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.

Sunday, September 25, 2011


This weekend was my 10 year high school reunion.  Got to see a lot of great people and learn what everyone is up to these days.  It was great to see everyone, but I am a little sad that I didn't get to catch up with everyone; there just was not enough time.  It was a lot of fun though and hopefully we can all get together again soon!  And maybe I will do a better job keeping in touch with people.

And now for the MS info :-)  The following comes from my MSF e-mailer:

Number of Genes Linked to MS More than Doubles
The largest-ever gene study of MS has identified 29 new genetic variants associated with the disease, confirmed 23 previously known genetic links, and suggested five more genes that may contribute to the disease.
Scientists regard the findings, recently published in the journal Nature, as significant for two reasons:  Because many of the genes linked to MS are involved in regulating the immune system –  specifically, the development of T cells – this boosts speculation that the disease is primarily an autoimmune disorder. It also gives researchers new targets for future treatment strategies.
For the study, scientists compared DNA from nearly 10,000 people with MS with DNA from more than 17,000 unrelated, healthy individuals. The researchers were affiliated with the International Multiple Sclerosis Genetics Consortium and the Welcome Trust Case Control Consortium.
They said the newly-found links point to the idea that T-cells – a type of white blood cell responsible for mounting an immune response –   and chemicals called interleukins play a key role in the development of the disease.
Drugs that target the immune system include rituximab, sold under the brand name Rituxan® by Roche and Biogen to fight leukemia, Tysabri® from Biogen and Elan, Lemtrada, sold as Campath® by Sanofi's unit Genzyme for cancer, and Abbott and Biogen's Zenapax® or daclizumab. Mid-stage trial data for daclizumab recently showed the drug on a par with other new medicines for MS, but some of the side-effects were worrisome.
Experts think both genetic and environmental factors are equally important in determining who is likely to develop MS, and taken together, the known genetic variants probably explain about 20 percent of the genetic links, they said.
In a second study reported in the Public Library of Science journal PLoS Genetics, researchers found that many of the genes linked to MS are also linked to other autoimmune diseases such as Crohn's disease and Type 1 diabetes. This also points to potential new uses for existing drugs in development, they said.
Previous research has suggested a link between Vitamin D deficiency and an increased risk of MS. Compston's team said that along with the many genes which play a role in the immune system, they had also found two involved in the metabolism of Vitamin D – which mostly comes from sunlight – lending weight to a possible link between genes and the environment.

"We have known for some time that many devastating diseases of the immune system must have common genetic causes," said Chris Cotsapas of Yale University in the United States, who led the PLoS study. "Now we have the outline of a map that tells us where we can look for common treatments."
In 2007, only three genes were linked to MS.

Research Identifies How Vitamin D Combats MS
New research has indicated that vitamin D directly terminates the production of a disease-causing protein, a discovery that may explain the association between levels of vitamin D in a person’s body and the person’s ability to resist or minimize the effects of MS.
According to the investigators, a collaborative team of scientists from the University of Medicine and Dentistry of New Jersey and Stanford University, the mechanism they identify suggests what might be a new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases. The mechanism identified by the research team works like this:
During MS (“EAE” in mice), a damaging protein called interleukin-17 (IL-17) is produced by immune cells in the brain.
After vitamin D binds to its receptor, the receptor parks itself on the gene that encodes IL-17.
By doing so, the vitamin D receptor occupies a site normally reserved for a protein called NFAT, which is required to turn the IL-17 gene on.
The gene stays off and IL-17 levels plummet.
At the same time, the vitamin D receptor turns on another gene, whose product generates suppressive T cells that combat the destructive action of their IL-17-producing counterparts.
The study is published in the September issue of the journal Molecular and Cellular Biology.

