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Thursday, August 2, 2012

MS Symptom Management and the Urologic Implications of MS. Attend this education program on September 8th in Jacksonville, Fl.,

    Invites you to an informative MS education program

“Treatment Strategies, Symptom Management”
& the Urological Implications of Multiple Sclerosis

RSVP REQUIRED - please see information found below

Presented by:

Brian Steingo, MD – Director of the Fort Lauderdale MS Center’,
a member of the Board of Trustees for
 the National MS Society South Florida Chapter
 and a member of the National Medical Advisory Board
To present Emerging MS Therapies & Symptom Management


Ali Kasraeian MD– Kasraeian Urology, Jacksonville
To discuss the Urologic Implications of MS


Date: Saturday – September 8th, 2012
11:00am Registration
11:30am – Program Begins
With Complimentary Lunch and a Free Raffle

Location:  Marriott Jacksonville
4670 Salisbury Road · Jacksonville, Florida 32256

R.S.V.P. Required
To obtain a confirmation number:
or call: (954) 684-1683
PLEASE Provide us with your full name, email address and contact number

Program provided by an education grant from: 

Program Exhibit Displays provided by:


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a 501©(3) Not-For-Profit organization

MS Views and News provides information and education 
for those affected by Multiple Sclerosis 

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Unique cell type in multiple sclerosis

BETHESDA, Md., Aug. 1 (UPI) -- U.S. researchers said a type of immune cell that contributes to multiple sclerosis may help in the development of new drugs to treat autoimmune disorders.
Dr. Bibiana Bielekova, an investigator at the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, said the discovery helps define the effects of one of the newest drugs -- daclizumab -- under investigation for treating MS.

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Wednesday, August 1, 2012

Possible Clue to Progression of Multiple Sclerosis

ScienceDaily (July 31, 2012) —   Wayne State University School of Medicine researchers, working with colleagues in Canada, have found that one or more substances produced by a type of immune cell in people with multiple sclerosis (MS) may play a role in the disease's progression. The finding could lead to new targeted therapies for MS treatment.

B cells, said Robert Lisak, M.D., professor of neurology at Wayne State and lead author of the study, are a subset of lymphocytes (a type of circulating white blood cell) that mature to become plasma cells and produce immunoglobulins, proteins that serve as antibodies. The B cells appear to have other functions, including helping to regulate other lymphocytes, particularly T cells, and helping maintain normal immune function when healthy.

In patients with MS, the B cells appear to attack the brain and spinal cord, possibly because there are substances produced in the nervous system and the meninges -- the covering of the brain and spinal cord -- that attract them. Once within the meninges or central nervous system, Lisak said, the activated B cells secrete one or more substances that do not seem to be immunoglobulins but that damage oligodendrocytes, the cells that produce a protective substance called myelin.

The B cells appear to be more active in patients with MS, which may explain why they produce these toxic substances and, in part, why they are attracted to the meninges and the nervous system.

The researchers took B cells from the blood of seven patients with relapsing-remitting MS and from four healthy patients. They grew the cells in a medium, and after removing the cells from the culture collected material produced by the cells. After adding the material produced by the B cells, including the cells that produce myelin, to the brain cells of animal models, the scientists found significantly more oligodendrocytes from the MS group died when compared to material produced by the B cells from the healthy control group. The team also found differences in other brain cells that interact with oligodendrocytes in the brain.

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Oral Cannabis Reduces Muscle Stiffness in Patients With MS

