Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and

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.”

Sunday, December 11, 2011

Researchers confirm link between MS and a gene linked to vitamin D

Investigators in the United Kingdom and Canada report an association between a rare variation of a gene that controls vitamin D levels and the development of MS in rare families with multiple members who have the disease. This gene variation causes dysfunction that leads to vitamin D deficiency, and the same variant was previously reported in two Norwegian families. Drs. George Ebers, Sreeram Ramagopalan (University of Oxford) and colleagues report their findings in the Annals of Neurology, Accepted manuscript online, November 25). Read a summary of the study on the web site of the MS Society of the United Kingdom, which funded the study along with the Wellcome Trust.

This gene was previously suspected to play a role in MS susceptibility based on a large-scale Australian genome study, along with many other gene variations that contribute to MS susceptibility. (Read about the largest genome-wide study yet, reported earlier this year.) Research is increasingly pointing to reduced levels of vitamin D in the blood as one factor that can increase the risk of developing MS. The National MS Society (USA) is funding several projects in this area, including a new clinical trial getting underway to test whether vitamin D can reduce disease activity in people who have MS. Read more about what we know about causes of MS.

Next week, the Society is convening an international summit in Chicago discussing whether it is possible to prevent MS using vitamin D. Register for a webcast to be held December 13, 2011 in conjunction with this meeting, featuring internationally prominent MS investigators discussing key MS research to follow in 2012.

Thursday, December 1, 2011

Positive Results Announced from Second Phase III Study of Alemtuzumab in MS

Genzyme has announced that the experimental intravenous therapy alemtuzumab (with a proposed brand name Lemtrada™) met two primary endpoints by significantly reducing relapse rates and the worsening of disability in a two-year study comparing alemtuzumab to standard subcutaneous dosing of Rebif® (interferon beta-1a, EMD Serono Inc. and Pfizer). The study, called CARE-MS II, involved 840 people with relapsing-remitting MS. The results were announced in a November 14, 2011 press release, which also indicated that the company plans to apply in early 2012 to the U.S. Food and Drug Administration for marketing approval. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Alemtuzumab has been designated by the FDA as a “Fast Track Product,” which should expedite its future review.

Tuesday, November 22, 2011

Mom's Story

Mom's Story, A Child Learns About MS* featured at Barnes and Noble, 90th and Shea, Scottsdale, AZ  on December 6, 6:30-8:00 pm.

Discussion with three authors, including Mary Jo Nickum, about memoir writing. We will sell and sign our books after the talks.

*Ten percent of the net proceeds from the sale of this book will be donated to the National Multiple Sclerosis Society.

Sunday, November 20, 2011

Mary Nickum

Mom's Story to be featured at Barnes and Noble. Mary Nickum

Saturday, October 29, 2011

Phase 3 trial of BG-12

Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced the average number of annual MS relapses in a two-year, Phase III clinical trial of more than 1400 people with relapsing-remitting MS. Although its exact mode of action is not known, BG-12 is thought to inhibit immune cells and molecules involved in MS attacks on the brain and spinal cord. The results of the CONFIRM study were announced in an October 26 press release. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Positive results from another Phase 3 trial of BG-12 were also announced this year, paving the way for a potential application for marketing approval.

Full details and evaluation of this study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. According to the company press release, these positive results set the stage for upcoming filings for marketing approval from drug regulatory agencies.

Friday, October 21, 2011

A Must-See Documentary on the History of America’s Disability Rights Movement

On October 27, 2011 at 10pm (Eastern Time), PBS will feature Lives Worth Living, an independent film that explores the challenges people with disabilities encountered before having equal access to schools, apartment buildings, and public transportation. Produced and directed by Eric Neudel, the film is told from the perspective of the disability rights movement’s pioneers, legislators, and other important advocates who for decades fought for equal rights and were victorious in enacting the Americans with Disabilities Act—landmark legislation that guarantees people with disabilities the equal access they deserve.

This powerful and moving film is made possible through the Emmy® Award-winning PBS series, Independent Lens. On October 27, be sure to tune in and watch a transformative film about the powerful movement that vastly improved the conditions for people living with a disability in the United States.

Wednesday, September 28, 2011

Research Identifies How Vitamin D Combats MS

New research has indicated that vitamin D directly terminates the production of a disease-causing protein, a discovery that may explain the association between levels of vitamin D in a person’s body and the person’s ability to resist or minimize the effects of MS.

According to the investigators, a collaborative team of scientists from the University of Medicine and Dentistry of New Jersey and Stanford University, the mechanism they identify suggests what might be a new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases. The mechanism identified by the research team works like this:

During MS (“EAE” in mice), a damaging protein called interleukin-17 (IL-17) is produced by immune cells in the brain.

After vitamin D binds to its receptor, the receptor parks itself on the gene that encodes IL-17.

By doing so, the vitamin D receptor occupies a site normally reserved for a protein called NFAT, which is required to turn the IL-17 gene on.

The gene stays off and IL-17 levels plummet.

At the same time, the vitamin D receptor turns on another gene, whose product generates suppressive T cells that combat the destructive action of their IL-17-producing counterparts.

