollment criteria are available from the contact below.
Participants will receive baclofen immediate release capsules daily for one week, and then extended-release capsules daily for up to 16 weeks (doses will increase from 10 to 60 mg). Then participants will be randomly chosen to receive either the investigational drug or an inactive placebo for up to an additional 4 weeks. The dosage will gradually decrease during these 4 weeks.
The primary outcomes being measured are how many participants are able to complete the study, and safety.
Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact the site nearest you. The potential subjects should go to the study investigator list at to receive contact information for the nearest study site.

Friday, March 28, 2014

New Guideline from the American Academy of Neurology

The American Academy of Neurology, an association of neurologists and neuroscientists dedicated to promoting high-quality care for people with nervous system disorders, has released a guideline on the use of complementary and alternative medicine (CAM) in MS. The guideline was created by a panel of medical experts who evaluated all available published research studies. Through a comprehensive process, the panel carefully assessed the outcomes of relevant research studies, and also whether study findings could be generalized to the larger population of people with MS, and whether any safety concerns should be considered by physicians and patients who might use these treatments.
The widespread use of CAM by people with MS highlights the unmet need for more research and better therapies that will help people with MS live their best lives. Summaries of the guideline are available for patients and for clinicians.
Specific Guideline Information
Among studies of several forms of marijuana and its derivatives that were evaluated by the panel, the guideline reports that evidence suggests that:
  • Oral cannabis extract and synthetic THC (tetrahydrocannabinol, a major active component of marijuana) are effective for reducing patient-reported spasticity and pain, but not MS-related tremor or spasticity measured by tests administered by the physician;
  • Sativex oral spray (GW Pharmaceuticals) is effective for improving patient-reported spasticity, pain, and urinary frequency, but not bladder incontinence, MS-related tremor or spasticity measured by tests administered by the physician;
  • Smoked marijuana research studies have not produced enough evidence to assess its safety or effectiveness for treating MS symptoms including spasticity, pain, balance, posture, and cognition.
Oral cannabis extract, THC and Sativex are not currently approved by the FDA for use by people with MS. The guideline notes that, as with any therapy, along with potential benefits come potential side effects, and for these cannabis derivatives the most commonly reported side effects were dizziness, drowsiness, difficulty concentrating and memory disturbance.
The guideline also points out that the long-term safety of marijuana use for MS symptom management is not yet known.
Read about the National MS Society’s position statement and more about the use of marijuana for MS symptoms.
Among other CAM therapy studies in MS evaluated by the panel, the available research evidence suggested that:
  • ginkgo biloba is ineffective for improving cognitive function, but might reduce fatigue;
  • magnetic therapy might reduce fatigue;
  • reflexology might help ease unusual skin sensations such as tingling, but there is insufficient evidence to evaluate its potential for treating pain, fatigue, and other symptoms;
  • the use of omega-3 fatty acids with low-fat diet to reduce relapses or disability, or improving quality of life is not supported by current evidence.
The guideline includes a table of all of the CAM therapies that were evaluated. For many of these, the panel concluded that there was not enough evidence from research studies to advise as to their effectiveness in treating MS or its symptoms. The guideline also indicates that there is little known about how CAM therapies interact in the body with each other or with disease-modifying therapies that individuals may be taking. The effects and side effects reported from non-MS studies were not evaluated.
While many people with MS report that they experience benefits from CAM therapies, this guideline confirms the need for more research to demonstrate the effectiveness of these treatment strategies. The National MS Society is committed to ensuring that no opportunity is wasted in our mission to stop MS progression, restore function lost to MS, and end MS forever so that people with MS can live their best lives. We have supported, and will continue to support, CAM research and will continue to advocate for additional government funding for CAM research.

