New from the NMSS website

The following was found on the NMSS website about topics discussed at the recent Consortium of MS Centers annual meeting:

The core purpose of the Consortium of MS Centers (CMSC) is to maximize the ability of MS healthcare professionals to impact care of people who are affected by MS, thus improving their quality of life. The CMSC recently held its 25th annual meeting in Montreal, featuring more than 200 reports on research to improve care and quality of life of people with MS. Download the entire book of scientific abstracts from the CMSC meeting (PDF). Here is a small sample of these reports:
Exercise boosts cognitive function: Cognitive changes are common in people with MS -- as many as half of people with MS will develop problems with cognition. Brian Sandroff and colleagues (University of Illinois, Urbana) enrolled 42 people with MS who wore accelerometers for seven days, and were administered tests of cognitive function. More physical activity was associated with faster information processing speeds, independent of a person’s disability status. In a similar effort, the National MS Society is currently funding a trial comparing the ability of aerobic exercise versus a stretching program to improve cognitive performance. (Abstract #S22)
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. (Abstract #P18)
Wii™ for improving balance: Balance can be difficult to maintain for people with MS. Erin Korsbrek, MSc, and colleagues (University of Calgary) enrolled 18 people with MS in a study using Nintendo Wii Fit Plus three times per week for six weeks. Functional balance improved, and measures of fatigue and other symptoms remained stable, indicating no adverse effects. Coauthor Maureen Dunn, PhD (Hope College, Holland, MI) is currently funded by the National MS Society to conduct a 12-week trial to determine whether Wii is an effective balance rehabilitation tool for people with MS. (Abstract #P21)
Resveratrol: Negative preclinical results: The CMSC meeting includes laboratory studies as well. Previous research has suggested that resveratrol, a component of red wine, enhances the activity of a molecule (SIRT1) that might help to preserve nerve fibers, and it has been shown in several studies to decrease the severity of the MS-like disease EAE in mice. Fumitaka Soto, PhD (Louisiana State University, Shreveport) and colleagues reported that resveratrol actually worsened EAE in mice, causing severe damage. Further research will be needed to sort out this question. (Abstract #S7)
Evaluating relationship education: “Relationship Matters: A Program for Couples Living with MS” was developed by the National MS Society to help couples affected by MS to strengthen their partnerships and minimize the impact of MS on their lives. Couples receive eight hours of programming via “teleclasses” or in-person workshops. Kimberly Koch, MPA (National MS Society) and colleagues looked at a sample of more than 1,000 participants, and found significant increases in relationship satisfaction, along with clinically significant improvement in mental health. Funding for this project was provided by the United States Department of Health and Human Services, Administration for Children and Families, Grant: 90FE0090.
Read more about this program. (Abstract #S8)
Risk tolerance for MS therapies: Recently, several more effective, but more risky, therapies have become available to treat MS, and more are under development. Society grantee Robert Fox, MD (Cleveland Clinic Foundation) and colleagues administered a web-based questionnaire on risk tolerance to more than 10,000 people enrolled in the North American Research Committee on MS (NARCOMS) registry. A total of 5,446 people completed the questionnaire, and the results showed that three factors were associated with increased tolerance for risky therapies: increased disability, male gender, and not currently being on an MS treatment. These results can help to guide discussions between clinicians and people with MS. (Abstract S84)
Psychosocial factors related to smoking: Research suggests that smoking may increase the risk of developing MS and may speed disease progression. Joseph Ostroff and colleagues (State University of New York, Buffalo) examined factors that distinguished smokers from nonsmokers in a sample of 1300 people with MS whose information was recorded in the New York State MS Consortium registry. Smokers were significantly more likely to be single or divorced, and to experience higher levels of pain, fatigue, tension, and loneliness. Read more about healthy living with MS. (Abstract #S91)
Air travel accessibility: The challenges of traveling with a disability were discussed in focus groups and in visits to the local airport by a team including the St. Louis VA MS Center and Spinal Cord Injury Service, the Gateway Chapter of the National MS Society, Paralyzed Veterans of America, the St. Louis Americans with Disabilities Act (ADA) coordinator, and local airport, airline, and Travel Security Administration staff. Targets for accessibility improvement were identified, including the need to train airport staff regarding wheelchair mechanics and batteries; the need to provide opportunities for travelers with disabilities to do “dry runs” to increase familiarity; and the need to improve signage to indicate accessible routes to baggage claim. Read more about travel tips for people with MS. (Abstract #S124)
Educating physical therapy students about MS: Angela Rosenberg, PT, DrPH (University of North Carolina, Chapel Hill) and colleagues, including Kaye Gooch of the Society’s Eastern North Carolina Chapter, presented a program developed by the university and chapter to educate physical therapists in the management of the neurologic and psychosocial needs of people with MS. Evaluations of the program indicate increases in MS-specific knowledge, and the team hopes this two-year program will serve as a model for other universities. Read more about education opportunities for physical and occupational therapists provided by the National MS Society. (Abstract #S133)
Breathing problems during sleep: Sleep-disordered breathing is a problem of respiration that occurs during sleep, such as sleep apnea. Tiffany Braley, MD, a Sylvia Lawry Physician Fellow of the National MS Society, explored the occurrence of these disorders in 48 people with MS and 84 controls without MS. The results suggest that people with MS and disease activity in the brainstem (the lower extension of the brain where it connects to the spinal cord) had a predisposition for sleep-disordered breathing. People with these disorders reported fatigue, lack of energy, or tiredness to be their most problematic symptom, as opposed to excessive daytime sleepiness. Read more about sleep disorders in MS. (Abstract #S155)
Click here to view the entire book of scientific abstracts from the CMSC meeting (PDF).

