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, April 27, 2011

Nothing Compares

I have been doing some MS-related research today, but after my last post discussing a potential cure (Research Only Ends with a Cure), no news really compares.  I just cannot seem to get excited about more research into the relationship between MS and Epstein -Barr virus and Vitamin D (see this article), or the prevalence of CCSVI in MS patients (see this article).  It just doesn't get my juices flowing quite the same way as the article discussing the research in mice that tends to show scientists may have discovered the chemical driving force behind MS.  Maybe it is just because I am tired today, or maybe it is because I am so excited to learn more about this potential cure, that nothing else seems as interesting.

In other news, I received an update today on Jabeccawalk (see Getting Involved and an MS Competition).  This is what the email I got said:
For the past four years Cranford, NJ brother and sister Jarrod and Becca have been planning their hike along the Appalachian Trail. On March 21 they embarked on Jabeccawalk: End to End for MS Hike, with a mission of raising $10,000 for the Multiple Sclerosis Association of America. This 2,181 mile journey will take them from Georgia to Maine over the next three months.
As they spend time hiking through North Carolina and Tennessee along the trail, their route includes the the long climb of the Stecoah-Cheoah mountain area and many steep ups and downs from a low of 1,725 feet to over 5,498 feet in elevation.
To contribute to their cause, visit this page.  It is so great what they are doing! 

Well, I think I am going to go relax now.  Hope everyone is well!

Sunday, April 24, 2011

Research Only Ends with a Cure

Happy Easter!

Found a very exciting article today!  It is entitled, "Drug that could stop MS discovered after scientists pinpoint chemical 'driving force' behind the illness."  Might we be close to a cure?  How nice that would be - I continue to be optimistic, but I will not get my hopes up too high just yet.  Here are some excepts from the article:

A drug that could stop multiple sclerosis in its tracks has been discovered by scientists.
In a major breakthrough in the battle against the devastating disease, researchers have pinpointed the chemical ‘driving force’ behind MS.
Without it, the disease does not develop.  And when it is mopped up, symptoms are greatly eased, even in brains already ravaged by the illness.
The ‘shockingly good’ results come from experiments on mice but the researchers say they are ‘quietly optimistic’ that taking the same tack with humans will also work – and the first trials on MS patients are penciled in for later this year.
The excitement centers around two studies published today that show an immune system chemical called GM-CSF to be the ‘vital piece in the jigsaw’ of MS.
In the healthy body, it is part of our defense against disease, attacking viruses and other invaders.
But in MS, it triggers a series of devastating reactions that culminate in ‘scavenger cells’ destroying myelin, the fatty protective sheath around nerve fibers in the brain and spinal cord, disrupting the transmission of vital signals.
Swiss researcher Burkhard Becher said: ‘When they see GM-CSF they eat anything they can get their hands on.’
When, Professor Becher, of the University of Zurich, gave an anti-body that counters GM-CSF to mice with an MS-like condition, it greatly improved their health.
He said: ‘It is relatively easy to stop mice from getting the disease, so we waited until they had the disease and were pretty sick.
‘This is similar to the clinical situation – patients don’t go to the doctor because they think they might get MS, they go when they have MS.’
The drug was also given to mice whose disease was similar to the most common form of MS, in which relapses are followed by periods of remission.
Here, mopping up the GM-CSF prevented any further relapses, the journal Nature Immunology reports.
Professor Becher told the Daily Mail: ‘I am not sure this is going to work in patients but, based on the mouse data, I believe GM-CSF is a sexy target – it may actually do the job.’
This will still need to undergo extensive testing and it "usually takes at least seven years from when a drug is first tried out on patients until it hits the market."  So, it may be awhile before we know anything for sure, but it sure is a reason to stay OPTIMISTIC!

To read more about the research, go to:

"Research Teams Implicate GM-CSF in the Pathogenesis of Multiple Sclerosis"

"Neutralization Cytokine GM-CSF Cures MS in Mice"

In church this morning, the pastor spoke of the tradition of wearing new clothes on Easter and that the reason for this is that Easter signifies a re-birth or a new birth.  With this news breaking today, on Easter, it gives me even greater hope because maybe this is God's way of telling us that a "new birth" is coming for MS patients. 

Happy Easter!

Wednesday, April 20, 2011

Research Research Research!

I have been pretty tired lately, but I am determined to continue to post at least once per week!