Unique Trial uses Adult Stem Cells to Treat MS
The Cleveland Clinic, the University Hospitals Seidman Cancer Center, and Case Western Reserve University are collaborating on a one-of-a-kind clinical trial in the United States which uses a person’s own adult stem cells to treat MS and perhaps even reverse damage caused by the disease.
Mesenchymal stem cells, or MSCs, are found in the bone marrow and are not the embryonic stem cells that have stirred controversy in political and religious arenas.
In the phase one trial, a person’s MSCs are harvested, carefully cultivated in a special laboratory and then injected intravenously back into the individual. Since June, three people have undergone the entire process. A total of 24 participants with relapsing or progressively worse MS who have moderate to severe disability will take part in the study over the next two to three years.
The primary aim is to test the feasibility and safety of using the body's own stem cells to treat MS. But researchers also are looking closely for any preliminary evidence that the transplanted cells could moderate the over-active immune system, possibly stopping or even repairing tissue damage.
If promising results lead to a larger, multicenter clinical trial that also yields good outcomes then the treatment could be offered in a clinical setting within five to seven years, researchers involved in the study told the Cleveland Plains Dealer.
More than 150 other clinical trials in the United States and around the world are currently testing MSCs' ability to encourage tissue repair as a way to treat a variety of other conditions such as osteoarthritis, diabetes, emphysema, and stroke. Stem cell therapy is already used to treat leukemia, lymphoma, and certain blood disorders.

 The next post will have more from the MSF e-mailer - there is some really interesting stuff in this most recent e-mailer!  I love learning more about vitamin D and stem cell research!  It is so great that this research continues; I am so hopeful that a cure will come in my lifetime!

Tuesday, September 20, 2011

A Little Bit of This, A Little Bit of That

Random excerpts from my MSIF e-mailers:

A good reason to find a doctor that you like: An "study from Italy found that a good physician-patient relationship improves both patient satisfaction and adherence to long-term therapy."

A randomized trial of new drug, Simvastatin, "involved giving 80 mg Simvastatin daily for six months to people with optic neuritis. The results suggest that this is well tolerated and possibly effective in patients with acute optic neuritis."

"Alemtuzumab, a candidate treatment for MS, has the potential side effect of autoimmune disease. In this study, the authors analyse both clinical and serological data of patients with MS treated with alemtuzumab. It was found that autoimmune disease developed in 22.2% of those treated with a range of different systems affected."

And now, from the NMSS website, What Causes 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.
Background: This study takes advantage of the collaborative efforts of the Pediatric Network. Although the initial grants end this year, there is funding through 2012 to support a data coordination and analysis center so the Network can continue to collect data and study pediatric MS and related disorders. The Network produced over 150 papers, posters and presentations on pediatric MS and network members are the lead authors and editors of a textbook on Pediatric MS from Cambridge Press.
The five-year, $3.2 million grant to lead investigator Dr. Emmanuelle Waubant (University of California, San Francisco Pediatric MS Center) from the NIH is based on pilot data collected by the Network in a study of 180 children with MS. That study confirmed previous reports that the Epstein-Barr virus (which causes infectious mononucleosis and other disorders) was associated with higher risk of MS. They also reported that cytomegalovirus was associated with a lower risk of developing MS, and that herpes simplex virus type 1was associated with increased risk in children who did not have a specific immune-related gene. (Neurology 2011;76:1989–1995)
These findings and other factors are being investigated further in the new study, which should help us understand more about how MS begins in children and can eventually be applied to adult forms of MS. Read more about what triggers MS.
The Study: 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.
Investigators specifically are looking at genes, Epstein Barr and other common viruses, vitamin D levels, and exposure to cigarette smoking. They are attempting to confirm these risk factors separately and to determine whether there are any interactions between them.
It would be great to have more answers!

Sunday, September 11, 2011

Remembering . . .

I try not to stray from writing about MS on my blog, but today warrants recognition.  Ten years ago, a terrorist attack stunned America.  Today, we remember those who lost their lives that September day and we thank those who courageously worked and fought to save lives.
I may not be able to remember what I was doing last Tuesday, but I will never forget what I was doing on Tuesday, September 11th, 2001. 
Please take a moment to remember!