The study is published in the September issue of the journal Molecular and Cellular Biology.

Monday, September 12, 2011

FDA Approves Botox® for Treating Urinary Incontinence in MS and other Neurologic Conditions

A new use for Botox® (onabotulinumtoxin A, Allergan, Inc.) was approved by the U.S. Food and Drug Administration, providing an additional treatment option for people with MS or other neurologic disorders who experience urinary incontinence. In clinical trials involving 691 with MS or spinal cord injury, targeted injections of Botox into the bladder muscle were found to be beneficial and safe.

Background: Bladder dysfunction occurs when MS lesions block or delay transmission of nerve signals in areas of the central nervous system that control the bladder and urinary sphincter. The result in MS can be a “spastic” bladder that is unable to hold the normal amount of urine, or by a bladder that does not empty properly and retains some urine in it. Retaining urine can lead to complications such as repeated infections or kidney damage. Left untreated, bladder dysfunction also could cause emotional and personal hygiene problems that can interfere with normal activities of living and socialization.

Botox is a powerful neurotoxin that temporarily blocks connections between the nerves and muscles, resulting in short-term relaxation of the targeted muscle. Injections have been shown in clinical trials to relieve spasticity in individual muscles for three to nine months. In March 2010 the FDA approved Botox for treating upper limb spasticity in people with MS and other disorders.

Injection of the bladder muscle with Botox is performed using cystoscopy, a procedure that allows a doctor to visualize the interior of the bladder. Cystoscopy may require general anesthesia.

FDA Approval: The FDA approval for treating bladder spasticity was based on results of two double-blind, placebo-controlled studies, one of which was presented at the 2011 Annual Meeting of the American Urological Association (Abstract # 1104026). The two clinical studies involved 691 people with urinary incontinence resulting from MS or spinal cord injury. In both studies, the weekly frequency of incontinence episodes showed statistically significant decreases in the Botox group compared with placebo.

According to the approved label, Botox is approved as a 200U dose for patients with urinary incontinence due to detrusor (the primary bladder muscle) overactivity associated with a neurologic condition. Patients should be considered for retreatment when the clinical effect of the previous treatment wears off.

The most common adverse events included urinary tract infection and urinary retention. According to the label, it is not known whether Botox is safe or effective in treating spasticity in children younger than 18. The medication carries a boxed warning that Botox injections may cause serious side effects that can be life threatening. These include problems swallowing, speaking or breathing, and the possibility that the toxin may spread to other areas of the body away from the injection site.

Read the FDA’s announcement here. If you have questions about the use of Botox for the treatment of spasticity, please consult your healthcare provider.

Tuesday, August 30, 2011

Applying A Holistic Approach to Solve a Complex Disease

Multiple sclerosis (MS) is a complex disease involving immune-system attacks on the central nervous system. Research into MS involves questions that dovetail many fields of science, including immunology, neuroscience, psychology and more. Promoting and funding collaborative research is one piece of the puzzle, receiving a great deal of media attention of late. However, it is even more important to apply a multi-faceted, rather than a singular approach, if we are going to speed solutions to complex biological problems that will result in stopping MS, reversing its damage and ending the disease completely.

Finding therapeutic targets, validating qualified biomarkers for disease activities, and most importantly initiating clinical trials with effective outcome measures are all pivotal issues that require the entire community of researchers.

We believe that a holistic strategy of supporting individual researchers along with multinational academic and commercial research teams will lead us to new treatments and ultimately cures faster than selecting a singular funding model. This year the National Multiple Sclerosis Society will commit $40 million to MS research that includes discovery research to advance knowledge; translational research to move initial academic and small biotech research discoveries through “the valley of death;” and clinical trials to advance breakthrough treatments that can change the lives of people living with MS.

Realizing that translational research was one of the most vulnerable links in speeding needed treatments to people with MS, the Society established Fast Forward in 2007 as a wholly owned subsidiary to spearhead research in this area. Fast Forward is already supporting projects in six young biotech firms, two of which have leverage that funding to secure pharmaceutical company support for phase 1 clinical trials. It has also entered into a $19 million collaborative research project with a major pharmaceutical company targeting neural repair and protection research, funding four drug development projects in its first year.

Understanding the need to leverage assets and knowledge in pursuit of a common goal is leading to whole new levels of collaboration among MS researchers. The National MS Society funded a $15 million international collaboration of more than one hundred researchers in the area of nerve repair and protection. This initiative has led to a critical first clinical trial repurposing an old drug phenytoin as a possible neuroprotective agent. Founded with the help of Society funding, the International Consortium of MS Genetics is now composed of top research facilities that were once rivals in the race to identify all common gene variants that make people susceptible to MS. These are just two examples of the highly collaborative approach that embodies biomedical research today.

Another example is the Society’s Collaborative MS Research Center Awards. These five-year grants provide flexible funding to bring together scientists and physicians from diverse fields fosters cross-fertilization of ideas and techniques to propel progress. The Society has 12 active Centers focused on questions such as what causes MS damage and how to stop it (Yale, UCLA), searching for new therapies to stop MS (Dartmouth, University of Alabama), and how can the nervous system be repaired (Mayo Clinic, New York University).