Pauline Anderson

July 2012 — Compared with those taking a placebo, almost twice as many patients with multiple sclerosis (MS) prescribed an oral cannabis extract reported relief from muscle stiffness, a new study has found.
The cannabis agent also proved better at relieving symptoms of body pain and muscle spasm, and sleep disturbances.
Results of the phase 3 Multiple Sclerosis and Extract of Cannabis (MUSEC) study confirm the patient-rated benefits of cannabis on MS symptoms that were found in the earlier Cannabinoids in Multiple Sclerosis (CAMS) study, researchers say.
"The evidence behind using cannabinoids for symptom relief is pretty strong now, and the MUSEC study is another piece of evidence to support that view; in fact, it's probably the strongest evidence so far," said study lead author John Peter Zajicek, PhD, professor and chair of clinical neurology at the University of Plymouth, United Kingdom (UK).
he study was published online July 12 in the Journal of Neurology, Neurosurgery and Psychiatry.
Titration Phase
The double-blind trial conducted at 22 centers in the UK enrolled 279 patients with MS who were 18 to 64 years of age and had troublesome muscle stiffness. Patients were randomly assigned to receive a standardized oral cannabis extract (CE), which contained tetrahydrocannabinol (THC), or a matched placebo capsule.
Before the 10-week maintenance phase, the study included a pretreatment screening period and a dose titration phase. The starting dose for the CE was 2.5 mg (one capsule) twice daily, with doses individually titrated upward by 5 mg/day every 3 days for up to 12 days, with a maximum total daily dose of 25 mg.
At the end of the treatment period, researchers used an 11-point category rating scale (CRS) to evaluate patients' perceived change in muscle stiffness (a rating of 0 indicated very much better; 5 no difference, and 10 very much worse). This numerical tool is clinically relevant, is reproducible, and, compared with another commonly used scale — the Ashworth Scale, is a more patient-oriented measure of efficacy, according to the authors.
A similar rating scale was used to measure secondary outcomes that included perceived relief from body pain, muscle spasms, and sleep disturbances compared with pre-treatment.