Thursday, September 8, 2011

MS Birthday

Today, 9/8/11, is my MS Birthday - exactly one year ago, the doctor diagnosed me with MS and changed my life.  It is crazy to think that a year has come and gone; at the same time it is crazy to think that it has only been a year.  It was April 2010 when I first began noticing MS symptoms and the search for a diagnosis started.  It was April or May 2010 when MS was first mentioned to me as a possibility.  So in a way, it feels like it has been longer than a year.  However, even though everything began in April 2010, I was not diagnosed until 9/8/10 and it wasn't until October 2010 when I first started taking medication for MS.  It certainly does not feel as though it has been a year since I heard those fateful words from the neurologist, but alas, it has been one whole year. 

In the last year I have gone from numbness in my feet and legs to numbness in my left hand, to no numbness; from L'Hermittes constantly bothering me to only bothering me when my core temperature goes up to not bothering me at all; from tingling when my core temperature rises to no tingling at all and back to tingling when my core temperature rises; from pain in my right eye (probably optic neuritis) to no pain to intermittent pain recently (usually at night); from fatigue to severe fatigue and back again (fatigue never really seems to go away, but I am never sure if it is solely caused by MS or a combination of MS, stress, lack of sleep, etc.).  I am sure I could list other "ailments," but those are the main ones.  Overall, I am feeling pretty good lately; generally, the only reminder of my MS I have is my daily shot (which I must say really does get old - I just want a break from it sometimes, but I forge on).

While I certainly am not celebrating a year with MS, I do celebrate the fact that I am doing well overall.  I am celebrating the continuing research that is being done and the hopes of someday having a cure!     

Monday, September 5, 2011

New MSF Mailer - Part II

Happy Labor Day!  I hope everyone has enjoyed the long weekend!  Now, for more from the MSF mailer:
New Research on Breastfeeding with MS Contradicts Previous Findings
Despite previous research suggesting otherwise, breastfeeding does not appear to protect against MS relapses, according to researchers from the University of Florence in Italy. Their study found that the likelihood of relapse after pregnancy was tied to relapses before and during pregnancy but not to whether the mothers in their study breastfed or not. They concluded breastfeeding may not be a feasible option for mothers at high risk of relapse after pregnancy, because they may need to resume drug treatments straight away.
Study author Dr. Emilio Portaccio and colleagues conducted a prospective study of 298 women recruited from 21 Italian MS centers and followed up their pregnancies from 2002 to 2008. During this time, 302 out of 423 pregnancies resulted in full-term delivery, and follow ups continued for at least one year after delivery. About 34 percent of the mothers breastfed for at least two months after delivery, while the remaining mothers breastfed for less than this or not at all and were considered as not breastfeeding. During the 12 months following delivery, 37 percent of the mothers had one relapse and 6.6 percent had two or more.
Using a statistical tool to look at several measures at once to see which have the strongest influence on relapse rate after pregnancy, they found that "the only significant predictors of postpartum relapses were relapses in the year before pregnancy ... and during pregnancy."
The data indicated women who had relapses in the 12 months leading up to their pregnancy were 50 percent more likely to have a relapse after delivery than women who did not have a relapse in the year before pregnancy. And women who had relapses during pregnancy were more than twice as likely to have a relapse after delivery as the women who did not experience relapses during pregnancy.