This is not to say that much more needs to be done in the realm of collaboration and building stronger, effective pathways from laboratory discoveries to new treatments for people with MS. However, it is unrealistic to think that solutions to the complex problem of speeding therapies to people with MS rests with one particular organization or model. All of the MS therapies we have today resulted from contributions of academic researchers, non-profit, governmental, and private efforts. Progress comes faster through an approach where all of the necessary “players” are involved in the solution.

We’ve started bringing together what may formerly have been considered unlikely allies: researchers from academia and pharmaceutical/biotech companies, along with leadership from research-active MS societies from around the world. For example, the Society convened such a group for a think tank in Boston in December 2010, focusing on the challenges associated with progressive MS, for which there are few therapeutic options.

The discussion reinforced the timeliness of the Society’s new Strategic Response to MS which is focusing on progressive MS. Advances in pathology and imaging are yielding new information about progressive MS. We now know that progressive MS features “diffuse” or “smoldering” inflammation, rather than the acute immune attacks that are seen in relapsing MS. This inflammation appears to be driven by cells called microglia, immune cells that reside in the brain. More work is needed to understand their role, but they are already being targeted by therapies in the MS pipeline, another example of multi-faceted collaboration at work.

Also, non-conventional brain imaging techniques are offering new windows to see the nervous system injury that occurs during the course of MS. These techniques, such as DTI (diffusion tensor imaging), may be helpful for detecting whether the nervous system is being repaired or protected by experimental therapies.

Think tank participants noted recent findings suggesting that a proportion of individuals with progressive MS who shows signs of active inflammation on MRI scans are likely to respond to the disease-modifying therapies currently available for treating relapsing forms of MS. This makes it clear that we need to re-evaluate the clinical definitions of progressive types of MS and identify biological underpinnings that can improve treatment today, and also help determine whom to enroll in clinical trials.

As a follow-up to this think tank, we are now holding talks with MS Societies internationally to lay the groundwork for a consortium on progressive MS research. And in May 2011 the Society and the European Committee for Treatment and Research in Multiple Sclerosis are convening an international workshop aimed at developing more sensitive outcome measurements for MS progression. We need new ways – the quickest, most efficient ways – to determine if therapies are stopping MS symptoms from getting progressively worse.

The Society is committed to pursuing all promising avenues; connecting people, resources and ideas; speeding development of treatments; and identifying and filling gaps – until we have found a way to stop MS in its tracks, restore lost function, and ending this disease forever by identifying its cause.

Dr. Timothy Coetzee

Wednesday, August 17, 2011

Live Fully, Live Well

Managing your health and wellness is an integral part of "living well" with MS. Live Fully, Live Well is a comprehensive wellness program from the National MS Society and Can Do MS, designed for people living with MS and their support partners. Live Fully, Live Well covers topics affecting the whole family living with MS in order to strengthen relationships, increase understanding and promote improved health and quality of life for the person with MS and their support partner. All four areas of this program can be integrated together or enjoyed separately to provide you with the resources, knowledge and tools to create a personalized wellness plan.


Register Now!: August 25, 2011 – 7:00 – 8:00 p.m. Eastern Time – Fatigue Related Challenges – Juliann Hanson-Zlatev, OTR DPT, Can Do MS Programs Consultant

Register Now!: August 25, 2011 – 9:00 – 10:00 p.m. Eastern Time – Fatigue Related Challenges – Juliann Hanson-Zlatev, OTR DPT, Can Do MS Programs Consultant

Tuesday, August 9, 2011

Fatigue: MS predictor?

 Fatigue is one of the most common symptoms of MS, and may be the most prominent symptom in a person who otherwise has minimal activity limitations. Joseph Berger, MD, and colleagues (University of Kentucky, Lexington) looked at the frequency with which fatigue “heralds” the onset of MS. Among 5305 people with MS, 29% reported fatigue in the three years before MS diagnosis. In 30% of these patients, fatigue was the only symptom preceding MS diagnosis. Fatigue preceded MS diagnosis by an average of 501 days. The authors advise that, in people experiencing unexplained fatigue, a detailed neurologic history and exam should be conducted to rule out MS.

Friday, July 15, 2011

MS and Bone Health

Researchers report that low bone mass was more prevalent among people newly diagnosed with MS, or those with clinically isolated syndrome (CIS, a first episode of MS-like symptoms), than among controls without MS. The risk of bone loss had been known for people with MS, but this study shows that it can occur very early, even before MS has been diagnosed. Stine Marit Moen, MD, and colleagues at Oslo University Hospital report their findings in Neurology (2011;77:151-157).

The team measured bone density in several areas and the total body in 99 people newly diagnosed with MS, or those with clinically isolated syndrome (CIS, a first episode of MS-like symptoms), compared to 159 controls without MS. They also administered a questionnaire concerning risk factors for osteoporosis (a disease that causes bones to thin). More than half of the people with MS or CIS had low bone mass, compared with 37.1% of controls, and low bone mass remained significantly lower in the spine and hip even after adjusting for other possible risk factors.