The analysis of 277 patients found that the proportion of those who reported relief (0 to 3 on the CRS) was 29.4% in the cannabis group and 15.7% in the placebo group (odds ratio [OR], 2.26; 95% confidence interval [CI], 1.24 - 4.13; P = .004, 1-sided).
Cannabis Consistently Better
The study showed similar results in rates of relief for body pain, spasms, and sleep quality. At all visits (weeks 4, 8, and 12), rates of self-reported relief from these symptoms were consistently higher with CE than with placebo, and results were generally statistically significant (P < .025).
Responses to a number of MS-specific questionnaires supported these findings. Changes from baseline in symptoms such as effects of spasticity on activities of daily living, ability to walk, physical and psychological impact, and social functioning, as well as muscle stiffness, sleep quality, spasms, pain, and discomfort, were almost always in favor of the CE group.
"The MUSEC study looked at the symptoms of MS and found that from the patient perspective, all the endpoints were positive," said Dr. Zajicek.
At the end of the study, only 24.5% of CE participants were taking the 25.0 mg dose compared with 69.4% of placebo participants.
It is not surprising that central nervous system (CNS) symptoms such as disorientation and confusion occurred at a higher rate in the CE group (24.5% vs 7.5% for placebo), although most of these symptoms were mild. "Like all cannabis derivatives, if you take THC, which is a major active ingredient in the treatment drug, you can get a euphoria, a high, and a sort of clouding of cognition," said Dr. Zajicek.
The greatest between-group difference in adverse event rates was seen during the titration phase of the study, likely because of fast escalation of the dose to the maximum tolerated. "One of the problems of the study was that we pushed up the dose a bit high too quickly, so quite a few people dropped out," noted Dr. Zajicek. "But despite that, we still had evidence of good effects."
In total, 34 patients in the CE group (23.8%) and 20 in the placebo group (14.9%) discontinued study medication before the end of the study.
Researchers continue to search for an agent that does not have this cognitive side effect, but in the meantime, physicians can try to keep the dose low enough to get a benefit without causing this effect, said Dr. Zajicek. "The difficulty is to titrate it to the right dose for each person," he said.
Desperate Need
Although results of this study confirm the ability of cannabinoid agents to manage MS symptoms, it is probably more important to people with MS — and all neurodegenerative diseases — to have access to a drug that actually works on the disease itself, said Dr. Zajicek. "There's a desperate need for more treatments that help to slow down the course of these diseases."
The Cannabinoid Use in Progressive brain Disease (CUPID) trial, a 3-year trial of almost 500 patients with progressive MS, on which Dr. Zajicek was lead investigator, did investigate this aspect with this agent, but initial results, presented at the Association of British Neurologists' Annual Meeting in May of this year, showed that the THC agent was no better than placebo in reducing disease progression.
No significant effect was seen on disability, as measured by the Expanded Disability Status Scale, or on patient report, assessed using the Multiple Sclerosis Impact Scale 29.
However, results did show evidence of a significant effect for patients at lower levels of disability, said Dr. Zajicek. Overall, progression of disease in this group of progressive MS patients was less than expected, making measuring a drug effect more challenging.
CUPID was funded by the Medical Research Council (MRC) and was managed by the National Institute for Health Research (NIHR) on behalf of the MRC-NIHR partnership, the Multiple Sclerosis Society, and the Multiple Sclerosis Trust.
In a statement issued May 24, Doug Brown, MD, head of biomedical research at the MS Society, pointed out that currently no treatments are available for patients with progressive MS to slow or stop worsening disability.
"The MS Society is committed to supporting research in this area, and this was an important study for us to fund," he said. "While this study sadly suggests THC is ineffective at slowing the course of progressive MS, we will not stop our search for effective treatments. We are encouraged by the possibility shown by this study that THC may have potential benefits for some people with MS, and we welcome further investigation in this area."
Full results of the CUPID trial are expected later this year.
Still, Dr. Zajicek is convinced that drugs containing THC can work to curb progression of MS, and that future studies will further bear this out.
"There are multiple theoretical reasons for why this kind of drug should help," he said. "Firstly, it's anti-apoptotic, so it prevents cell death. Secondly, it reduces the release of excitatory neurotransmitters, so it reduces glutamate release, which is implicated with cell death in nerve cells. Thirdly, it's an antioxidant, so it reduces free radical damage. Then there are other theoretical reasons why it might be helpful, for example, it might interfere with protein folding, it has anti-inflammatory action, and it reduces migration of inflammatory cells."
Sacrificing Cognitive Function?
Invited to comment on this study, MS expert Lily Jung Henson, MD, neurologist and chief of staff at Issaquah Hospital, Swedish Medical Center, in Seattle, Washington, said it was "very nicely done."
However, she noted that the study was limited by the side effects that the authors discussed in the paper, and by the subjective nature of the rating scales used by researchers.
"I worry that patients will sacrifice cognitive functioning for pain relief," Dr. Jung Henson told Medscape Medical News. "I also wonder if the high dropout rate in the CE group is adequately explained."
Dr. Zajicek has received consultancy fees from IKF and Bayer-Schering. He has received funding from the Medical Research Council and from the National Institute for Health Research Efficacy and Mechanism Evaluation (EME) program to conduct studies using cannabinoids. He is a named inventor in two patents regarding cannabinoid use in multiple sclerosis. Dr. Jung Henson has disclosed no relevant financial relationships.
J Neurol Neurosurg Psychiatry. Published online July 12, 2012. Abstract

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Tuesday, July 31, 2012

Free Webinars Covering Financial Planning, Benefits, and Employment Strategies Specifically for People Living with Multiple Sclerosis Coming this Fall

National Disability Institute (NDI) and Acorda Therapeutics announced they will launch a free six-part webinar series on financial, tax and investment topics for people living with multiple sclerosis (MS), their families and care teams. The series will begin this September and be led by experts in tax, money management, benefits, employment, Social Security and other areas of personal finance. To register, visit   

In 2011, NDI completed an online survey of 3,000 people living with MS. Sixty-seven percent of respondents reported that their financial positions declined after their MS diagnosis, while nearly 74 percent reported that they did not use financial planning programs or strategies to manage or stabilize their finances.

“Our survey showed that whether people had an MS diagnosis early or later in life, there is a critical lack of information to help people with MS understand how to manage their money, plan for their financial futures, access favorable tax provisions, effectively utilize public benefits and keep working,” said Michael Morris, National Disability Institute’s Executive Director. “But there are many easy-to-use financial strategies and programs that can help people with MS achieve these goals, and the experts who lead each webinar will show them how to take steps toward greater economic independence and self-sufficiency.”

