I intend this blog to be a mixture of my personal experiences with Multiple Sclerosis (MS) and news related to MS. Hopefully, I can shed an optimistic light on MS even though it is difficult to be an optimist living with MS.

Thursday, June 30, 2011

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:

UCLA; Dr. Barbara GiesserMike Montag310-794-4020
Washington University, St. Louis; Dr. Anne CrossDebbie Kemp314-362-3839
UMDNJ, New Brunswick; Dr. Suhayl Dhib-JalbutYaritza Rosario732-235-7099
OSU, Columbus; Dr. Michael RackeAndrea Schertzer614-366-3757
University of Chicago; Dr. Anthony RederMildred Valentine773-702-9812
University of Utah, Salt Lake; Dr. John RoseJulia Klein801-582-1565 x2014
U. of Texas Southwestern, Dallas; Dr. A. CourtneyGina Remington214-645-0560
Johns Hopkins U., Baltimore; Dr. John RatchfordE'tona Ford410-502-2489
University of Colorado, Aurora; Dr. John CorboyHaley Steinert303-724-4172
U. of New Mexico, Albuquerque; Dr. Corey FordLori Bachert505-272-8905
U. of Pennsylvania, Philadelphia; Dr. Dina JacobsVanessa Zimmerman215-349-5162
Dartmouth Med. Sch., Lebanon, NH; Dr. E. LallanaLaurie Rizzo603-653-9947
U. of Kansas, Kansas City; Dr. Sharon LynchKelly Dickerson913-588-0080
U. of Minnesota, Minneapolis; Dr. Gareth ParrySusan Rolandelli612-624-5978
Mayo Clinic Arizona, Scottsdale; Dr. D. WingerchukIrene Galasky480-301-6104

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)).

Tuesday, June 28, 2011

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

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!

Wednesday, June 22, 2011

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:


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:

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

Saturday, June 18, 2011

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.

Thursday, June 9, 2011

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!