Interesting news as always!  Looks like I really need to be better about exercising - need to keep my cognitive functioning up!  My husband and I used to have a Wii, but we sold it when we stopped using it; now I kind of wish I still had it to improve my balance.  Surely, there are other things I can do to help improve balance.

A Little Bit of Everything

Check out the NMSS blog

Then, read about the latest on Jabecca Walk  (See also Getting Involved and an MS Competition)

And now, an update on me; I know I don't talk about myself very often on here but it is mostly because I haven't really had anything MS-related to report.  I have been doing very well lately, which has been great!  The weather in the Midwest has been consistently in the triple digits, so I keep waiting for the heat to affect me as it did last summer.  So far, however, the heat has not bothered me!  Part of that may be because I am not going out into the heat quite as much since I know it could become an issue and I am careful not to "overdo" things when I do go out into the heat for longer periods of time.  Despite my conscious efforts, I still believe that something is working for me (Copaxone, vitamins, or a combination of everything) and I am very excited about that.  Except for taking my shot everyday and the bracelets on my arm that remind me, I really haven't noticed that I even have MS lately.  THAT is a great thing!  I am hoping that this keeps up, but am continually waiting for the floor to drop out beneath me.  I will keep you posted, but know that if I am not posting about my "condition," it is because I am doing well!

In research news, the latest MSIF mailer I received reported that a recent study "examined the relationship between self-reported relapses and levels of sports activity in 632 patients with MS. The study showed no association between sports activity and clinical relapses."

 MSAA has produced a new publication, Solutions for Wellness.  It can be viewed by clicking here.

 That is all I have for today; stay well!

CCSVI Research Progress Report

I received an email today about the NMSS's ongoing research related to CCSVI.  The following article is posted on the NMSS's website:

The first-year progress reports from seven multi-disciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS indicate that they are on track to provide essential data and critical analysis as these two-year projects move toward their completion. These studies were launched on July 1, 2010 with a more than $ 2.4 million commitment from the MS Society of Canada and the National MS Society (USA).
The research teams have already recruited a broad spectrum of people with MS and others to build understanding of who may be affected by CCSVI. In addition they are refining CCSVI imaging methods for accuracy and consistency in order to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process.
Representatives of each of the seven funded teams are part of the Canadian Institutes of Health Research (CIHR)’s Scientific Expert Working Group. Following a meeting of the working group in June 2011, the Canadian Federal Minister of Health, the Honourable Leona Aglukkaq, announced a Phase I/II interventional clinical trial on CCSVI. The working group will provide leadership and advice in the drafting of the terms of reference for the Phase I/II clinical trials in Canada, and will continue to monitor and analyze the data from the seven studies and other studies related to CCSVI and MS around the world.