The authors conclude that this study “calls for an active approach to optimize bone health in early stages of MS.”

Monday, June 27, 2011

Company Decides Not to Seek Approval of Cladribine for MS

Merck Serono announced that it has decided not to pursue approval of its oral therapy Cladribine for the treatment of relapsing forms of multiple sclerosis. According to a company press release, discussions with the U.S. Food and Drug Administration made it apparent that the ongoing clinical trials of the therapy would not address the FDA’s requirements for approval. Details of these requirements have not been made public.

In March 2011, the company received a letter from the FDA indicating that its application for approval was not ready in its current form and outlining requirements for additional information. The company has stated that it plans to complete the current clinical trials and patient registry that are underway, and that results will be published.

“It’s disappointing that completion of the Cladribine trials will not lead to approval of a new therapy option for people living with MS,” says Dr. Timothy Coetzee, Chief Research Officer at the National MS Society. “However, thanks to the many people who participated in these clinical trials, results from these studies will add to the body of knowledge about MS and should help spur new leads toward stopping MS, reversing its damage and ending MS forever.”

Additional therapies, including oral therapies, are currently making their way through the development pipeline.

Sunday, June 5, 2011

Living with MS

Planning for the Future

Although MS is a progressive disease, the rate of progression differs from one person to another. The hallmark of MS is its unpredictability—which means that the doctor can’t predict with any certainty how far or fast a person’s MS is going to progress or what the outcome is likely to be. However, there are some factors that seem to suggest a better or worse prognosis. Taking these factors into account can help you and your family plan more effectively for the future.

Identifying Options

The key message to anyone living with advanced MS is that there is always more that can be done to make the situation better. If your doctor has “nothing more to offer,” it’s time to find another doctor (.pdf) - who will partner with you and other members of the health care team to manage your symptoms and maintain your quality of life. The National MS Society (1-800-344-4867) can recommend MS specialists and other resources in your area.

Learning to Redefine Control and Independence

Sometimes MS symptoms can progress to the point that they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth. When this happens, remember that maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before.

By allowing yourself to do things differently, you gain access to the world of assistive technology (AT)—an array of energy- and labor-saving tools and devices that allow you to stay active and productive. Rehabilitation professionals can help you navigate the world of AT and suggest ways to modify your environment at home and at work to optimize control and independence.

Dealing with Emotional Ups and Downs

Depression and other mood changes are common in MS, and grief is a normal reaction to the changes and losses that can accompany advanced MS. Getting the support you need to deal with these emotional challenges is essential to maintaining your quality of life.

Avoiding Complications

People with more advanced MS are at greater risk for certain kinds of complications. Examples include:

Osteoporosis (loss of bone density related to reduced mobility and weight-bearing exercise, as well as treatment with corticosteroids);

Pressure sores (damage to the skin caused by lack of mobility or long hours in a bed or wheelchair);

Aspiration pneumonia (a problem caused by swallowing problems that allow food particles in to the lungs);

Severe bladder or kidney infections (resulting from chronic urinary dysfunction).

To reduce your risk of complications, schedule regular check-ups with your MS doctor and report any unusual fevers or changes in your symptoms.

Thursday, May 19, 2011

New MS Treatments

A number of new multiple-sclerosis medications are beginning to hit the market that promise to make it easier for patients to control flare-ups of the disease and slow its progression.

The drugs, designed to be taken orally, represent a new generation of treatment for MS. Currently, people with the disease can choose from a range of drugs that are administered by injection.

Physicians say many people are reluctant to stick themselves with a needle and would be more comfortable taking a pill once or twice a day. This could encourage a greater number of MS patients to take medication as needed and could spur earlier treatment, which is important since disability from MS is cumulative.

Cost of the new drugs is expected to be high. Novartis AG's Gilenya, so far the only oral MS drug on the market, is priced at about $48,000 a year; the drugs still being developed are expected to cost about the same. That's higher than injectable drugs currently in use, which cost roughly $40,000 a year. Health insurers often pick up most of the expense of MS drugs.

There is a "tremendous desire" among MS patients to begin using oral treatments because of their ease of use, says Joseph Herbert, director of the MS Care Center at NYU Langone Medical Center. Still, he says, many physicians are being cautious about prescribing the oral drugs because their side effects can't be fully assessed until they are used widely for an extended period of time.

Among its side effects, Gilenya can increase a person's risk of infection and potentially lead to toxicity of the liver and an eye disease called macular edema, clinical trials have shown. Some of the oral drugs still in development are expected to have somewhat milder side effects.

The current injectable drugs have generally less severe side effects, including injection-site irritation and flu-like symptoms, although some patients incur more serious problems such as liver damage.

Elizabeth Fuchs, an MS patient on Staten Island, N.Y., began taking Gilenya about two months ago. The 49-year-old was diagnosed with MS about 12 years ago and had tried several injectable medications. Avonex, made by Biogen Idec Inc., required weekly intramuscular injections. She later switched to Copaxone, from Teva Pharmaceutical Industries, which is administered with a daily subcutaneous injection.

