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Friday, October 10, 2014

eJournal Your Symptoms

Posted on: January 30, 2014

Dear Write or Wrong, have you considered an e-journal?

Dear Nurse,
Hi! I’m facing a little dilemma I hope you can help me with.
First of all, I’ve been living with MS for a while now. Plus, I have a full-time job and two young kids. My healthcare provider suggested that I start a symptom journal. She says it helps in a lot of ways. But frankly, it just seems like a big chore. I mean, I want to keep on top of stuff but I guess I don’t really see the value in writing everything down.
What do you think?
Write or Wrong
Dear Write or Wrong,
This is a great question! The bottom line is, you are the best historian of your health and your MS. But I get it, it sounds like just another job that you need to do. But here’s the thing, it’s an important thing.
Detailing what’s going on with you between medical appointments is a great way for you to let your healthcare provider know how you’re doing overall, about specific symptoms, and even about the progression of your MS. It also helps identify if your treatment is working. Does your healthcare provider welcome this type of information? Absolutely! You might even be able to identify trends, and that’s great info for you and your healthcare provider to talk about.
The good news is that your journal does not need to be detailed. You can just jot down quick thoughts, such as “left foot numb” or “feeling fuzzy today.” Electronic tools can make journaling even easier. For example, some smart phones let you write or even dictate notes. You can also send yourself a quick email. Or try this easy-to-use symptom tracker. But find the method that works best for you. And so you don’t get bogged down, only track the days that aren’t so great. You’ll want to note the date and time, then list when a symptom started, stopped, became worse, or got better.
— Nurse Diane, MS One to One™ Nurse

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Network of Pediatric MS Centers

Network of Pediatric MS Centers

In 2006, the National MS Society established a nationwide network of six Pediatric MS Centers to provide comprehensive evaluation and care to children and teens (up to age 18) with MS and related central nervous system (CNS) demyelinating disorders. Today, nine member centers are engaged in research to better understand the cause(s) of MS, the characteristics of these disorders in children, and how best to treat children with MS. The centers offer evaluation, diagnosis, treatment and support to families with child(ren) displaying symptoms suggestive of any CNS demyelinating disorder; a child does not need to have a definite diagnosis of MS in order to be evaluated.

Centers (alphabetical by state)

Center for Pediatric-Onset Demyelinating Disease at the Children's Hospital of Alabama
CHB 314K, 1600 7th Ave South, Birmingham, AL 35233
Center director: Jayne Ness, MD, PhD, 205-996-7850

UCSF Regional Pediatric MS Center
350 Parnassus Avenue, Suite 304, San Francisco, CA 94117
Center director: Emmanuelle Waubant, MD, PhD, 415-353-3939

Pediatric Multiple Sclerosis Center at Loma Linda University Children’s Hospital
2195 Club Center Drive, Suite A, San Bernardino, CA 92408
Center director:  Gregory Aaen, MD, 909-835-1810

Partners Pediatric MS Center at the Massachusetts General Hospital for Children
Yawkey Center for Outpatient Care, Suite 6B, 55 Fruit St., Massachusetts General Hospital, Boston, MA 02114
Center director: Tanuja Chitnis, MD, 617-726-2664

Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s Hospital
Fegan 11, 300 Longwood Avenue, Boston, MA 02115
Center director:  Mark Gorman, MD, 617-355-2751

Mayo Clinic Pediatric MS Center
200 1st St. SW, Rochester, MN 55905
Center directors: Marc A. Patterson, MD & Moses Rodriguez, MD, 507-293-0378

Pediatric MS Center of the Jacobs Neurological Institute
219 Bryant St., Buffalo, NY 14222
Center director: Bianca Weinstock-Guttman, MD, 877-878-7367,

Lourie Center for Pediatric MS at Stony Brook University Hospital
Department of Neurology, HSC-T12-020, Stony Brook University, Stony Brook, NY 11794-8121
Center director: Lauren Krupp, MD, 631-444-7802,

The Blue Bird Circle Clinic for Multiple Sclerosis, Texas Children’s Hospital
6701 Fannin Street, 9th Floor, Houston, TX 77030
Center director:  Timothy Lotze, MD, 832-822-5046

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MS (Multiple Sclerosis) in Children

Although multiple sclerosis (MS) occurs most commonly in adults, it is increasingly being diagnosed in children and teenagers. Of the 400,000 diagnosed cases of MS in the U.S., 8,000 to 10,000 are in children up to 18 years old. Neurologists think there are probably many more children with MS that have not been diagnosed.