Regarding the seven funded teams, all have received approval for their studies from the required Institutional Review Boards in the U.S. or the Research Ethics Board in Canada, a first step established by regulatory authorities to protect human subjects involved in research projects. (Read more about steps involved in conducting clinical research.)
Already more than 486 people have undergone scanning with various imaging technologies being used by the studies, including the Doppler ultrasound technology originally used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain, and clinical measures.
Because the studies employ rigorous blinding and controls designed to collect objective and comprehensive data, the full results of the ongoing research will be available only after completion of the studies which will involve more than 1300 people representing a spectrum of MS types, severities and durations, as well as individuals with other disease types and healthy controls. In the meantime, several teams are planning to present preliminary results at medical meetings later this year.
“We are pleased that this important work investigating the link between CCSVI and MS is advancing quickly,” notes Dr. Tim Coetzee, chief research officer at the National MS Society. “Results from these comprehensive studies will help inform important next steps.”
Yves Savoie, President and chief executive officer of the MS Society of Canada concurs, “The CIHR’s Scientific Expert Working Group, who will provide leadership and advice in the drafting of the terms of reference for the Phase I/II clinical trials in Canada, will continue to monitor and analyze the data from these studies and other studies related to CCSVI and MS around the world. We are heartened to be moving closer to more definitive answers about CCSVI and MS.”
Details: The funded investigators, who are drawn from a broad range of disciplines ranging from MS neurology, vascular surgery and interventional radiology, report progress in establishing standardized protocols, recruiting and scanning participants and in the development of plans for sharing their findings, as summarized below.
• Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario:
To determine whether signs of impaired vein drainage might be present early in the MS disease course, Dr. Banwell’s team received approval from the Research Ethics Board and then began enrolling children and teenagers who have MS, and healthy controls of the same age. They are seeking venous abnormalities using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound. Unlike adults with MS, children are unlikely to have age-related changes in blood vessels, and are less likely to have adult health conditions such as high blood pressure or heart disease, which might otherwise complicate findings. The team’s ultrasound team received training in Dr. Zamboni’s original techniques from the Buffalo Neuroimaging Analysis Center, and they have created ultrasound and brain imaging procedures suited to explore venous drainage in children. Dr. Banwell’s team reports that recruitment is going well, and that they plan to analyze findings only after all 90 participants have undergoing the testing. Read details of Dr. Banwell’s original study plans.
• Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta:
Once her team received Research Ethics Board approval, they began recruiting a cross-section of people with MS who would be compared with those affected by other neurological diseases or healthy volunteers. They have three dedicated ultrasound technologists who have been trained to do scanning as originally done by Dr. Zamboni, and they have refined their scanning protocol. The team is planning to repeat scans on a subset of participants who had been scanned before they made method changes, which will allow them to compare the sensitivity of results pre- and post-training. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3 Tesla (3T) MRI scanner (twice as strong as standard clinical MRI), and they have expanded their MRI team to include two additional, experienced members. The 3T machine went online in March 2011 and it is now being used to perform MR venography scans to compare against the ultrasound tests. Read details of this team’s original study plans.
• Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison:
His team is now actively recruiting participants to undergo MR venography and ultrasound techniques originally used by Dr. Zamboni to investigate CCSVI in people with early and later stages of MS, controls with other conditions and healthy volunteers, now that they have received approval of the study from the Institutional Review Board. Their ultrasound expert has received training in the Zamboni techniques. The team has refined its MR venography protocol to account for variations in blood flow that occur with breathing and heartbeats. They have determined that they will use a relatively new contrast agent or dye that will permit high-quality images of the veins in the head and neck and for measuring blood flow in the brain. This will enable the entire MRI/MRV exam to be completed with one time-saving injection instead of two. They have also standardized locations along the length of veins where they take blood flow measurements because they have found large differences in both anatomy and size of head and neck veins. The team has submitted a meeting abstract reporting on their protocol development for consideration at the International Magnetic Resonance Angiography Workshop to be held September 25-28, 2011 in Calgary, Alberta, Canada. Read details of this team’s original study plans.