Tuesday, March 18, 2014

Researchers seeking people with progressive MS for nationwide trial of oral therapy

Summary: Investigators are recruiting for a phase II clinical trial of ibudilast (MN-166, MediciNova, Inc.), an oral agent, in 250 people with progressive forms of MS. The study, called the SPRINT-MS trial, is principally funded by the National Institutes of Neurological Diseases and Stroke (NINDS), with additional support by MediciNova, the company that will supply ibudilast, and the National MS Society. The study will be conducted through the NeuroNEXT Network, a clinical trials initiative of the National Institutes of Health. Robert Fox, MD (Cleveland Clinic Foundation) is the principal investigator.
Rationale: Among other actions, ibudilast inhibits an enzyme called phosphodiesterase, and has been shown to protect brain tissue in animal models. . While considered a “New Chemical Entity” in the United States and Europe, ibudilast is marketed in Japan and Korea to treat asthma and symptoms from cerebrovascular disorders. It is being investigated in the U.S. for its potential to treat drug addiction and now, for treating progressive forms of MS. In a previous study, ibudilast did not reduce relapses or MRI-observed new lesions in a phase II trial involving people with relapsing MS. However, some evidence that this agent could protect the nervous system from damage (neuroprotection) was observed, which is why it’s being tested in people with progressive forms of MS. (Neurology 2010;74:1033).
Eligibility and Details: Participants are people between the ages of 21 and 65 who are diagnosed with secondary-progressive or primary-progressive MS who are currently receiving either glatiramer acetate, interferon beta, or neither treatment. . Further details on inclusion and exclusion criteria are available from the contact below.
Participants will be randomly assigned to receive either oral ibudilast (100 mg/day) or inactive placebo daily for 96 weeks. Treatment will be added to existing glatiramer or interferon treatment in patients currently taking those therapies. The primary outcomes being measured are changes in brain tissue volume loss (determined through MRI scans) and safety/tolerability. Secondary outcomes being measured include further imaging outcomes, progression as measured by the EDSS disability scale, quality of life, cognitive function, and pain.
Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact the study site nearest you, as listed on

Sites will be enrolling in the following cities:
Atlanta, GA
Birmingham, AL
Boston, MA
Bronx, NY
Buffalo, NY
Charlottesville, VA      
Chicago, IL
Cincinnati, OH
Cleveland, OH
Columbus, OH
Dallas, TX
Denver, CO
Kansas City, KS
Los Angeles, CA
Miami, FL
Nashville, TN
New York, NY
Pittsburgh, PA
Portland, OR
Rochester, NY
Sacramento, CA
Salt Lake City, UT
Seattle, WA
St. Louis, MO
Stony Brook, NY
Syracuse, NY

Thursday, March 13, 2014

Study Suggests Adolescent Obesity and Genetic Factors Interact to Increase MS Risk