How MS Is Different in Children

Multiple sclerosis may manifest itself differently in children and adults. In children, it may begin after a period of neurological symptoms called acute disseminated encephalomyelitis (ADEM). For most children, the symptoms of ADEM -- including headache, delirium, lethargy, coma, seizures, stiff neck, and fever -- are temporary. But other children continue to have symptoms or experience additional symptoms that meet the criteria of MS.
MS is thought to progress more slowly in children than in adults; however, significant disability can occur at an earlier age in people whose MS begins in childhood or adolescence. The cognitive and psychological consequences of MS are likely greater in children and adolescents and may affect academic performance, self-image, and relationships with peers.

MS Symptoms in Children

The symptoms of MS in children are similar to those in adults and may include:
  • Problems with bladder or bowel control
  • Weakness
  • Problems with walking
  • Vision changes
  • Muscle spasms
  • Sensory changes, tingling, or numbness
  • Tremors
In addition, children may experience seizures and lethargy that are not typical in adults.
The symptoms of MS can be erratic. They may be mild or severe. They may last a long time or just a short time.

MS Treatment in Children

Although there is no cure for MS, there are several treatments that can improve life for children with the disease. Treatment of MS in children as well as adults has three main goals: to treat attacks, to prevent future attacks, and to relieve symptoms.

Treating MS Attacks in Children

Corticosteroid medications are used to reduce inflammation in the brain and spinal cord during attacks of MS. The main corticosteroid used for MS attacks is Solu-medrol (methylprednisolone), which is given by IV once a day for three to five days. Sometimes doctors prescribe an oral corticosteroid called prednisone for a short time following the IV medication.
Although most children tolerate corticosteroids well, for some they cause side effects, including moodiness and behavior changes, increases in blood pressure and blood sugar, and stomach irritation. Doctors can treat these problems if necessary.
If corticosteroids alone don’t bring enough improvement, other treatments, including intravenous immunoglobulin (IVIG) and plasma exchange, are available to treat MS attacks.

Preventing Attacks of MS

Although corticosteroids can ease MS attacks, they do not prevent them. Doctors prescribe other types of drugs for that purpose. While decreasing the number of attacks, these drugs may also slow the disease’s progression to disability.

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Wednesday, October 8, 2014

MS Family Planning 201: Breastfeeding, DMTs, and the Risk of Postpartum Relapse

The risk of relapse is higher in the postpartum period, but there are conflicting suggestions for women with MS about reducing this risk. Can exclusive breastfeeding alone prevent relapses? How soon after delivery should DMTs be reintroduced? Are any DMTs safe to take while breastfeeding?

<em>Stillende Mütter</em> by Paula Modersohn-Becker (1876–1907).
Stillende Mütter by Paula Modersohn-Becker (1876–1907).
For any parent, the first few months after delivery are tumultuous—adapting to a new member of the family is tiring and stressful. These two elements make women with relapsing-remitting multiple sclerosis (RRMS) especially vulnerable to a postpartum relapse. While disease-modifying therapies (DMTs) have been shown generally to reduce relapse rates, none of them are indicated for use during lactation. Therefore, the question of when to restart DMTs postpartum remains a difficult one for physicians counseling MS patients who wish to breastfeed their children.

Trying to predict the risk of relapse for any one individual is very difficult. The risk factors for postpartum attacks include the level of disability, the prepregnancy relapse rate (Hughes et al., 2014), and the relapse rate during pregnancy (Coyle, 2014Vukusic et al., 2004). But even so, relapse rates in the prepregnancy year and during pregnancy combined only predict 21.5% (49/227) of relapses.