Saturday, June 4, 2011

MS Variety Show

This post is just a variety of interesting topics.  This first topic is a bit morbid, but if a cure doesn't happen in my lifetime, then I would definitely be willing to donate my organs to science in the hopes of a cure being found someday.
Donate to MS Tissue Banks – People living with MS may hold the key to curing this disease. One way they can make a difference is to arrange to donate their brain and spinal cord tissues when they die. The decision to participate in this very special research area is truly appreciated by all who are involved in moving toward a world free of MS.
For tissue banks and more information visit: http://www.nationalmssociety.org/research/researchers-need-you/donate-to-tissue-banks/index.aspx
This next topic is interesting because it may help to explain why more women are diagnosed with MS than men.  Also, this research may help to develop new treatment options!
Estrogen Receptors Play Anti-Inflammatory Role in the Brain
Researchers have uncovered an unexpected role for estrogen receptors (ERs) in the brain in keeping inflammation under control. The findings from a University of California (UC) study may have important implications for the treatment of multiple sclerosis and many other neurodegenerative diseases. They might also help to explain why women are three times more susceptible to developing MS than men are, researchers say. 
"We've really discovered an alternative pathway for estrogen receptors in the brain," said Christopher Glass of UC, San Diego. 
ERs are primarily known to activate programs of gene expression, but in this case estrogen receptors are critical for turning off genes that would otherwise lead to chronic inflammation.
Although MS is a very complicated disease, the findings suggest drugs targeted at certain ERs might effectively shut down the inflammation that goes along with the disease, the researchers suggest. The findings might also help to explain the strong sex bias in MS, which disproportionately affects relatively young women.
"Although the estrogen receptors (ERs) have been implicated in the etiology of MS, no clear molecular mechanisms link them to relapsing-remitting MS," wrote David Gosselin and Serge Rivest in an accompanying commentary, noting that the recent research may fill that gap. In addition to explaining why females develop MS more often than males, Gosselin and Rivest continued, the findings also suggest that birth control medications and environmental factors such as estrogen analogs derived from plants might also promote development of the disease.
These findings were reported in the May 13 issue of the Cell Press journal Cell.
The third topic is more about Tysabri's scary side-effect, PML, and the number of deaths reported.  Apparently three years into taking Tysabri is when the risk of PML is highest.  Yikes!
FDA Updates Tysabri's Timeline Warning for PML
The brain infection risk from Biogen Idec's multiple sclerosis drug Tysabri appears highest during the third year of treatment, according to U.S. health officials who issued an updated warning.
The potentially fatal infection, known as progressive multifocal leukoencephalopathy (PML), occurs in an estimated 1.5 per 1,000 patients treated with Tysabri during months 25 to 36, the Food and Drug Administration (FDA) said. The drug is given through a monthly infusion.
Biogen withdrew the drug in 2005 after the first reports of the brain infection. Tysabri returned to the market with restrictions in 2006.
In its latest statement, the FDA said the PML risk was 0.3 per 1,000 patients during the first two years of treatment. After three years, the rate was 0.9 per 1,000. Limited data is available beyond four years.
The estimates have been added to the prescribing instructions for Tysabri, which Biogen makes with Irish drugmaker Elan Corp Plc.
The FDA said it was the first time it had estimated the chances of PML for specific time intervals rather than providing a cumulative risk over years. The new estimates "will allow prescribers to better assess risk based on duration of treatment," the agency said.
The total number of cases worldwide stands at 111 as of April 1, according to Biogen.
My fourth topic is good news for getting a better look at the damage done to the myelin sheaths of the MS-affected nerve cells.
New Technology Allows Better Look at Myelin Destruction
A new method for making detailed X-ray images of brain cells can map the myelin sheaths of nerve cells, which are important for conditions such as multiple sclerosis and Alzheimer's disease. Researchers, including members from the Niels Bohr Institute at the University of Copenhagen, have developed  the method called SAXS-CT. For the first time, myelin layers can be viewed in 3-D X-ray images.
"We can see the myelin sheaths of the neuronal axons and we can distinguish the layers which have a thickness of 17.6 nanometers." explains Torben Haugaard Jensen. "Up until now, you had to cut out a little sample in order to examine the layers in one area and get a single measuring point. With the new method we can examine 250,000 points at once without cutting into the sample. We can get a complete overview over the concentration and thickness of the myelin and this gives us the ability to determine whether the destruction of the myelin is occurring in spots or across the entire sample," he explains.
The research provides new opportunities for collaboration with doctors at Copenhagen University Hospital and the Panum
Researchers say that by following the development of the disease and discovering how the brain is being attacked, they may be gathering knowledge that could one day be used to develop a treatment.
The results of their work have been published in the scientific journal, NeuroImage
The next topic in the Variety Show is for those who are looking for a new workout - apparently kickboxing is the key to improving balance and mobility of the MS-affected.
Study Shows Benefits of Kickboxing in MS
Dr. Kurt Jackson, a physical therapist and the neurology coordinator of the University of Dayton's doctor of physical therapy program, recently completed a second research study on the safety, feasibility and effectiveness of kickboxing for people with multiple sclerosis. He found kickboxing is safe, may improve the balance and mobility of people with MS and can be adapted for people with varying degrees of the disorder.
"Ideally, a person with MS needs to perform exercises that target balance, aerobics, strength and flexibility," Jackson said. "Kickboxing lets a person do all of these in a single activity."
He published the results of a pilot study last year in the Journal of Bodywork and Movement Therapies, which showed meaningful improvements in participants' balance, walking ability, and posture. While he is still analyzing the data from this second study, he said he has already observed similar results.
Jackson recruited 13 people with varying degrees of MS for his research study. He divided them into three groups and had them exercise three times a week for five weeks with local kickboxing instructors. The research team conducted the study at Kettering Health Network's NeuroRehab and Balance Center on the campus of Southview Hospital.
The program progressed gradually, eventually adding combinations of punches, kicks and footwork, first using imaginary targets and then heavy bags.
"The participants are showing the most improvement in the tests that measure the higher levels of balance, likely because kickboxing requires these higher skills," Jackson said. The exercises specifically target the participants' core trunk control, which is needed for basic tasks such as walking, getting dressed while sitting on the edge of a bed, getting on and off a toilet, and preventing falls.
A community-based exercise program like kickboxing may be just what the doctor ordered. Jackson recommends if people with a chronic neurological condition want to enroll in a community kickboxing program, they should consult a physician or physical therapist to check their balance and determine if they would be safe to participate and if any special equipment or precautions are needed.
The final topic - forget Bike MS, for the extreme cyclists, you can bike across the United States all while fundraising and raising awareness for MS!
Bike across the US for MS
About 60 cyclists will soon dip their bicycles in the Atlantic Ocean to signify the start of a two-month-long ride across the United States to fundraise and increase awareness for multiple sclerosis on behalf of Bike Across the US for MS. Not only have past rides raised about $300,000 for the MS cause, but cyclists have stopped along their journey to help with home modification projects to assist those living with MS. This year’s cyclists would like to connect with anyone in the MS community as they make their way across the US. To view the three different routes, the cities they pass through, and the schedule, go to www.biketheusforms.org
All of this material came from my most recent mailer from the Multiple Sclerosis Foundation, so thanks to MSF for the great information!