I just got around to reading emails that have been accumulating for the past few days and I learned that recently the National MS Society (NMSS) committed $17.5 million to support 50 new MS research projects.  This is all "part of its comprehensive strategy to stop MS in its tracks, restore function that has been lost, and end the disease forever."  The following is from the NMSS website:
To find the best research projects, the National MS Society relies on more than 70 world-class scientists. These scientists volunteer their time to carefully evaluate hundreds of proposals every year.
The new projects support the comprehensive research goals outlined in the Society’s five-year Strategic Response, including an increased focus on understanding and stopping disease progression, supporting development of new therapies, identifying rehabilitation and other strategies to restore function, and getting more researchers and scientists focusing on MS. The new projects include:
  • clinical trials testing whether vitamin D can stop MS activity
  • a clinical trial to evaluate whether a repurposed drug, phenytoin, can protect the nervous system from MS damage;
  • investigations of mechanisms that may lead the immune system to turn against the nervous system;
  • studies of natural molecules that may stimulate repair of the nervous system to restore function; 
  • studies exploring novel exercise programs to combat MS symptoms; and
  • a study comparing the activity of several viruses, including Epstein-Barr virus, that may be involved in triggering immune attacks in people with MS, which may lead to clues to ending MS through prevention. 
This is so great!  I am so happy to know that so much research is ongoing!  I am also glad to know that all of that money we all raise every year for Walk MS, Bike MS and a number of other NMSS events is going toward all of this exciting research!  I am especially excited to learn more about this Vitamin D theory.  Personally, I have been taking Vitamin D supplements since the Valentine's Day teleconference and I would love to know if those are helping in any way.

I also learned that the oral drug BG-12, which I previously posted about here, which is in clinical trials recently reported some positive results.  The following are excerpts from the NMSS website:
Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced the proportion of people with MS who experienced relapses in a two-year study of more than 1200 people with relapsing-remitting MS. Although its exact mode of action is not known, BG-12 is thought to inhibit immune cells and molecules involved in MS attacks on the brain and spinal cord. The results were announced in an April 11 press release. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Another trial of BG-12 is currently underway.
In an earlier phase 2 study, compared to inactive placebo, the highest tested BG-12 dose led to a 69% reduction in active inflammation on MRI scans from weeks 12 to 24. Side effects (formally known as adverse events) included abdominal pain, flushing, headache, fatigue, and feeling hot.
The primary goal of the DEFINE study was to determine whether BG-12 could decrease the proportion of participants experiencing relapses and whether the agent was safe and well tolerated. Secondary objectives included assessing BG-12’s effects on the frequency of relapses, disability progression, and disease activity detected by MRI.
Participants were randomly assigned to one of two treatment groups receiving different doses, or a group receiving placebo. According to the press release, in both groups taking BG-12, the primary endpoint was met, meaning a significant reduction in the proportion of people experiencing relapses at 2 years. All secondary endpoints were met as well in these groups, with significant reductions in relapse rate, disease activity on MRI scans, and in disability progression as detected by the EDSS, a standard scale that measures disability. According to the press release, adverse events were similar to those experienced during the Phase 2 study (those included abdominal pain, flushing, headache, fatigue, and feeling hot):
These positive results are the first reported from this large, Phase 3 study of BG-12. Full details and evaluation of this study, and from another Phase 3 study now underway, should help define the safety and promise of BG-12 as a potential therapy for relapsing MS.
More good news!  Maybe soon a second oral therapy will be available!  That is enough news for one night, but everyone should also check out the Emerging Therapies Collaborative at this website.  Also, if you have a chance, you should check out this MS blog.

Hope everyone reading is well!  Look forward to another post by the end of the weekend!

Sunday, April 17, 2011

Busy Week Ahead

Saturday's Walk MS that I participated in went off without a hitch!  My team volunteered to help set up so we got to the Walk location at 7am, we had a lot of help so we were able to have everything set up by 8:30am and around 9am registration began.  The walk started at 10am.  My team walked the long route which was about 3 miles.  It was a little cool, but as the morning progressed, it continued to get warmer.  The wind wasn't blowing too terribly which was great (especially since Friday's winds got up into the 50mph range in some parts of the state).  I did notice that my core temperature rose enough about half way into the walk that I started to notice some tingling.  However, by shedding a few layers, I was able to control much of the tingling.  It is nice to know that I have SOME control over this disease. 

I anticipate having a very busy week ahead of me.  Tomorrow is my 2 year wedding anniversary and we don't even know when we will celebrate.  We plan on doing something at some point this week though (even if it is just going out to dinner one night).  Work is very busy right now and I have been bringing work home with me most evenings lately.  Hopefully the week isn't quite as busy as I anticipate so that I can post some good blogs this week. 