The webinar series will include six free online programs, each beginning at 3pm ET and lasting 90 minutes:

Ø  September 5, 2012 - Being Money Smart
Ø  September 26, 2012 - Prolonging Work - Supports To Keep You On The Job
Ø  October 17, 2012 - Social Security Disability Insurance – The Impact of Work on Benefits
Ø  November 7, 2012 - Supplemental Security Income – The Impact of Work on Benefits
Ø  November 28, 2012 - Favorable Tax Provisions for Individuals with Disabilities
Ø  December 19, 2012 - Saving and Investing – For Workers and For Individuals on Public Benefits

Programs include presentations and an opportunity for participants to ask questions. In 2011, when National Disability Institute and Acorda sponsored the first series of webinars on financial topics for people living with MS, more than 1,200 participants registered. Due to the strong demand, NDI and Acorda have expanded the program to cover more topics of interest in 2012.

The series is part of National Disability Institute’s Real Economic Impact (REI) Tour, an eight-year movement of more than 850 organizations in 100 cities across America that has helped more than 1.5 million people with disabilities take steps out poverty through access to financial education, asset building programs and free volunteer income tax assistance generating more than $1.3 billion in tax refunds. Registration for each webinar is free, but space is limited and advance registration is required and available at

“We at Acorda are very pleased to be sponsoring this groundbreaking educational webinar series for people living with MS, who often face financial challenges related to their disability and lack information that can help them protect their financial futures,” said Ron Cohen, M.D., president and CEO of Acorda Therapeutics. “Acorda’s corporate mission is to improve the lives of people affected by neurological diseases. While our focus is on developing therapies, support for programs on overall wellness, including financial and other topics, is also an important part of fulfilling this mission.”

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Which Foods Are Best for the Brain?

Diet is inextricably linked to conditions such as heart disease, obesity, and diabetes. However, what we consume also seems to have significant implications for the brain: Unhealthy diets may increase risk for psychiatric and neurologic conditions, such as depression and dementia, whereas healthy diets may be protective.

Based primarily on recent Medscape News coverage, the following slideshow collects some of the more prominent investigations on nutrition and the brain into a single resource to aid in counseling your patients.


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First Antibody Target in MS Discovered

Source: MS Foundation MSFYi News

A new paper published in the New England Journal of Medicine is the first research to identify a specific immune target in MS, a protein known as Kir4.1. Until this discovery, a specific antigen (a substance that evokes the production of one or more antibodies) in MS has not been found. In this study, the immune response to this target was seen in 47 percent of the people with MS.  

Autoantibodies are not the primary cause of MS, but as a secondary response, they may give researchers a better idea of what is causing the breakdown in the central nervous system of people with MS.

For this study, researchers from the Technical University of Munich in Germany obtained serum from 397 people with MS, 329 people with other neurological conditions, and 59 healthy serum donors.

When researchers tested the IgG levels in the blood of the people with MS, they found a very specific reaction to the protein KIR4.1. IgG stands for Immunoglobin G, which is the main antibody found in our blood. Antibodies are major components of the immune system. When something is presented in the body that is seen as foreign, like a virus or bacteria, the immune system goes after the invader, and the white blood cells produce an antibody. This antibody is like a footprint marker leading back to the "invader" – it can tell us what the body sees as foreign.

The researchers found there was an immune system response to KIR4.1 KIR4.1 is a potassium channel protein which is vitally important to myelination, neuronal plasticity, and the inflammatory response.   

"We found no significant differences in the prevalences or titers of serum anti-KIR4.1 antibodies among persons with a clinically isolated syndrome, those with relapsing-remitting multiple sclerosis, and those with progressive multiple sclerosis and observed no correlations between KIR4.1 antibody positivity and age, clinical characteristics, or characteristics of the cerebrospinal fluid," the authors wrote.

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CENTRAL NERVOUS SYSTEM Pain in MS - Seminar coming to Davie, Fl.

