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.

Wednesday, May 30, 2012


Today is World MS Day - a day to advocate and spread the word about MS.  My goal since my diagnosis has been to educate people about MS in any way that I can in hopes that, once people understand what MS is and how devastating it can be, more people will want to get involved in helping find an end to MS.  World MS Day is designed to spur people to do just that.  Today, I received my newest MSF emailer and in it was some VERY exciting news - more progress in MS research.  Below is a few excerpts from the emailer.

Neutralizing Enzyme May Hold Key to Staving Off MS
Researchers studying MS have long been looking for the specific molecules in the body that cause lesions in myelin, the fatty, insulating cells that sheathe the nerves. Nearly a decade ago, a group at Mayo Clinic found a new enzyme, called Kallikrein 6, that is present in abundance in MS lesions and blood samples and is associated with inflammation and demyelination in other neurodegenerative diseases. In a study published in Brain Pathology, the same group found that an antibody that neutralizes Kallikrein 6 is capable of staving off MS in mice. 
"We were able to slow the course of disease through early chronic stages, both in the brain and spinal cord," says lead author Isobel Scarisbrick, Ph.D., of the Mayo Clinic Department of Physical Medicine and Rehabilitation.
Researchers looked at mice representing a viral model of MS. The model is based on the theory that a viral infection early in life results in an eventual abnormal immune response in the brain and spinal cord. One week after being infected with a virus, the mice showed elevated levels of Kallikrein 6 enzyme in the brain and spinal cord. However, when researchers treated mice to produce an antibody capable of blocking and neutralizing the enzyme, they saw a decrease in diseases effecting the brain and spinal cord, including demyelination. The Kallikrein 6 neutralizing antibody had reduced inflammatory white blood cells and slowed the depletion of myelin basic protein, a key component of the myelin sheath.
"These findings suggest Kallikrein 6 plays a role in the inflammatory and demyelinating processes that accompany many types of neurological conditions," says Dr. Scarisbrick. "In the early chronic stages of some neurological diseases, Kallikrein 6 may represent a good molecule to target with drugs capable of neutralizing its effects."
It is so exciting that researchers continue to find new ways to attack MS so that it stops attacking us!  It would be great if they could get a medication formed and start testing this theory out - sounds very promising.
Adult Stem Cells from Bone Marrow Repair Myelin in Mice
A recent study reports that human mesenchymal stem cells (MSCs) have been used in animal models of MS to not only successfully block the autoimmune MS response, but also to repair myelin. Researchers say this demonstrates an innovative potential myelin repair treatment for MS. The human MSCs used in this study were culled from adult stem cells derived from the bone marrow.
The Myelin Repair Foundation (MRF) announced the results of a new peer-reviewed research study published in Nature Neuroscience. Funded by the MRF, this research was conducted by Case Western Reserve University scientists.
Compared to the controls, this research study showed fewer and smaller lesions found on the nerves in the MSC treatment group.
Research by others and results of their own work indicated hepatocyte growth factor, which is secreted by mesenchymal stem cells, was a likely instigator.
The scientists injected animals with 50 or 100 nanograms of the growth factor every other day for five days. The level of signaling molecules that promote inflammation decreased while the level of signaling molecules that counter inflammation increased. Neural cells grew and nerves laid bare by MS were rewrapped with myelin. The 100-nanogram injections appeared to provide slightly better recovery. 
To test the system further, researchers tied up cell-surface receptors, in this case cMet receptors that are known to work with the growth factor. 
When they jammed the receptors with a function-blocking cMet antibody, neither the mesenchymal stem cell medium nor the hepatocyte growth factor injections had any effect on the disease. In another test, injections of an anti-hepatocyte growth factor also blocked recovery. 
The researchers will continue their studies, to determine if they can screen mesenchymal stem cells for those that produce the higher amounts of hepatocyte growth factor needed for effective treatment. That could lead to a more precise cell therapy. 
"Could we now take away the mesenchymal stem cells and treat only with hepatocyte growth factor?" Miller asked. "We've shown we can do that in an animal but it's not clear if we can do that in a patient." 
They also plan to test whether other factors may be used to stimulate the cMet receptors and induce recovery.
 This is more great news in MS research!  I love the continuing research regarding stem cells and how they can be used to help with so many problems, including MS!  This is great to learn that something may actually be able to REPAIR myelin - something I thought was probably beyond the realm of possibility!