Hope everyone reading is doing well! 

Thursday, April 14, 2011

Two More Days

Only two more days until I participate in Walk MS!  Although I have participated in the walk before, this will be the first year that I participate as someone diagnosed with MS.  Kind of strange, but glad to be involved! 

This is a short post because this week has been extremely busy and I am still doing work this evening, but I wanted to post a little something.  Hopefully, I will have a chance to post again soon!

Monday, April 11, 2011

Getting Involved and an MS Competition

The Walk MS that I am participating in is this Saturday (April 16th)!  I have raised over $2500, but would love to raise $3000.  If you are interested in donating, go to my personal page.

Played volleyball again yesterday and it, again, went very well.  I was concerned though because the gym was very warm and I thought I might overheat and have a flare up, but I didn't!  

Learned about Jabeccawalk today.  These are two siblings who decided that they were going to hike the Appalachian trail.  On March 21st, they embarked on an "End to End for MS Hike."  Their mission is to raise $10,000 for the MSAA.  This endeavor will span 2,181 miles and will take three month to complete.  To learn more about Jabeccawalk and/or to donate, visit their MSAA page or visit their blog

I also recently learned about a competition that Merck Serono has called "Real MS."  This is from an MS Foundation mailer:

Global Competition Celebrates Innovation and Inspiration of MS Community
Merck Serono, a division of Merck KGaA, Darmstadt, Germany, has launched Real MS: Your Innovation, a global design competition searching for unique and innovative ideas that could help people overcome the daily challenges of life with MS. Your Innovation is the second phase of the Real MS campaign, a global initiative giving a voice to those whose lives have been touched by MS, and celebrating their journeys, achievements, and ideas for the future management of the disease.

Real MS launched in May 2010 with Real MS: Your Story, a global script writing competition that collected more than 100 powerful and inspiring stories of those living with or impacted by MS from around the world. The winning concept was developed into an international short film, “MS: It’s a Marathon, Not a Sprint”, that shows how life with MS can be redefined in a positive and fulfilling way. To view the winning short film, please visit www.realmsvoices.com.
Your Innovation will search for new and creative ideas for adaptive physical products or online applications that could help people live better with MS. The winning innovation, selected by an international judging panel and voted on by the MS community, will be shared with the MS community later in 2011.
For more information on the Real MS campaign and Your Innovation, including terms and conditions of the competition, please visit the campaign website at www.realmsvoices.com. This site is not intended for use by residents of United Kingdom and Ireland.

If you have a winning idea, join the competition!  Or donate money to go toward MS research!

Sunday, April 10, 2011

More on CCSVI

After posting about angioplasty and CCSVI last time, I found more information regarding CCSVI research that is ongoing this year.