• Dr. Robert Fox, Cleveland Clinic Foundation, Cleveland:
After his team received IRB approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS (CIS) and comparison groups, they began recruiting and scanning participants. The ultrasound team, which underwent training in the technique originally used by Dr. Zamboni, found several aspects of the published methodology ambiguous, and they have standardized the protocol and analysis to achieve consistent results.
They shared their solutions to these methodological challenges in a poster presented at the American Academy of Neurology’s annual meeting in April 2011 (Abstract P01.263). The poster outlined physiological and technical factors that can complicate screening for vein blockages using ultrasound, including that heartbeat irregularities, stages of breathing, head position and pressure applied by the operator could alter results; and that the state of hydration of the subject (whether they drank adequate amounts of fluids) could impact results of several of the criteria used to determine CCSVI. They concluded that these complications may help explain the mixed results reported thus far related to CCSVI and MS, and they have added to their aims a study designed to evaluate the impact of hydration on CCSVI assessments.
Dr. Fox’s team has also gathered autopsy specimens of venous tissue from 9 MS tissue donors and 6 donors who did not have MS. The team first had to develop and standardize techniques for studying these specimens for signs of CCSVI. They are analyzing their data and have submitted abstracts reporting preliminary findings related to this pathology study and their scanning results for consideration at the international ECTRIMS (European Committee for Treatment and Research in MS) meeting in October 2011. Read details of this team’s original study plans.
• Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario:
His team obtained Research Ethics Board approval after negotiating details over elements of the informed consent form used to explain the study’s procedures and potential outcomes to participants. The team has been conducting the first phase of scanning, using MRI and MR venography, in people without MS, which will be used to compare with various scans in people with MS. Three team members have been trained using the ultrasound techniques originally used by Dr. Zamboni, and they are on track recruiting more participants for the study. Dr. Torres expects to finalize phase 1 of the study by the end of the summer and then will move on to phase 2, which involves people with MS and other controls. Read details of this team’s original study plans.
• Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan:
After both sites received Research Ethics Board approval they began to recruit, they have scanned a significant number of participants, and the level of interest in the MS community remains high. Their ultrasound technologists were trained by Dr. Zamboni, and they are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. After the radiologists at both sites met in February 2011 to ensure the consistency of their protocols, they did a second wave of recruitment and hope to finish all testing before the end of 2011. Read details of their original study plans.
• Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: After receiving IRB approval, the team began recruiting participants, and their neurosonographer received intensive training for intracranial and extracranial ultrasound scanning techniques. The team has already scanned a significant number of participants, which include people with different types of MS, people with other conditions, and people with no known health problems. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. Dr. Wolinsky’s team continues to encounter difficulty in recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The executive committee that oversees this study has agreed with the team’s plan to continue aggressively recruit other controls, while at the same time increasing the number of MS participants. In some cases they have also found that some participants who were contacted to go into the next phase of scanning informed the investigators that they had gotten the venoplasty procedure, which made them ineligible to continue in the study. Read details of this team’s original study plans.
Going Forward: These seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The projects were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. (Read more)
At this one-year milepost the investigators are making significant progress on their overall two-year study goals. The teams are making plans for sharing preliminary results at upcoming medical meetings, and have demonstrated a clear willingness to share technical advice so that the projects can move forward as smoothly and quickly as possible. Their results will help guide the development of a phase I/II clinical trial recently announced by the Canadian Federal Minister of Health to test whether treating vein blockages may be safe and effective in treating people with MS.
The next update on the work of the seven grantees will be reported in six months.