This was after taking into account influencing factors like age at onset of MS, age at pregnancy, duration of the disease, level of disability, and exposure to drugs, including any MS drugs. There was nothing to suggest breastfeeding worsened the relapse rate.
The researchers also suggested the link between breastfeeding and lower risk of relapses after pregnancy that previous studies have reported may "simply reflect different patient behavior, biased by the disease activity."
"Women who have fewer relapses before and during pregnancy may be more likely to breastfeed and then continue to have fewer relapses in the postpartum period," Portaccio says. However, he said that a course of steroids taken after pregnancy might protect against later attacks, and adds, "Approaches of this type were not assessed in this study and might, in consultation with the treating neurologist, enable breastfeeding."  The study was published in the journal Neurology.
Author Brings Cool Thoughts on Cognition when Heat Meets MS
The fact that heat can cause MS physical symptoms to flare has been well-established, but recent research has shed more light on the problems, confirming what people with MS already know:  Heat can further complicate the cognitive difficulties caused by the disease. Jeffrey Gingold, an award-winning author with MS and volunteer advocate on MS and cognitive disability, recently described his reactions to the research and to the “cognitive sludge” created by rising temperatures. You can read his article, “Cool Thoughts” in the Men and MS column in the summer issue of the MSFocus.
The second edition of Gingold’s popular book Facing the Cognitive Challenges of Multiple Sclerosis (Demos Health, 2011) was recently released. In it, he candidly describes his personal journey from MS diagnosis to learning how to cope with the many challenges the disease brings.  In Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis (Demos Health, 2008) Gingold provides more real-life techniques that have been used with success by people with MS and their medical providers to pushing back against the disruptive and potentially disabling cognitive symptoms.
For a limited time, a 30 percent discount is being offered for those who buy the books at www.demoshealth.com.  Just enter the discount code SSGINGOLD30 during checkout and the percentage will automatically be deducted before checking out. There is an expiration date of 5/31/2013 for the discount.  
One hundred percent of the author’s royalties from the two books are donated to MS research and education.
A Study of Ocrelizumab in People with Primary Progressive MS
This randomized, parallel group, double-blind, placebo controlled study will evaluate the efficacy and safety of ocrelizumab in people with primary-progressive MS. Eligible patients will be randomized 2 to 1 to receive either ocrelizumab (300 mg intravenously, 2 infusions separated by 14 days in each treatment cycle) or placebo. The blinded treatment period will be at least 120 weeks, followed by open label treatment for people in both groups who, in the opinion of the investigator, could benefit from further or newly initiated ocrelizumab treatment. Anticipated time on study treatment is up to five and a half years.
For information on study locations and inclusion criteria go to www.clinicaltrials.gov and search for identifier number NCT01194570.
 I am amazed at the immense impact MS has on the body and mind.  MS truly affects every aspect of life, maybe not all day every day, but it sticks its nasty head in whenever it feels like it and in whatever way it wants.  It can affect balance, coordination, ability to walk, feeling, sleep, thought processes, memory, etc, etc, etc.  The list goes on and on and on.  Don't you just wish that there was something that it couldn't touch?  Hopefully all this great research will lead to a cure!  Continuing to be optimistic although some days that isn't easy.