"It is just much easier to put a pill in your mouth and take a glass of water," Ms. Fuchs says. Not having to inject herself has made her feel more positive about having MS and even allows her to forget she has the disease, she says.

There is no cure for MS, a chronic, inflammatory condition that occurs when the body's immune system attacks its own central nervous system.

MS, which affects about 400,000 people in the U.S., is marked by symptoms such as vision problems, limb numbness and paralysis. Women are more likely to get the disease than men, and genetic factors may make certain individuals more susceptible, according to the National Multiple Sclerosis Society.

Gilenya, which received Food and Drug Administration approval last fall, is thought to work by reducing the quantity of circulating immune cells that can cause damage in an MS attack. More than 6,500 patients are taking the drug, according to the most recent Novartis data.

Recent data from large clinical trials of other drugs being developed, including Biogen Idec's BG-12, Teva Pharmaceutical's laquinimod, and teriflunomide, from Sanofi-Aventis SA, show they are also effective at controlling MS flare-ups and slowing the progression of disability from the disease. More data on the drugs are expected later this year and, assuming FDA approval, they could all be on the market in late 2012.

The success of any of these drugs isn't guaranteed. Another oral MS drug, Merck KGaA's cladribine, was rejected by U.S. and European regulators earlier this year amid long-term safety-related questions, including an increased cancer rate in patients taking the drug. The company says it remains committed to gaining approval.

Another drug, Biogen's Tysabri, was approved in 2004 but was later temporarily pulled from the market after it was linked to a rare brain infection. Tysabri, administered by intravenous infusion, became available again in 2006 but is limited mainly to patients who don't respond to other treatments.

A recent analysis by Novartis showed that Gilenya reduced relapses among MS patients by 54%. Disability progression was reduced by 30%, using a standard measurement of this process.

Biogen's BG-12 drug reduced MS flare-ups by a similar amount as Gilenya, but with fewer side effects. Smaller reductions in flare-ups were seen in trials with patients using laquinimod (23%) and teriflunomide (31%).

By comparison, Avonex, one of the leading injectable drugs, has been shown to reduce MS flare-ups by 32% and disability progression by 37% over two years.

Physicians say MS cases vary greatly and some drugs won't work for certain patients. Also, it is difficult to directly compare two different clinical trials.

NYU's Dr. Herbert says it is a challenge to get patients to use prescribed injectable therapies. Oral medications' ease of use should increase the number of patients who use the drug as required, he says. This also is expected to encourage some patients, especially those in the initial stages of MS, to begin therapy before the disease advances significantly.

"The data certainly suggest that starting therapy earlier does slow down the progression of the disease," says Timothy Coetzee, chief research officer for the National Multiple Sclerosis Society.

Doctors say they aren't likely to recommend a patient switch to one of the new oral drugs if an injectable drug currently in use is working. Although the ease of taking a pill, rather than an injection, is important, effectiveness of a given drug takes precedence. Patients who switch treatments run the risk of the new drug not being the right fit for them, says Mayo Clinic neurologist Mark Keegan.

Write to Thomas Gryta at

Sunday, May 15, 2011

Book Trailer

I just completed a Savvy Authors' Workshop. View my new book trailer on YouTube:

Wednesday, April 27, 2011

Blocking Crucial Molecule Could Help Treat Multiple Sclerosis

Neuroscientists have reported identifying a driving force behind autoimmune diseases such as MS, and suggest that blocking this cell-signaling molecule is the first step in developing new treatments to eradicate these diseases.

Researchers led by Abdolmohamad Rostami, M.D., Ph.D., Professor and Chairman of the Department of Neurology at Jefferson Medical College of Thomas Jefferson University, found that GM-CSF, which stands for Granulocyte-macrophage colony-stimulating factor, appears to be the key culprit in the onset of MS. Without GM-CSF, T helper 17 cells (Th17) cells did not induce the MS-like disease in an experimental animal model.

These findings were recently published in an advanced, online publication of Nature Immunology.

Th17 cells have been shown to play an important pathogenic role in humans and experimental models of autoimmune diseases, but the mechanisms behind this have not been understood until now.

There was no connection between GM-CSF and Th17 cells before," said Dr. Rostami. "What we have shown in this paper is that GM-CSF derived from Th17 cells is important in the cell-signaling process that leads to inflammation in the central nervous system."

"Now we know how the Th17 cells work and a better understanding of this mechanism and biology leads to new therapeutics," he adds.

The results suggest that blocking GM-CSF activity may be a successful therapeutic strategy in MS, one of the most common neurological diseases affecting young adults, and other autoimmune diseases, said Dr. Rostami, who is also the Chair of Neurology at Thomas Jefferson University Hospital.

These findings identify the interleukin-23 (IL-23)/ Th17/GM-CSF axis as the major pathway in pathogenesis of autoimmune central nervous system inflammation and likely other autoimmune diseases. IL-23, a known cytokine that causes autoimmune inflammation of the brain, induces production of more GM-CSF in Th17 cells, the researchers explain.