Continue Reading

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Tuesday, October 7, 2014

Jason Silva Talks Multiple Sclerosis With Inspiring People, Making A Difference

Introducing a video “MS Visionaries: Spotlighting Individuals Making a Difference in the MS Community.”

This two-part series features an interactive and in-depth discussion with MS Visionaries program ambassador Jason Silva, from National Geographic Channel’s “Brain Games”, along with the following MS Visionaries, about their efforts to make a difference in the MS community:

  • Don Fredette, An adaptive wheelchair specialist who works to solve the complex and changing needs of people by creating custom chairs for those who seek increased independence;
  • Mindy Eisenberg, An adaptive yoga instructor who developed a class specifically designed for those who face mind and body a challenges as a result of MS; and
  • Marissa Clark, A physical therapist who specializes in innovative methods that improve the quality of life for patients living with neurological disorders such as MS

The first video in the series launched today and is featured in the health and fitness section of Yahoo’s partner site,

  Click Here  to view this video
Please make sure you double click on the video to see it in the full screen.

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What is MS? - watch this NMSS video

Central Nervous System

What is MS?

A detailed view of MS-related damage in the central nervous system that results in the varied and unpredictable symptoms of the disease.

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More common than anyone suspects, the unspoken issue of sexual dysfunction, affects more than half of the MS population

Sexual Dysfunction in MS
Researchers delved into the private lives of men with multiple sclerosis (MS) in a recent study and discovered that sexual dysfunction is a common MS complication. Although it’s a topic patients may be reluctant to discuss with their neurologists, they should be aware that intimacy problems are often treatable.
Scientists from the Institute of Psychiatry and Neurology in Warsaw, Poland, interviewed 67 men with MS who were members of the National MS Center. The participants also filled out questionnaires and underwent neurological evaluations, all in an attempt to measure their sexual satisfaction.
Of those 67 men, researchers found that more than half complained of erectile dysfunction (ED), roughly a quarter reported decreased interest in sex or had issues reaching climax, and nearly a fifth had difficulty with ejaculation. These results didn’t seem to depend on the patient’s age, the amount of time since his diagnosis, or his level of disability.

A 'Wall of Silence'

The researchers concluded that sexual dysfunction "is highly prevalent but commonly overlooked in MS patients and has a significant impact on their sexual quality of life.” Despite these widespread issues, the researchers found that only 6 percent of the study participants had spoken about these problems with their doctor.
The discrepancy between the number of men who suffer from sexual dysfunction and those who report it to their doctor is probably due to the taboo nature of the topic.
Most likely, the subject doesn't come up, according to Megan Weigel, DNP, ARNP-C, MSCN, in an interview with Healthline, "because sexual dysfunction is a sensitive issue both for the person with the problem and the healthcare provider. However, it is possible that people with MS may not know it can be a symptom of the disease."
But if patients can put aside their discomfort long enough to have a frank conversation with their doctor—dropping the wall of silence—it may be possible to treat the problem.

Sexual Dysfunction Isn’t Just for Men

In an earlier study, the same group of researchers looked at sexual dysfunction in women with MS. While the researchers identified real issues faced by more than three quarters of the patients studied, only 2.2 percent of these women ever told their doctors about their sexual difficulties.
Among the problems women reported were lack of desire, decreased sensation in the genitals, poor lubrication, and an inability to climax. The study found that sexual dysfunction was "less likely in women who assessed their relationship positively but more common in older patients and those who had a positive history of depression.”

Read more on Sexual Dysfunction in MS

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Study Explains Why MS Is More Common in Women than in Men

Ever wonder why women are twice as likely to have MS as men are? Find out what's behind the gender bias.

A newly discovered difference between male and female brains might hold the key to why more women than men are diagnosed with multiple sclerosis (MS).
Researchers at the Washington University School of Medicine in St. Louis noticed that a protein called S1PR2, which controls the permeability of the blood-brain barrier (BBB), is more prevalent in those with MS. Further exploration on both mice and humans revealed that, among people diagnosed with MS, women produced far more of this protein than men.
It's a fact that more women than men are diagnosed with MS, but the reason why has left scientists scratching their heads. According to the National Multiple Sclerosis Society, “MS is at least two to three times more common in women than in men, suggesting that hormones may also play a significant role in determining susceptibility to MS. And some recent studies have suggested that the female to male ratio may be as high as three or four to one.”
This study is the first to reveal a physical difference between the brains of male and female MS patients, but hormones did not appear to play a role in their findings, said senior author Dr. Robyn Klein, in an interview with Healthline. “In our animal studies, estradiol (a sex hormone) did not change levels of S1PR2," she said. "However, there are more studies to be done.”

