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.

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!


  1. you never cease to amaze me!

  2. Great selection of topics.I search through your posts and they are very interesting, always talking about recent news and developmensts that I would have never found searching over the internet. I appreciate you are gathering them and sharing them with us.
    John, from progressive multifocal leukoencephalopathy treatments.

    1. Thank you for your kind words! I try to keep everything updated.