Dr. Rostami, who is also director of the Neuroimmunology Laboratory in the Department of Neurology at JMC, and his colleagues used an animal model of MS called experimental autoimmune encephalomyelitis (EAE) for the investigation, a common model used to study the pathogenesis of the disease. Mice whose Th17 cells cannot produce GM-CSF did not develop neuroinflammation, thus GM-CSF is responsible for disease manifestation in this experimental model. This scenario suggests feed-forward loop of IL-23 and GM-CSF driving the pathogenic encephalitogenic immune response in the brain and spinal cord.

Another recently published paper in Nature Immunology by Dr. Rostami and his team unraveled a mechanism that may help fight MS. The researchers found that a protein known as interkeukin-27 (IL-27) helped block, not induce, the onset of symptoms in animals with an MS-like disease. While increasing levels of GM-CSF may cause the disease, as shown in the current paper, increasing IL-27 concentrations may help quell an over-active immune system, the researchers reported.

"That was the first time that we had direct evidence that by actively giving IL-27 like a drug, we can suppress EAE in mice," Dr. Rostami said.

If similar findings from this current study of GM-CSF are found in human blood samples, this approach could eventually also be shown to be useful in the clinical setting, Dr. Rostami explains.

Whether GM-CSF drives neuroinflammation in MS remains unknown, but the current findings highlight the potential that IL-23 and GM-CSF might serve a similar role in human disease.

"This is the first step towards finding a new treatment," he said. "If we can try to neutralize GM-CSF by different means, for example, by trying to mimic it or trying to block the receptor for GM-CSF, we can hopefully ameliorate the disease."

Wednesday, April 20, 2011

Mother's Day

Consider giving a gift of love to Mother on Mother's Day: Mom’s Story, A Child Learns About MS.

Tuesday, April 19, 2011

Controlling the Muscle Spasms of Multiple Sclerosis

Many people with multiple sclerosis experience spasticity, or muscle stiffness and spasms. It usually affects the muscles of the legs and arms, and may interfere with the ability to move those muscles freely.

Spasticity can occur either as a sustained stiffness caused by increased muscle tone or as spasms that come and go, especially at night. It can feel like a muscle tightening or it can cause severe pain. Spasticity can also produce feelings of pain or tightness in and around joints and can cause low back pain. The intensity may vary depending on your position, posture, and state of relaxation.

What Causes Spasticity in Multiple Sclerosis?

Spasticity is the result of an imbalance in the electrical signals coming from the brain and spinal cord, often caused by damage to these areas from by multiple sclerosis. This imbalance causes hyperactive muscle stretch reflexes, which result in involuntary contractions of the muscle and increased muscle tension.

What Triggers Spasticity Due to Multiple Sclerosis?

For someone who has multiple sclerosis, spasticity may be aggravated by extremes of temperature, humidity, or infections. It can even be triggered by tight clothing.

How Is Spasticity Diagnosed?

To diagnose spasticity your doctor will first evaluate your medical history, including what medications you have taken and whether there is a history of neurological or muscular disorders in your family. To confirm the diagnosis, several tests can be performed to evaluate your arm and leg movements, muscular activity, passive and active range of motion, and ability to perform self-care activities.

How Is Spasticity Treated if I Have Multiple Sclerosis?

If you suffer from multiple sclerosis, spasticity can be treated using physical therapy, medications, surgery, or any combination of these treatments. Your doctors will consider the severity of your condition, your overall health, and the following factors when prescribing an appropriate treatment plan:

• Is the spasticity affecting function or independence?

• Is the spasticity painful?

• What treatment options have already been tried, and how did they work?

• What are the costs of the possible treatments?

• What are the limitations and side effects of the treatment?

• Will the benefits outweigh the risks?

How Does Physical and Occupational Therapy Help Spasticity?

A basic physical therapy stretching program is the first step in treating spasticity linked to MS. A daily regimen of stretching can lengthen muscles to help decrease spasticity.

An occupational therapist may prescribe splinting, casting, and bracing techniques to maintain range of motion and flexibility.

If physical and occupational therapy do not adequately control the spasticity, medications may be added to the treatment plan.

What Drugs Are Used to Treat Spasticity?

Common drugs used to treat spasticity include the muscle relaxants baclofen and Zanaflex.

Another drug that might be used to treat spasticity is Valium, which is often helpful when taken at night to relieve spasms that interfere with sleep.

If medications taken orally are not effective, a pump can be surgically implanted to deliver the medication (such as the baclofen pump). Botulinum toxin (or Botox) can also be injected locally into the affected area to relax the muscles.

What Types of Surgery Are Available for Spasticity?

When other treatments fail, rhizotomy and tendon release are two surgical procedures used to treat spasticity.

Rhizotomy involves surgically cutting away part of the spinal nerve. It is performed to relieve pain or decrease muscle tension.

Tendon release, also called a tenotomy, may be performed to help reduce the frequency or magnitude of the spasticity, depending on the age of the patient. The surgery involves cutting severely contracted tendons away from the muscles to which they're attached.

Tendon release may need to be repeated.

These surgeries are usually only done in extreme cases that do not respond to other treatments.