REGISTRATION (RSVP) REQUIRED to attend. Space is limited to the Patient plus One Guest
Send your rsvp to:

If You Have 'PAIN', with Your MS,this is a MUST ATTEND Program 

Sunday, July 29, 2012

UAB researcher gets $500,000 grant for MS study

BIRMINGHAM, Ala. (AP) — An Alabama biologist is being awarded a grant of more than $500,000 to fund his research on multiple sclerosis.

The Birmingham News reports ( ) that University of Alabama at Birmingham researcher Gordon Meares will use the money to study how cells in the brain and spinal cord may influence the immune system as he searches for clues to stopping the neurological disease.

The National Multiple Sclerosis Society announced the grant earlier this week. It says MS affects more than 2.1 million people worldwide, including more than 4,200 in Alabama.

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The Role of Sharing In Healing - an MS Patient's story

The Role of Sharing In Healing
Denise A. Coleman
June 3, 2012

I have lived with chronic illnesses since I was 13 years old and it wasn’t until relatively recently that I fully realized how important it is to have others in my life who share that same, or similar, illness.   After coming to terms with the fact that I had both Chronic Pain from a series of back surgeries, and Multiple Sclerosis (MS), I had to identify ways in which I could best live with them and move forward in a way that worked best for me.

I became an advocate with the National MS Society and the American Pain Foundation and was able to participate in various campaigns and programs around the country, strengthening the goals and objectives I had lain out in the program I formed in 2002, The Chronic Pain and MS Awareness Project. I had to take a step back a month ago when the American Pain Foundation announced its closing; I did a lot of my advocacy work through this organization and I didn’t know where to turn for the structure it provided.

This came during a time that I was also facing a significant set back in my own health, and this is what I would like to address today.  All of us have set backs in our lives; set backs when we are faced with disappointments and must make decisions as to how we will proceed or will we instead decide to go in another direction or not go anywhere at all.  This was where I found myself these past six months and I must say I did not know where I was going to go or whether I would continue in this work at all.  I can’t say that I am completely out of the woods, but once again I am making progress and looking forward to taking steps toward a full “recovery.”

Everyone is different, I know, and I will feel recovered when I am once again doing the things that make me feel like I am helping others reach their potential, for that helps me reach mine. Over the years being able to talk to others about the issues I am dealing with, whether it was physical, emotional or spiritual, has helped me.   This help can often be through a support group, a spiritual leader, and in my case it has often been through an email MS group that I have belonged to for the past 11 years—a group we called The Hang In There Group. 

The HITsters, our abbreviated name, is a group that has grown to as many as 18 women at times, who live all around the country, and represent various age groups, most of us in our 50s and 60s now, and we have witnessed each other go through various peaks and valleys of this disease over the years.  In sadness we shared the loss of several of our beloved members over the years, women who had become the dearest of friends even though for the most part we never met them in person.

We speak of them often and remember with love how brave they were through the years and how much they lost as their illness progressed and took more of their life from them.

I often wonder how I would have learned about the realities of MS, about how to deal with issues such as bladder leakage, numbness and gradual loss of mobility, and other symptoms without these dear women of Hang In There.

I don’t know if I have told the HITsters how important they have been to me over the years, or if they realize that the conversations about our symptoms and the impact MS has had on each of our lives, have helped me get through some of the most difficult days.  I live alone and often rely on these friends as I would rely on a roommate, and I value the opinions and advice they have given me over the years. 

I am writing this today because I know there are many of you who don’t have such a group and I encourage you to form one.  If you don’t belong to a Support Group that meets in person, reach out to your local chapter of the MS Society for help in identifying others who might be interested in forming such a group.  

I hope you each have many people you can confide in and from whom you can receive support and love.  I am fortunate that I have a large family and many friends who are there for me, but until I found the HITsters I didn’t know anyone who had MS, and I didn’t realize how important that was.  Reach out to others who share your illness and you will be surprised at how easy it is to share your thoughts and feelings, even those you never dreamed you would share with anyone.

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