Very interesting!  Sorry for the lengthy post, but I didn't want to leave anything out on this.

More on Vitamin D and Other Interesting News

The following is from a Multiple Sclerosis Foundation email:

Research Examines Cellular Events that May Lead to MS

While it has often been suspected that MS is the result of inherent risk factors ignited by an environmental trigger, a group of researchers from the UC Irvine MS Research Center have recently published data that points to the possible combination of events that causes the disease, and includes a theory that defines the importance of Vitamin D.

Using blood samples from about 13,000 people, study author Michael Demetriou, M.D., and colleagues identified the way environmental factors (including metabolism and vitamin D3 obtained through either sunlight exposure or diet) interact with four genes to affect how specific sugars are added to proteins regulating the disease. Those genes are interleukin-7 receptor-alpha, interleukin-2 receptor-alpha, MGAT1, and CTLA-4.

Earlier work on mice by Demetriou revealed that changes in the addition of these specific sugars to proteins creates a spontaneous MS-like disease. They also found that N-acetylglucosamine (GlcNAc), a dietary supplement and simple sugar related to glucosamine, is able to suppress this process.

The current research shows that both vitamin D3 and GlcNAc can reverse the effects of four human MS genetic factors and restore the normal addition of sugars to proteins. "This suggests that oral vitamin D3 and GlcNAc may serve as the first therapy for MS that directly targets an underlying defect promoting disease," Demetriou said.

 Next, more research to show that certain viruses can increase one's risk of developing MS.

Study Suggests Shingles Nearly Quadruples MS Risk in Asia 

A shingles outbreak can nearly quadruple the risk of developing MS in the following year, but the overall risks remain small, according to research conducted in China. Viruses are thought to play a role in triggering MS, and herpes zoster virus, which causes shingles, is one of the viruses previously implicated. But the new results reported in the Journal of Infectious Diseases are the first to quantify the risk.

Shingles is an exceptionally painful, blistering skin rash caused by the herpes zoster virus, the same virus that causes chickenpox. In many patients who suffer chickenpox in childhood, the virus is not eradicated from the body, but lies dormant for years or decades, until it is prompted to start replicating by environmental conditions, stress or infectious diseases.

Epidemiologist Herng-Ching Lin of Taipei Medical University in Taiwan and colleagues studied 315,550 adults with herpes zoster and a control group of 946,650 healthy controls, tracking them for a year to monitor for the development of MS. After adjusting for family income and geographic region,both of which are known to play a role in MS, the researchers found that the group with herpes zoster outbreaks was 3.96 times more likely to develop MS than the control group. On average, MS developed about 100 days after the shingles episode.

The authors noted, however, that MS has a lower incidence in Asian populations than in Western ones, so it may be difficult to extrapolate their findings to the rest of the world.

Could cinnamon be the answer???  If so, I think I could add more cinnamon to my diet :)

Cinnamon Investigated as MS Prevention Treatment

Could cinnamon offer a non-toxic way to stop myelin sheath destruction from MS? Preliminary animal studies have suggested so. Now scientists may be closer to finding out the answer.

Rush University Medical Center has received a $750,000 grant from the National Institutes of Health (NIH) to see if the common household spice used for centuries to ease inflammatory conditions such as arthritis and sore throat, can also inhibit pro-inflammatory molecules that trigger MS.

Kalipada Pahan, Ph.D., a professor of neurology at Rush and principal investigator of the study, says the grant will be used to conduct further studies in mice.

Glial cell activation in the brain has been implicated in the development of a variety of neurodegenerative diseases such as Alzheimer's disease, Parkinson's disease, and MS. Activated glial cells accumulate and secrete different neurotoxin factors that cause various autoimmune responses that lead to brain injury.

"These autoimmune reactions in the brain ultimately kill oligodendrocytes, which are a certain type of brain cell that protects the nerve cells and myelin sheath," said Pahan. "However, cinnamon has an anti-inflammatory property to counteract and inhibit the glial activation that causes brain cell death."

Bad news for Cladribine:

Cladribine Approval Bid Halted

Merck Germany has announced that it is abandoning current efforts to gain approval of the prescription Cladribine, anticipating the drug would never pass global clinical trials. Cladribine was in the pipeline as another possible oral medication for treatment of relapsing-remitting MS.

Merck said it intends to withdraw applications from regulatory review in the limited number of countries where procedures are ongoing.

The decision was made after discussing cladribine with international organizations, including the U.S. Food and Drug Administration (FDA). The plan calls for current clinical trials to be completed for the sake of participants and to add knowledge for the scientific community.

In Australia and Russia, where cladribine tablets are approved and available under the trade name Movectro™, Merck said it will withdraw the product from the market and will discuss the timelines and other details with the local regulatory agencies to determine the best solutions for people currently on Movectro therapy.

It will be interesting to see if Merck develops a new oral therapy. 

I hope everyone learned something, I know I did.  I will continue to take Vitamin D supplements and I may have to start adding cinnamon to more foods!