Friday, April 15, 2011

Study shoots hole in 'liberation' theory for multiple sclerosis

By Carmen Chai, Postmedia News

American researchers have cast fresh doubts on the theory underpinning so-called 'liberation therapy' for multiple sclerosis sufferers.

A new University of Buffalo study suggests that chronic cerebral venous insufficiency (CCSVI), which is a blocking or narrowing of extracranial veins that some researchers claim causes MS symptoms, may be a result of MS and not a cause.

"Given the intense interest in the hypothesis that CCSVI is a possible cause of MS, independent evaluation of CCSVI was identified an urgent need," said lead researcher Robert Zivadinov, a University of Buffalo neurology professor and president of the International Society for Neurovascular Disease.

Zivadinov's study, published Wednesday in the journal Neurology, examined 449 patients — 289 people who had MS, 163 who were healthy, 26 who had other neurological diseases and 21 who had experienced a clinically isolated syndrome (CIS), an individual's first neurological episode.

According to Zivadinov, results showed that only 56.1 per cent of MS patients and 38.1 per cent of CIS patients had CCSVI.

"While this may suggest an association between the MS and CCSVI, association does not imply causality," Zivadinov said in a statement.

Meanwhile, 42.3 per cent of participants who had other neurological diseases and 22.7 per cent of healthy people in the story also had CCSVI.

"These findings indicate that CCSVI does not have a primary role in causing MS. Our findings are consistent with increased prevalence of CCSVI in MS, but substantially lower than the sensitivity and specificity rates in MS reported originally by the Italian investigators," Zivadinov said in the press release.

Paolo Zamboni, a doctor at the University of Ferrara in Italy, had argued that CCSVI increased the risk of having MS by 43 times. The vascular condition restricts blood flow to the brain, which could cause muscle weakness and loss of sensitivity, he concluded.

Canadians suffering from MS have travelled abroad to Bulgaria, Poland, Mexico and other countries for the controversial liberation therapy procedure, which involves opening blocked veins in the neck. The procedure, developed by Zamboni, is banned in Canada because it is not scientifically supported.

Last November, a Niagara Falls, Ont., man died after he received liberation therapy at a hospital in Costa Rica.

Canada has one of the highest MS rates in the world.

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Friday, April 8, 2011

Scientists Reverse Multiple Sclerosis in Mice

Experimental treatment suppresses immune cells, forcing remission, study says

By Robert Preidt

.WEDNESDAY, Aug. 12 (HealthDay News) -- An experimental treatment that suppresses the immune system to put multiple sclerosis into remission completely reversed the disease in mice, Canadian scientists say.

In MS, the immune system attacks the central nervous system. The new treatment, called GIFT15, is composed of two proteins, GSM-CSF and interleukin-15, that are fused in the lab. Normally, the individual proteins act to stimulate the immune system, but when they're stuck together, the proteins suppress immune response, the researchers explained.

They do this by converting B-cells -- a type of white blood cell normally involved in immune response -- into immune suppressive cells.

"GIFT15 can take your normal, run-of-the-mill B-cells and convert them ... into these super-powerful B-regulatory cells," study team leader Dr. Jacques Galipeau, of the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal, said in a university news release.

He and his colleagues took normal B-cells from mice and sprinkled GIFT15 on the B-cells. "And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away," Galipeau said.

The treatment was fully effective with a single dose, and no significant side effects were seen in the mice, the researchers reported.

Their findings were published online Aug. 9 in Nature Medicine.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about multiple sclerosis.

Read more: - Connect to Better Health

Friday, April 1, 2011

Book sale and signing

Visit me and pickup a copy of Mom's Story at the Second Annual Disability Empowerment Center (DEC) Health and Wellness Fair, April 9, 9:00-4:00.

Monday, March 28, 2011

Study in Pediatric MS Shows Racial Differences in Cognitive Impact

MS affects some cognitive functions more severely in black children than white children, according to newly published research from a team at the University of Alabama at Birmingham (UAB). The findings could help healthcare providers create individualized treatments for children suffering from the disease.

"We don't yet understand the biological reasons, but the bottom line is treatment options must be re-evaluated and be aggressive enough, especially with black patients, to prolong quality of life for as long as possible," says Kelly Ross, M.A, a psychology doctoral degree candidate in the UAB College of Arts and Sciences and lead author of the study.

Although MS in children is much less common than in adults, the disease may impact cognitive function more in younger people because their nervous systems still are developing.

Sunday, March 20, 2011

What Does “Disabled” Mean?

There is really only one criterion for disability: can you do substantial paid work? “Substantial” means earning $800 a month. And it doesn’t have to be work you know, or work that is available in your community. Ability to do any kind of full-time paid work at all can disqualify you. (One major exception: if you work for yourself, the Social Security Administration [SSA] looks at your net income – what you report to the IRS – not at your gross.)

There are five ways people with MS can prove disability. These include substantial limitation of vision, cognitive problems, fatigue, or major disability of two extremities. SSA can also combine these factors, evaluated on what they call a “grid” of over-all disability.