This article is from the NMSS website:
Studies in 2011 Could Decide MS Theory's Validity
Preliminary studies have suggested that a phenomenon called Chronic Cerebrospinal Venous Insufficiency (CCSVI), a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paolo Zamboni from the University of Ferrara in Italy who published initial findings in June 2009 from a study of approximately 65 patients. There have been additional studies published since then, some of which show[] results that conflict with the original findings.  []
National MS Society research leaders first met with Dr. Zamboni in February 2010 at New York University’s Society-funded MS Center of Excellence and again in April when the Society hosted, along with the American Academy of Neurology, a live Web forum on CCSVI. Based on the results of preliminary research which has been published in respected peer journals, Dr. Zamboni and others have recommended larger scale studies to determine if CCSVI may be treated through an endovascular surgical procedure, which involves inserting a tiny balloon or stent into blocked veins in order to improve the flow of blood out of the brain and spinal cord.
Dr. Zamboni suggests that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgical procedure.
This Lead is Being Pursued
The Society shares in the public urgency to advance the understanding of CCSVI as quickly as possible. In order to pursue new and unanticipated leads in MS, the National MS Society established the Rapid Response Fund. An example of this fund in action is the global outreach and expedited review process that led to the more than $2.4 million which the US Society, in collaboration with the MS Society of Canada, is devoting to the funding of seven initial grants that focus on the role of CCSVI in the MS disease process. Work has already begun on these grants.  []
The seven new grants were chosen by an international panel of experts for having the greatest potential to quickly and comprehensively determine the significance of CCSVI and its relationship to MS. The chosen projects include an integration of experts drawn from all key relevant disciplines including radiology, vascular surgery and neurology. Bringing together experts across these areas will help to facilitate and speed the understanding of CCSVI in MS.
The new studies will carry out significant steps needed to confirm the phenomenon originally described by Dr. Paolo Zamboni and resolve the questions raised by him and others as to whether CCSVI is a cause of MS or related to MS in some other manner. These studies will also resolve conflicting data from previous research, such as how frequently CCSVI occurs in MS, and how often it occurs in people who do not have MS. If blockages are found, the findings will speed the way to determining whether therapeutic trials to correct them will be helpful in improving or altering MS disease process.
Adding clarity to the relationship between CCSVI and MS is essential in assisting people with MS secure any treatment they may consider. Medical institutions and health care providers require research data confirming the validity, necessity and safety of any procedure they provide, and in their view that data is not yet available as it relates to the relationship between CCSVI and MS.
Global Effort
This funding announcement is only a part of the global effort underway to pursue the CCSVI lead. The MS Society of Italy announced in June 2010 its intentions of supporting a 900,000 euro epidemiology study of CCSVI involving 1500 people with MS, bringing the international commitment of the MS Societies pursuing the CCSVI lead to nearly $3.4 million.
It has been reported that Dr. Zamboni is in the process of developing a randomized clinical trial comparing disease modifying therapy with and without balloon venoplasty with sponsorship from the Italian Government. Also, researchers from the University at Buffalo are undertaking a placebo-controlled trial involving 30 people with relapsing remitting MS, which may ultimately involve more depending on preliminary findings. A trial currently listed in the US clearinghouse registry "clinicaltrials.gov" is in Albany, NY, though it has not yet begun recruiting participants for the study. Currently, among the Canadian provinces there is debate underway along with proffered commitment among some to fund a therapeutic trial in order to evaluate CCSVI related treatment in MS, but no action has yet been undertaken.
The U.S. and Canadian MS Societies are working with the Multiple Sclerosis International Federation and other MS Societies from around the world to ensure coordination of information and to share research data from ongoing work that is underway around the world – further speeding progress.
I am very glad that they are researching CCSVI.  It seemed like many doctors had dismissed this procedure because there was so much controversy over whether it was a plausible treatment for MS.  I am happy to know that research is ongoing to determine whether CCSVI is truly a concern for MSers and whether the procedure can be helpful for MSers.  I can't wait to learn more about their findings.

Thursday, April 7, 2011

Angioplasty: Is It Safe?

Before we get to the angioplasty information, a brief update.  Still feeling well overall; I have had a few bouts of numbness in my toes/feet, but nothing to extreme.  Overall, I would say that I am feeling "normal."  L'Hermittes flares up every now and then, but it is rather mild so no big deal.  I played volleyball again on Tuesday and that went well.  I really need to get back into my exercise routine - I have been very lazy lately because I have been very busy and when I am home I don't really want to be doing anything.  I will get back in a routine soon, I hope.  OK, enough about me, onto the news.

Another article from an MS Foundation mailer:

Safety of Using Angioplasty to Widen Veins
Angioplasty is a medical treatment used by interventional radiologists to widen the veins in the neck and chest to improve blood flow. Understanding that it is a safe procedure may encourage additional studies for its use as a treatment option for individuals with multiple sclerosis, said researchers at the recent Society of Interventional Radiology's 36th Annual Scientific Meeting in Chicago, Ill.