Genetics and MS

From the NMSS website:

Studying human cells isolated in the laboratory, researchers reveal a novel interaction between two genes that influence susceptibility to developing MS, certain environmental factors, and a chemical process (called N-glycosylation) that modifies the structure of molecules, which together may contribute to our understanding of how complex interactions lead to the development of MS. Michael Demetriou, MD, PhD (University of California, Irvine) and colleagues have published these findings in Nature Communications (May 31, 2011, Volume 2, Article #334). The team was funded in part by the National MS Society.
Background: The cause of MS is still not known, but scientists believe that a combination of several factors may be involved to trigger the immune attack that is launched on the brain and spinal cord. While MS is not directly inherited, genes are known to make people susceptible to developing the disease. Researchers also are working to understand how MS gene variations may interact with some environmental triggers that have been linked to MS, such as viral infection, cigarette smoking and low levels of vitamin D/sunlight to increase the risk of MS.
Michael Demetriou, MD, PhD, has previously shown that changes in the addition of specific sugars to proteins involved in the MS attack (N-glycosylation) trigger a spontaneous MS-like disease in mice, which could be suppressed by interfering with the process with a dietary supplement. The current study aimed at translating this finding to the development of human disease.
The Study: In this study, Dr. Demetriou’s team examined DNA samples from about 13,000 people with MS or controls. They looked at how four previously reported susceptibility genes that are involved in immune system activities (interleukin-7 receptor-alpha, interleukin-2 receptor-alpha, MGAT1 and CTLA-4) affect N-glycosylation. Then they examined how a particular environmental factor such as vitamin D affected this interaction.
The results suggest that these genes do alter N-glycosylation in cells isolated in the laboratory, but that both vitamin D and a dietary supplement called N-acetylglucosamine (GlcNAc) were able to suppress this process in cells and in mouse models of MS.
Comment: This study provides new evidence for a link between genes and the environment in the development of MS. However, additional research is needed before it is possible to generalize these findings to all cases of MS, since this study focused on just a few of the many genetic susceptibility factors linked to MS. More research is also needed to determine whether administering vitamin D and G1cNAc will be helpful in MS. A new clinical trial getting underway with support from the National MS Society will test the ability of vitamin D supplements to alter MS disease activity. 

This is an area that interests me.  MS does not "run" in my family (I am aware of one other person in my family with MS who is a distant relative), but the susceptibility of developing MS being genetic scares me because I would like to have children, but I worry that they could develop MS because they will have a higher probability of developing MS because of their genetic disposition.  Scary!  I am, however, glad to continue to read that MS is not 100% genetic.

Estriol Study

From the NMSS website:

Summary: The National MS Society is funding a team of investigators at 15 medical centers to conduct a two-year, controlled clinical trial of an estrogen (estriol) added to standard therapy to treat MS. Investigators administer either oral estriol along with Copaxone^® (glatiramer acetate, Teva Pharmaceutical Industries Ltd.) or Copaxone plus inactive placebo to 175 women with relapsing-remitting MS. If successful, this clinical trial could lay the groundwork for a larger, definitive trial that could lead to a new treatment option for women with MS, an option that would be a pill, not an injection. Importantly, the exclusion criteria for the study have recently changed, such that patients previously treated with an interferon or Copaxone will no longer be excluded. 
Fifteen Centers Recruiting Patients: The estriol trial is taking place at 15 medical centers across the U.S. Women between 18-50 who are diagnosed with relapsing remitting MS and are interested in participating in this clinical trial should contact the nearest site to discuss their eligibility:

Institution	Coordinator	Phone
UCLA; Dr. Barbara Giesser	Mike Montag	310-794-4020
Washington University, St. Louis; Dr. Anne Cross	Debbie Kemp	314-362-3839
UMDNJ, New Brunswick; Dr. Suhayl Dhib-Jalbut	Yaritza Rosario	732-235-7099
OSU, Columbus; Dr. Michael Racke	Andrea Schertzer	614-366-3757
University of Chicago; Dr. Anthony Reder	Mildred Valentine	773-702-9812
University of Utah, Salt Lake; Dr. John Rose	Julia Klein	801-582-1565 x2014
U. of Texas Southwestern, Dallas; Dr. A. Courtney	Gina Remington	214-645-0560
Johns Hopkins U., Baltimore; Dr. John Ratchford	E'tona Ford	410-502-2489
University of Colorado, Aurora; Dr. John Corboy	Haley Steinert	303-724-4172
U. of New Mexico, Albuquerque; Dr. Corey Ford	Lori Bachert	505-272-8905
U. of Pennsylvania, Philadelphia; Dr. Dina Jacobs	Vanessa Zimmerman	215-349-5162
Dartmouth Med. Sch., Lebanon, NH; Dr. E. Lallana	Laurie Rizzo	603-653-9947
U. of Kansas, Kansas City; Dr. Sharon Lynch	Kelly Dickerson	913-588-0080
U. of Minnesota, Minneapolis; Dr. Gareth Parry	Susan Rolandelli	612-624-5978
Mayo Clinic Arizona, Scottsdale; Dr. D. Wingerchuk	Irene Galasky	480-301-6104