Thursday, September 1, 2011

New MSF Mailer - Part I

More news to be excited about!  This post (and the next post) contains information set forth in my latest MSF mailer.

First, interesting stuff about Myelin:

Myelin Influences How Brain Cells Send Signals
Myelin is well-known for its protective role in the central nervous system, but recent research suggests that myelin also plays a role in regulating a key protein involved in sending long-distance signals. The development of a new cell-culture system that mimics how specific nerve cell fibers in the brain become coated with protective myelin led to the discovery.
Ohio State University researchers have created a system in which two types of cells interact in a dish as they do in nature: neurons from the hippocampus and other brain cells, called oligodendrocytes, whose role is to wrap myelin around the axons.
MS has long been considered a disease of white matter, a reference to the white-colored bundles of myelin-coated axons that project from the main body of a brain cell. But researchers have discovered that the condition also affects myelinated axons scattered in gray matter that contains main bodies of brain cells, and specifically the hippocampus region, which is important for learning and memory.
Up to half of the people who have MS experience cognitive deficits in addition to physical symptoms. Researchers suspect that cognitive problems are caused by abnormal electrical activities of the demyelinated axons extending from hippocampal cells, but until now have not been able to test myelin's role in this part of the brain.
Now that the researchers can study how myelination is switched on and off for hippocampal neurons, they also can see how myelin does more than provide insulation – it also has a role in controlling nerve impulses traveling between distant parts of the nervous system. Identifying this mechanism when myelin is present will help improve understanding of what happens when axons in this critical area of the brain lose myelin as a result of MS, researchers say.
 Second, bone health is important and more about vitamin D:
Bone Health a Factor in Early MS
Osteoporosis and low bone density are common in people in the early stages of MS, according to a new study.
“We’ve known that people who have had MS for a long time are at a greater risk of low bone density and broken bones, but we didn’t know whether this was happening soon after the onset of MS and if it was caused by factors such as their lack of exercise due to lack of mobility, or their medications or reduced vitamin D from lack of sun exposure,” said study author Stine Marit Moen, M.D., of Oslo University Hospital Ulleval in Norway.
Low vitamin D levels are associated with an increased risk of MS. Low vitamin D levels can lead to reduced calcium absorption and bone mineralization, or the process the body uses to turn minerals into bone structure.
“Our hypothesis was that if vitamin D exerts a major effect on the risk of MS, then the effects of low vitamin D levels on bone density would be apparent soon after the onset of MS,” Moen said.
The study involved 99 people with an average age of 37 who were recently diagnosed with MS or clinically isolated syndrome, which means they had a first episode of symptoms like those in MS but have not yet been diagnosed with the disease. All had no or minor physical disability from the disease.
The participants had bone density tests an average of 1.6 years after the first time they had any symptoms suggestive of MS. Their tests were compared to bone tests of 159 people of similar age, gender, and ethnicity who did not have the disease.
A total of 51 percent of those with MS had either osteoporosis or osteopenia, compared to 37 percent of those who did not have the disease. Osteoporosis is a disease where low bone density causes the bones to become thin and brittle, making them more likely to break. Osteopenia is low bone density that is less severe than osteoporosis but puts a person at risk for osteoporosis.
The results remained the same after researchers adjusted for other factors that can affect bone density, such as smoking, alcohol use, and hormone treatment.
“These results suggest that people in the early stages of MS and their doctors need to consider steps to prevent osteoporosis and maintain good bone health,” Moen said. “This could include changing their diet to ensure adequate vitamin D and calcium levels, starting or increasing weight-bearing activities and taking medications.”
The study was published in Neurology, the medical journal of the American Academy of Neurology.
Third, more on understanding MS:
MS-Like Disease in Monkeys may Yield Helpful Clues 
The discovery of a naturally occurring disease in monkeys that is very much like MS in humans could have a major impact on efforts to understand the cause of the disease. The disease that researchers from Oregon Health & Science University (OHSU) discovered in monkeys at the Oregon National Primate Research Center is associated with a herpes virus that could give significant clues into how MS develops in humans. MS researchers have long believed that a type of herpes virus may trigger multiple sclerosis in people who are genetically susceptible to the disease.  
"These findings could have a huge impact on our understanding of MS and could be a landmark in someday developing more effective treatments for the disease, or even methods to prevent the onset of MS," said Scott Wong, Ph.D., senior author of the study and a scientist at the Vaccine and Gene Therapy Institute and the Oregon National Primate Research Center.
Before the OHSU findings, researchers had been able to study MS-like diseases in nonhuman primates only after the disease had been artificially induced. A naturally occurring disease, such as the one discovered at OHSU, can give researchers many more clues into the causes and development of the disease.
"Now, we may be able to tease apart what's triggering the onset of the disease," Wong said.
And the fact that the disease, found in a small percentage of the Japanese macaques at OHSU each year, came from a herpes virus could prove hugely important to MS researchers worldwide. Researchers can now search for a similar virus in people with MS.
From 1986 through 2010, 56 of the Japanese macaque monkeys at the Oregon National Primate Research Center at OHSU spontaneously developed paralysis in their hind limbs, along with other symptoms. The monkeys were humanely euthanized because they could not have been returned to the monkey colony safely. Researchers later did necropsies on their bodies and performed MRI scans on eight of the animals.
That work and other testing allowed researchers to discover that an MS-like disease called Japanese macaque encephalomyelitis was causing the paralysis. While the disease typically afflicted young adult animals, it also was present in juveniles and older animals, and was present in both males and females.
About 1 to 3 percent of the more than 300 Japanese macaques at the primate center develop the disease each year, according to the researchers.
With this discovery, MS researchers now will be able to move toward trying to prevent or treat the virus in monkeys, which might help scientists make progress in treating MS in humans. The OHSU researchers' findings were published online in the Annals of Neurology.
Always nice to know that they have found a possible cause of MS - maybe a virus is to blame!