Stem cell research and CCSVI all in one blog!  Oh my!
FDA Alerts on Potential Dangers of “Liberation Therapy” for CCSVI
The U.S. Food and Drug Administration (FDA) is alerting people with MS to the risks of serious injuries and death associated with certain procedures to treat chronic cerebrospinal venous insufficiency (CCSVI). The benefits of these experimental procedures, commonly known as “liberation therapy” or the “liberation procedure” have not been proven, says the FDA, and their promotion as a treatment for MS may lead people with the disease to make treatment decisions without being aware of the serious risks involved. 
The FDA’s announcement is also intended to notify physicians and clinical investigators planning or conducting clinical trials using medical devices to treat CCSVI that they must comply with FDA regulations for investigational devices.
The “liberation procedure” uses balloon angioplasty devices or stents to widen narrowed veins in the chest and neck. However, the FDA has learned of cases involving death, stroke, detachment, and migration of the stents, as well as damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the experimental procedure. Balloon angioplasty devices and stents have not been approved by the FDA for use in treating CCSVI.
Some researchers believe that CCSVI, which is characterized by a narrowing (stenosis) of veins in the neck and chest, may cause MS or may contribute to the progression of the disease by impairing blood drainage from the brain and upper spinal cord. However, studies exploring a link between MS and CCSVI are inconclusive, and the criteria used to diagnose CCSVI have not been adequately established, according to the FDA.
The FDA gave the following reasons for issuing the warning:
There is no clear diagnostic evidence that CCSVI exists as a distinct clinical disorder or is linked to MS.
Venous stenoses seen on imaging tests may be normal variants that do not cause any symptoms or disease, since they are sometimes seen in healthy people.
The safety and effectiveness of using balloon angioplasty devices or stents in the internal jugular or azygos veins have not been established for any clinical condition; nor has the FDA approved the use of these devices in these veins.
There is no clear scientific evidence that the treatment of internal jugular or azygos venous stenosis is safe in MS patients, impacts the symptoms of MS, changes the overall course of MS, or improves the quality of life for MS patients.
It is possible that stent placement can worsen any venous narrowing. This is because further narrowing has been shown to sometimes occur within stents placed in veins, due to the body’s response to the implant.
“Because there is no reliable evidence from controlled clinical trials that this procedure is effective in treating MS, FDA encourages rigorously-conducted, properly-targeted research to evaluate the relationship between CCSVI and MS,” said William Maisel, M.D., M.P.H., chief scientist and deputy director for science in the FDA’s Center for Devices and Radiological Health. “Patients are encouraged to discuss the potential risks and benefits of this procedure with a neurologist or other physician who is familiar with MS and CCSVI, including the CCSVI procedures and their outcomes.”
Complications following CCSVI treatment can be reported through MedWatch, the FDA Safety Information and Adverse Event Reporting program. For more information visit www.fda.gov/Safety/MedWatch/HowToReport.    
In February 2012, the FDA sent a warning letter to a sponsor/investigator who was conducting a clinical study of CCSVI treatment without the necessary approval. The sponsor/investigator voluntarily closed the study.
The FDA says it will continue to monitor reports of adverse events associated with “liberation therapy” or the “liberation procedure” and keep the public informed as new safety information becomes available.
Not surprising that the FDA is warning us about CCSVI; I think it was pretty clear that CCSVI treatment has not been proven to help MS patients - it seems to be very helpful for some but not helpful for others.  It is always important to research different "treatments" and "procedures" before diving right in.  It is nice that the FDA is recognizing this and looking into it though.

Finally, the emailer reports that Tovaxin has undergone a name change and will now be referred to as Tcelna (pronounced Te-SELL-nuh).  Tcelna is being researched as a treatment for secondary progressive MS.

Happy World MS Day! 

Sunday, May 13, 2012

Last Year of my 20s

I turned 29 last week and officially entered the last year of my 20s.  I hope that this year is a great end to an era :)  I will have my first child, entering motherhood is sure to be amazing in more ways than one!  I will mark my 2nd anniversary of my diagnoses with MS in September and I will hopefully have an opportunity to get a new MRI and see if I have developed new lesions - I will keep my fingers crossed that I have not!  I am optimistic that this will be a good year!

In news, I just read a blurb that a study was done to see if there is a link between cell phone use and MS - lucky for all of us living in the technology-rich world, "no significant evidence for a pronounced association between mobile phone use and risk of MS or mortality rate among people with MS" was found.

Want to be involved in a clinical trial?  Check out one of these:

What Triggers MS in Kids? –
Investigators nationwide are recruiting 640 children with early relapsing-remitting MS or CIS (clinically isolated syndrome, a single episode of MS-like symptoms) and 1280 children without MS or CIS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. The study, funded by the National Institutes of Health, leverages the National MS Society’s support of the Promise: 2010 Pediatric Network of Centers of Excellence.
Those under age 18 who had disease onset (MS or CIS) in the last two years may enroll in this study with the consent of their parents. Children without MS or CIS can enroll if they are 19 or younger and don’t have a demyelinating disease or an autoimmune disorder (except asthma). 
Participants are providing blood samples to test for genetic and environmental risk factors that may be associated with pediatric MS. Next, all participants are completing questionnaires about relevant environmental factors. Investigators also will draw information from participants’ medical records.
For further information, please contact Janace Hart (University of California, San Francisco) at (415) 514-2476.

Participate in a Trial of Vitamin D Supplementation –
Investigators at several centers nationwide are recruiting 172 people with relapsing-remitting MS to compare the effectiveness of the current recommended amount of vitamin D supplementation versus high dose vitamin D supplementation at reducing MS disease activity, when added to standard therapy with glatiramer acetate (Copaxone®, Teva Pharmaceutical Industries).
To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please see: http://click.icptrack.com/icp/relay.php?r=28288047&msgid=425901&act=X8WI&c=263560&destination=http://www.clinicaltrials.gov/ct2/show/NCT01490502, or e-mail vitamindtrialms@jhmi.edu