You’ll need evidence to get disability. Rosemarie Johnson says, “You have to be proactive. Keep a journal and write about your symptoms and how they limit your activity. See your doctors regularly. That way, if you do need to apply for disability, you’ll have solid documentation.”

A detailed letter from your doctor testifying to fatigue or cognitive problems is powerful evidence of disability. So your doctors should ask about fatigue and cognition at each appointment, or you should bring it up. It’s helpful to get a neuro-psychological evaluation every couple of years and again before applying for disability. Letters from family, friends or anyone who has observed your daily activities can also document your disability

Saturday, March 12, 2011

Use your existing benefits and entitlements

No single insurance policy, program, or discount card is likely to include every prescription drug you may need. To find the best prices and services, you should take some time to identify the program or programs that can best meet your needs. The Internet is the best way to access this information. You may want to ask a family member or friend to help you, especially if your Internet access is in a public library, community center, or Internet café.

If you have some coverage for prescription drugs, make sure you’re making the best use of it to minimize your out-of-pocket burden. Review your health plan manual.

Are you following the plan’s rules about choice of pharmacy, the plan’s formulary (list of drugs approved for coverage) or “tiered co-payment” arrangements?

Are you using a mail order pharmacy for medications you take regularly over time? Most plans offer savings for this. If you need drugs such as antibiotics or painkillers right away or on a short-term basis, you can get them at a community pharmacy even if you use mail order for your long-term needs.

Have you discussed generic alternatives with your doctor?

Tuesday, March 1, 2011

MS and sunlight

Higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of having a first demyelinating event that can be the first indicator of multiple sclerosis, in a comprehensive study undertaken in Australia, called the Ausimmune Study. (A first demyelinating event, in this study called FDE, is also known as clinically isolated syndrome (CIS), a first neurologic episode caused by inflammation/demyelination in the brain or spinal cord.) Some of these individuals developed MS during the study and others did not, however findings were similar in either case. Robyn Lucas, PhD, Anthony McMichael, PhD (The Australian National University, Canberra) and colleagues across Australia report their findings in Neurology (2011;76:540-548). This study was supported by the National MS Society, the National Health and Medical Research Council of Australia, the ANZ William Buckland Foundation, and MS Research Australia.

The findings provide additional support for previous suggestions that sun exposure and vitamin D may help protect against developing MS. It remains to be seen whether safe and effective strategies can be developed that utilize this potential protection without the risks involved in overexposure to the sun or overdoses of vitamin D supplements, and whether these findings have relevance for individuals who already have MS.

Background: In all parts of the world, MS is more common at latitudes that are farther from the equator and less common in areas closer to the equator. This latitude effect has been under investigation for many years. Previous studies have found evidence suggesting that higher lifetime exopsure to sunlight (through which the skin makes vitamin D) and higher blood levels of vitamin D may reduce a person’s risk of developing MS. This is an active area of continued research.

The Ausimmune study was undertaken to investigate whether increased exposure to sunlight in those living closer to the equator and the vitamin D that is produced in part by sunlight may be protective against MS. Rather than studying people who had already been diagnosed with definite MS, which could alter a person’s lifestyle and recollection of past events, the team investigated sun exposure and vitamin D levels in people who had not yet been diagnosed with MS, but who had experienced a CIS. A CIS often, but not always, leads to a diagnosis of MS.

The Study: The investigators recruited participants who were aged 18–59 years and lived in four geographic regions of Australia between November 1, 2003, and December 31, 2006. The four regions were characterized by differing distance from the equator. A total of 216 people were enrolled who had experienced a CIS. A total of 395 controls were randomly selected from the Australian Electoral Roll and matched to the CIS cases in age, gender, and study region.

Sun exposure was measured in several ways, including by participant reports on how much time they spent in the sun during different periods of life starting from age 6, and also by more objective means, such as examination of the skin for sun damage (actinic skin damage) and measurements of skin pigment (melanin). The latitude and longitude of participants’ residence were also recorded as an indicator of ambient ultraviolet (UV) light. Vitamin D levels were measured by a blood sample taken at entry into the study.

The results show that higher recent or lifetime sun exposure and higher blood levels of vitamin D at study entry were independently linked with a reduced risk of CIS. The investigators reported that people with most evidence of skin damage from sun exposure were 60% less likely to develop a CIS than those with the least damage. People with the highest levels of vitamin D at entry also were less likely to have a CIS than those with the lowest levels. As reported in other parts of the world, this study confirmed a latitude effect in Australia. Taken together, differences in sun exposure, vitamin D levels, and skin type accounted for a 32.4% increase in CIS incidence from the low to high latitude regions of Australia.

Thursday, February 24, 2011

MS and Warm Weather Examined

A study linking warmer weather with problems with thinking tasks in people with MS is among thousands of studies that will be presented at the April meeting of the American Academy of Neurology. This study, conducted at the Kessler Foundation (West Orange, New Jersey) is based on work by postdoctoral fellows trained through the National MS Society's Mentor Based Fellowship in Rehabilitation Research award to Dr. John DeLuca. The National MS Society will provide a full summary of this and other important presentations after the meeting is concluded.