Genetic Studies Spark 'Bingo' Moment

Klein and her team studied mice with a disease that resembles MS. Like MS, this disease affects female mice more frequently than it does males. Their study examined gene activity in the regions of the brain typically damaged by MS and compared it with areas normally untouched by the disease.

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Multiple Sclerosis & IBD Linked in New Study

IBD and MSA new study entitled “Intestinal Barrier Dysfunction Develops at the Onset of Experimental Autoimmune Encephalomyelitis, and Can Be Induced by Adoptive Transfer of Auto-Reactive T Cells” published in September issue of PloS One, reports that disruption of intestinal homeostasis supports Experimental Autoimmune Encephalomyelitis, the prototypic mouse model of human Multiple sclerosis.
Multiple sclerosis (MS) is an inflammatory autoimmune disorder characterized by targeted destruction of myelin — a major component of the central nervous system — by self-reactive inflammatory T cells. Recent observations suggest an association between MS and inflammatory bowel disease (IBD), with increased incidence of Crohn’s disease (CD) and ulcerative colitis (UC), the two most common types of IBD, among MS patients. IBD is characterized by a chronic inflammation of the gastrointestinal tract, leading to disruption of the intestinal epithelial barrier, a phenomenon known as “leaky gut.” This loss of epithelial barrier function may allow luminal antigens to abnormally activate the host-immune response leading to a systemic autoimmune response. In the present study, the authors evaluated if Experimental Autoimmune Encephalomyelitis (EAE), a model for human MS in rodents, is accompanied by loss of mucosal immune homeostasis.
Read more

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Assessing Patient Adherence - a CME program

MS leaders e-mail logo header 

Dear MS-Leaders Registrant,


Rutgers, The State University of New Jersey and Medical Logix, LLC, are currently offering this educational program certified for CME and CE credit,
at no charge to participants:

Release Date: July 14, 2014
Expiration Date: July 14, 2015

This enduring material has been approved for
AMA PRA Category 1 Credits™ and ANCC contact hours.

Supported by educational grants from
Genzyme, a Sanofi Company and Teva Pharmaceuticals

Jointly Provided by The Center for Continuing and Outreach Education
at Rutgers Biomedical and Health Sciences and Medical Logix, LLC

For additional information and to view the activity, please CLICK HERE

Please keep in mind that you will need to login with your email address and password to access this program. If you forgot your password, click on the "Forgot Password" link in the top right corner of the site.
We hope you enjoy this informative educational program!

The MS-Leaders Team

The Center for Continuing and Outreach Education at
Rutgers Biomedical and Health Sciences
 30 Bergen Street ADMC7, Newark, NJ 07101-1709

Please do not respond to this email directly. Any questions or concerns,

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Sunday, October 5, 2014

What is PLEGRIDY (TM)?

New and now approved—PLEGRIDYTM for relapsing forms of MS

What is PLEGRIDY™ (peginterferon beta-1a)?

PLEGRIDY is a prescription medicine used to treat people with relapsing forms of multiple sclerosis (MS).
It is not known if PLEGRIDY is safe and effective in people under 18 or over 65 years of age.
Do not take PLEGRIDY if you are allergic to interferon beta orpeginterferon beta-1a, or any of the other ingredients in PLEGRIDY.

General information about the safe and effective use of PLEGRIDY
Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. If you would like more information, talk to your healthcare provider or pharmacist. You can ask your healthcare provider or pharmacist for information about PLEGRIDY that is written for health professionals. Do not use PLEGRIDY for a condition for which it was not prescribed. Do not give PLEGRIDY to other people, even if they have the same symptoms that you have. It may harm them. For more information, call 1-800-456-2255.

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