This study, costing more than $5 million, is being funded by the National MS Society – through the support of the Southern California Chapter and other chapters and private donors – and the National Institute of Neurological Disorders and Stroke. Adeona Pharmaceuticals is providing drug for the trial.
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 explored this lead in mice with MS-like disease, and later, with National MS Society support, Dr. Voskuhl conducted a small, early-phase trial of estriol in 12 women with MS. Results in mice showed that estriol treatment was indeed protective. Results in the pilot trial showed that estriol treatment decreased disease activity in women with relapsing-remitting MS.
According to Dr. Voskuhl, the trial principle investigator, in using estriol they “aim to simulate some of the disease protection offered by pregnancy. We are very enthusiastic about this new agent since it has decades of known safety and since it will be given as a pill, not a shot.” She further states, "Estriol treatment also has the potential to be more potent in halting disability in MS, since estrogens have been shown in animal models to be not only anti-inflammatory, but also to directly reduce brain injury."
Trial Details/Eligibility: The two-year study is a double-blind, placebo-controlled trial that will take place at 15 sites in the U.S. (listed above). Investigators will administer estriol in pill form to women between the ages of 18-50 who have a diagnosis of relapsing-remitting MS. The oral treatment will be given in combination with subcutaneously injected Copaxone, a standard treatment for MS, for 2 years. The team is evaluating effects of the treatment combination on relapse rates and several clinical and magnetic resonance imaging measures of disability progression.
Contact: For more information, contact the study sites listed above, or please see the study’s listing (NCT00451204) on ClinicalTrials.gov.

If you live in/near one of the above places and are interested in volunteering, be sure to contact the appropriate person ASAP!  This was placed on the NMSS website on 6/10/11 and it didn't say what the deadline is.  I think this is very exciting; I think Estriol has promise based on the previous research I have done regarding Estriol and MS (see Future Therapies Continued (BG-12 & Estriol)).

Swim for MS

I got the following in an email from the Multiple Sclerosis Association of America:

Beat the heat this summer by diving into action with MSAA's coolest volunteer initiative: Swim for MS!

Swim for MS is a great way to incorporate everyone's interest in fun at the pool with a desire to help the MS community. Anyone who has access to a pool can participate and it is ideal for swimmers of all abilities.

We encourage you to discover just how easy and rewarding Swim for MS can be.

     * Be inspired by Laurieann's "Hart to Heart" personal challenge.

     * Younger swimmers may seek to beat Joshua's record of 500 cannonballs this summer.

     * Have a group of friends who want to help? Read about the "Sharks" Swim for MS.

Act now to register to Swim for MS this summer

Please take a moment to tell your friends and family about Swim for MS.

     * Forward this email to friends and family

     * Tweet Swim for MS

     * Post to your Facebook page

Please direct everyone to msassociation.org/SwimforMS

I encourage you to contact me directly with any questions you may have about Swim for MS.

Thank you for your immediate response to this email. In doing so you are helping the Multiple Sclerosis Association of America (MSAA) fulfill its mission to enrich the quality of life for everyone affected by multiple sclerosis (MS).

Happy swimming!

Malcolm Friend
Director of National Volunteer Services
Multiple Sclerosis Association of America
e: Malcolm@MSAssociation.org
p: (800) 532-7667, ext. 117

Swim for MS
msassociation.org/SwimforMS

If you are a swimmer or have children/grandchildren that will be spending the summer at the pool, maybe you/they would be interested in swimming for MS!  Check it out!

Good Cause

This is unrelated to MS, but it is a good cause and I wanted to give everyone the opportunity to help.

A girl that I went to High School with is pregnant, but they recently learned that the fetus has CDH (Congenital Diaphragmatic Hernia).  Learn more about CDH at these sites:
http://fetus.ucsfmedicalcenter.org/cdh/

http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/congenital-diaphragmatic-hernia-cdh.html

This is going to result in special treatments and will put a financial strain on the family.  Because of this, another girl that I went to high school with has decided to donate her commissions (25% of sales) from her Scentsy sales to the family.  To buy Scentsy products that will help this family, please visit https://amandamorris.scentsy.us/Home, then click on "Buy from party" by the "Baby Jordan Fundraiser" party. 