In a study comprising two large populations of people with MS and controls without MS, adolescent obesity was confirmed to increase a person’s risk for later developing multiple sclerosis, and this risk increased substantially in those with specific risk genes that control the immune system (known as HLA). Anna Karin Hedström, MD (Karolinska Institutet, Stockholm, Sweden) and colleagues in Sweden and California report their findings in Neurology (2014;82:1–8). More research is needed to confirm these results and to determine other risk factors that may help determine who is susceptible to MS and who is not.
Background: While MS is not contagious or directly inherited, epidemiologists—the scientists who study patterns of disease—have identified factors in the distribution of MS around the world that may eventually help determine what causes or triggers the disease. These factors include gender, genetics, age, geography, and ethnic background. The MS susceptibility genes identified to date are generally not clinically useful for providing genetic counseling to individuals regarding who may develop MS.
Because the prevalence of obesity has increased dramatically in the past several decades, and obesity is associated with an increase in immune system activity, researchers are seeking to determine if there was any association between obesity and the risk for developing MS.
Researchers recently reported that being overweight or obese was associated with an increased risk of developing MS or clinically isolated syndrome (CIS, a first clinical episode suggestive of MS, indicating increased MS risk) in girls, in a study that compared 75 children or teens with MS or CIS with the health records of more than 900,000 healthy children or teens (Neurology February 5, 2013 80:548-552).
The Study: Investigators used data from two studies on environmental and genetic risk factors, analyzing two populations: one that had 1,510 cases of MS and 2,017 controls without MS and another that comprised 937 cases and 609 controls. They obtained information on two genes previously associated with MS risk (the presence of “HLADRB1*15,” thought to increase MS risk, and absence of “HLA-A*02,” thought to be protective against MS), body mass index at age 20, and development of MS.
In both study populations, adolescent obesity was associated with increased risk of MS, as was the presence of HLADRB1*15or the absence of HLA-A*02. Participants who showed both adolescent obesity and either of the genetic risk factors had nearly an eight-fold increased risk of developing MS compared to those who were not obese in adolescence and who did not have any of the genetic risk factors.  However those who reported adolescent obesity and both of the genetic risk factors had a 16-fold or 14-fold increase in risk of MS. 
Conclusions: This study adds to the growing body of evidence that adolescent obesity is a risk factor for developing MS. The authors note that “biologic explanations are far from clear,” but they suggest that immune mechanisms associated with obesity may be active in driving the disease in people who are genetically susceptible. Additional research is needed to understand this association. It is important to note that not everyone who is obese during adolescence will develop MS, and also that many people develop MS without having been obese during adolescence.
“We should be concerned about these findings,” cautions Ruth Ann Marrie, MD, PhD (University of Manitoba, Winnipeg, Canada) and Christopher A. Beck, PhD (University of Rochester Medical Center, NY) in an accompanying editorial. “It is time to begin developing a targeted approach to prevent MS by improving common health behaviors, including body weight and smoking.”
About Multiple Sclerosis
Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

Thursday, February 27, 2014

Thinking Problems in People With Multiple Sclerosis

When you've got multiple sclerosis, losing your keys or forgetting a name can be scary. You wonder whether the illness is clouding your thinking.
It's true that over time, about half of people with MS can have some cognitive problems. That means poor focus, slowed thinking, or a fuzzy memory.
Often these problems are mild and don't really interrupt your daily life. It's pretty rare to have severe thinking problems. They affect about 5% to 10% of people with MS.

Signs of Impaired Thinking in MS

The clues that you have fuzzy thinking due to MS are often subtle. You might not notice them until a friend, co-worker, or family member points them out. You may:
  • Struggle to find the right words to say
  • Forget things you need to do or tasks already done
  • Find it hard to plan or set priorities
  • Have trouble concentrating, especially when two things are happening at once
MS usually does not hurt your intelligence or long-term memory. It won't change your ability to read or carry on a conversation.

Tests and Diagnosis for Impaired Thinking

If you suspect impaired thinking, talk with your neurologist or family doctor. Fuzzy thinking can have many causes.
Your doctor can make sure your problems don't come from normal aging or drugs that may cause confusion, depression, anxiety, or fatigue.
Once you have any health problems fully treated, the next step is usually testing. Your doctor may refer you to a neuropsychologist, speech pathologist, or occupational therapist.

MS and Rehab for Your Brain

If test results show that MS is to blame for spotty memory or poor mental focus, you may want to try rehab to sharpen your thinking. It can include:
  • Memory exercises on a computer
  • Home or work strategies with notebooks, organizers, or filing systems to help you remember things
It’s possible, but rare, that thinking problems become so severe that someone with MS needs constant care or can't live on their own. If this becomes an issue, discuss your options with your doctor and family. A social worker or psychologist also can help explore options for care.

Can Medicine Help?

Scientists are doing studies to see whether the drugs that slow the nerve damage in MS -- called disease-modifying medicines -- can help with thinking problems, too.
Others are looking at treatments, such as Alzheimer’s medications, that may temporarily improve your memory and focus. Ask your doctor to give you updates on any promising results.