"Angioplasty – the nonsurgical procedure of threading a thin tube into a vein or artery to open blocked or narrowed blood vessels – is a safe treatment. Our study will provide researchers the confidence to study it as an MS treatment option for the future," said Kenneth Mandato, M.D., an interventional radiologist at Albany Medical Center in Albany, N.Y.
In a retrospective study, 231 people with MS (age range, 25 to 70 years old; 147 women, 84 men) underwent this endovascular treatment of the internal jugular and azygos veins with or without placement of a stent (a tiny mesh tube).
"Our results show that such treatment is safe when performed in the hospital or on an outpatient basis – with 97 percent treated without incident," Mandato noted. He added, "Our study, while not specifically evaluating the outcomes of this endovascular treatment, has shown that it can be safely performed, with only a minimal risk of significant complication. It is our hope that future prospective studies are performed to further assess the safety of this procedure."
Complications included abnormal heart rhythm in three patients and the immediate re-narrowing of treated veins in four patients. All but two of the patients were discharged within three hours of receiving this minimally invasive treatment.
In 2009, Paolo Zamboni, a doctor from Italy, published a study that suggested that a blockage in the veins that drain blood from the brain and spinal cord and return it to the heart (a condition called chronic cerebrospinal venous insufficiency or CCSVI) might contribute to MS and its symptoms. The idea is that if these veins were widened, blood flow may be improved, which may help lessen the severity of MS-related symptoms.
The Society of Interventional Radiology (SIR) issued a position statement last fall supporting high-quality clinical research to determine the safety and effectiveness of interventional MS treatments, recognizing that the role of CCSVI in MS and its endovascular treatment by an interventional radiologist via angioplasty and/or stents to open up veins could be transformative for people with MS.
SIR's position statement agrees with MS advocates, doctors and other caregivers that the use of any treatment (anti-inflammatory, immunomodulatory, interventional or other) in people with MS should be based on an individualized assessment of disease status, his or her tolerance of previous therapies, the particular treatment's scientific plausibility, and the strength and methodological quality of its supporting clinical evidence.
More information about the Society of Interventional Radiology, interventional radiologists, and minimally invasive treatments can be found online at www.SIRweb.org.
So, essentially, this is more ongoing research that is related to CCSVI.  I wonder if they are considering angioplasty in areas other than the neck region, it is a little unclear.  Glad to hear that they are researching this topic more - it seems as though it could be a real breakthrough for, at least, some MSers.  I am a little curious and want to discuss getting the MRV to check to see whether I have any blockage in my veins, but I am a little unsure if it will be worth it to do so. 

Time to go spend some quality time with my husband and dog.  Thanks for reading! 

Monday, April 4, 2011

Axon Damage Might Precede Myelin Damage?

An article from an MS Foundation mailer that I received:

Axon Damage May Precede Myelin Damage
It has recently been discovered that axons, or nerve cells, can start degenerating spontaneously without prior damage to their protective myelin coating. If found and treated early, this process can be reversed in mice, which may lead to new effective treatments for MS, according to the findings of a study published in Nature Medicine.

In the paper, senior authors professor Martin Kerschensteiner of the Ludwig-Maximilians-Universit├Ąt in Munich, Germany, and professor Thomas Misgeld from the Technical University of Munich, and colleagues describe how they found a previously unknown type of axon or nerve cell degeneration, which they call "focal axonal degeneration" (FAD).

While the discovery opens the door to new drug targets, the researchers warn there is still a lot of work to be done before effective treatments are available, as Kerschensteiner explained:

"As yet, we only have a superficial understanding of the underlying molecular mechanisms and, of course, finding effective therapies will require time-consuming screens and extensive trials of drug candidates," he cautioned.

Autoimmune diseases like MS occur when the immune system, which normally only targets and destroys foreign agents such as toxins, bacteria and viruses, that have entered the body, instead attacks the body's own tissue, causing inflammation and eventually degeneration of the area affected.

The predominant view is that axon damage in MS follows the gradual destruction of the myelin sheath, the protective, electrically insulating coating of tissue surrounding the axon that speeds up the transmission of signals.

What triggers the axon damage itself, however, is poorly understood, and it was this that Kerschensteiner and Misgeld were trying to learn more about using lab mice when they made their surprising finding.

The finding may explain why some patients with MS experience spontaneous remission of symptoms:

"In its early stages, axonal damage is spontaneously reversible," said Kerschensteiner. "This finding gives us a better understanding of the disease, but it may also point to a new route to therapy, as processes that are in principle reversible should be more susceptible to treatment."

“However, before any potential drugs can even be considered, never mind put forward for trial, we need a much better understanding of the underlying molecular chemistry and biology of a disease.”

Previous studies of MS have already suggested that reactive oxygen and nitrogen radicals, chemicals produced by the immune system, play an important part in destroying axons. The researchers suggest in the case of FAD, these aggressive chemicals attack the mitochondria inside the nerve cells. Mitochondria are the "power cells" inside cells, they synthesize ATP molecules, the universal "currency units of energy" with which cells build, maintain and operate themselves.

In the lab mice, they were able to take action to rescue axons that had already started degenerating.

And in a final stage of their study, they found characteristic signs consistent with FAD in brain tissue from humans with MS, giving hope that the same treatment principles they established in the mice might also work in humans.

I find this to be VERY interesting, considering the fact that I have only ever been told that MS is the result of the immune system attacking the myelin, thus damaging the body's ability to properly transmit the neurons.  It is very intriguing to now learn that the axons may be damaged without damage to the myelin sheath!  I cannot wait to learn more about this research!