Also, to learn more about the family's journey, visit their blog:
http://www.jordansstory.com/p/about-jordan.html

I think it is wonderful that people are so willing to help others!  Please consider giving.  Thanks!

Stress and MS

I cannot believe that my last post was 9 days ago (I think that is the longest I have gone without posting since starting this blog)!  Last weekend, my family got together to celebrate my brother's wedding, I welcomed a new sister into the family, and we all had a great time!  This work week has been VERY busy, plus I played softball Tuesday evening and I played volleyball Thursday evening.  The evenings that I was at home, all I felt like doing was relaxing, so alas I am now 9 days since my last post and a little disappointed that it has taken me so long to get back to the blog.  That is life though!

With the stressors of life in full force, I was happy to learn that stress does not cause MS.  This article came to me through an email from the National MS Society:

Study: No Link Found Between Stess and Development of Multiple Sclerosis
A new study finds that stress does not appear to increase a person’s risk of developing MS. The study, published in the May 31, 2011 issue of Neurology, focused on two large groups of women involved in the Nurses’ Health Study, involving hundreds of thousands of female nurses followed over time. The nurses were asked to report on general stress at home and at work, as well as recall physical and sexual abuse in childhood and as teenagers. The investigators, led by Trond Riise, PhD (University of Bergen, Norway), concluded that their results do not support a major role of stress in the development of MS, but that more research is needed to definitely exclude stress as a potential risk factor for developing MS.
Background: Some studies have suggested that stress may be linked to MS exacerbations, or attacks, but there is still no conclusive evidence that links the two. There have been a few previous studies linking stressful events with the onset of MS, but there has not been definite evidence that stress could cause MS. This is the question posed in this study.
Details: With funding from the National Institutes of Health, Dr. Riise and collaborators focused on two Nurses’ Health Study groups, involving female nurses in the U.S. followed over time: the NHS1 included 121,700 nurses between the ages of 30-55 who have been followed from 1976. NHS2 included 116,671 nurses between the ages of 25-42 who have been followed from 1989. The participants had responded to past questionnaires about their history of stressful events. Later, a small proportion of the nurses developed MS, and the investigators were able to compare the answers about stressors between those who developed MS and those who did not.
The investigators found that those who later developed MS did not respond significantly different than those who did not develop MS in terms of their histories of general levels of stress or physical or sexual abuse. They accounted for other variables, such as smoking, that have been linked to increasing the risk of developing MS. The authors conclude that this study does not support a major role for stress in the development of MS, but suggest that further research is needed to definitely exclude stress as a risk factor for MS.

This was bittersweet to learn.  If they had found that stress causes MS, then at least I would have something to blame (I have an extremely Type A personaility and therefore am stressed much more often than not, plus law school and the legal profession do not held my stress level).  However, I would have been pretty frustrated to learn that stress causes MS, therefore this revelation is a little bittersweet.

I hope everyone reading is well!   I will try not to let so much time pass between this post and the next.

Heat Shmeat!

This is my "the heat isn't going to get to me" post! 

Last summer, I couldn't play on my work's co-ed softball team because I was in the early stages of the disease.  I had not been diagnosed and we were only speculating as to what was causing my numbness and tingling.  Since the symptoms were mostly in my legs and feet, there was talk about the symptoms being caused by a pinched nerve.  When the doctor thinks you may have a pinched nerve, they tell you to avoid activities such as softball and the like.  So, due to my symptoms and not knowing what was wrong with me, I was unable to partake in the softball festivities.  I did, however, go to games to support the team.

Fast forward to this summer - our first work softball game was this week and in close to 100 degree heat, I went out and played!  Even better, I did not experience any numbness or tingling all evening!  It was very exciting!

As most of you probably know, I have been playing volleyball for the past few months and have not had any problems with that, but the volleyball has been played indoors in air-conditioned buildings.  In the past, I have noticed symptoms most regularly when my core temperature goes up.  So, I was a little worried about how the heat would affect me on the softball field.  I am proud to report no problems and I am hopeful that the rest of the season will go over as well as the first game!