June 2014 Round-Up of MS News and Research

How common is sexual dysfunction in women with MS?
Sexual dysfunction is very common in MS but it is not highly discussed.  Studies report that up to 84.6% of women with MS experience at least one sexual dysfunction.  Approximately 34.8% of MS women experience 5 or more sexual dysfunctions while 12.9% experience 10 or more.  Symptoms include lower sex drive, decreased lubrication, poor clitoral erection, and lack of orgasm.  Other MS symptoms, such as bladder and bowel dysfunction, spasticity, pain, fatigue, depression, anxiety, and side effects of medication often contribute to sexual dysfunction.  More research is needed, but drugs such as sildenafil (a and alpha-blockers may improve lubrication.  Water-based lubricants and estrogen therapy may help with vaginal dryness, burning, and painful intercourse.  As antidepressants can interfere with orgasm, lower doses or a change of medication may be recommended.  Because of physical limitations of MS, women with MS may be advised to plan ahead for sex to manage timing, positioning, and fatigue, as well as prevent unwanted urinary or fecal incontinence.  Sex aids and extra-genital stimulation can provide erotic sensations.  Counseling can also help couples improve communication skills and increase sexual satisfaction (Cordeau, 2014).

Anti-seizure drug may be effective against pseudobulbar affect (PBA)
Pseudobulbar affect (PBA), also known as emotional incontinence, is a neurological disorder characterized by involuntary or uncontrollable episodes of laughing and/or crying.  It can occur in patients with an underlying neurological disease such as MS, Alzheimer’s, Parkinson’s, stroke, or traumatic brain injury.  Patients with PBA have an impaired ability to control their emotional reactions.  Very few studies have been published on PBA in people with MS and reported prevalence estimates range from 6.5 to 95%.  Dextromethorphan plus quinidine (Nuedexta) is the only FDA approved treatment for PBA.  A recent case report describes a 60 year old woman with MS who experienced incessant crying.  A brain MRI showed a new lesion next to her corpus callosum.  Her symptoms resolved within 3 days after doctors prescribed valproic acid (Depakote), but did not respond to Nuedexta (Johnson, 2014).

Do you want to know more about how the oral drugs for MS work?  
You can find out in the article, “Molecular pharmacodynamics of new oral drugs used in the treatment of multiple sclerosis,” published in the journal, Drug Design, Development and Therapy.  This article discusses the mechanism of action of each of the oral MS drugs, approved and still in development: fingolimod (Gilenya, Novartis), dimethyl fumarate (Tecfidera, Biogen Idec), teriflunomide (Aubagio, Genzyme), and laquinimod (Nerventra, Teva, not yet approved for use).  It also discusses the effects of each drug on the immune system, permeability of the blood-brain-barrier, and CNS cells (di Nuzzo, 2014).

Read this post in its entirety:

Hot Topics and MS Research News for June 2014

Cancer Mistaken For RA in Children

Musculoskeletal pain and nonspecific symptoms are often the initial signs of cancer in about 20% of children who develop pediatric leukemia.  Because of similar symptoms, childhood leukemia can masquerade as juvenile idiopathic arthritis, osteomyelitis, transient synovitis, or septic arthritis, resulting in delayed treatment.

What is leukemia?
Leukemia is a type of cancer that causes bone marrow to produce large numbers of abnormal white blood cells that enter the bloodstream and do not function properly.  Leukemia accounts for 33-41% of all malignancies in children under 15 years of age with approximately 3250 children diagnosed each year in the United States.

Each type of leukemia is named for the blood cell that’s affected.  The four most common types of leukemia are acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), chronic myeloid leukemia (CML), and chronic lymphocytic leukemia (CLL).  Acute lymphoblastic leukemia (ALL) represents about 75-85% of all cases of childhood leukemia and is the form which is known to mimic arthritis.  Symptoms are often vague and nonspecific.

Common leukemia signs and symptoms include:
    •    Fever or chills
    •    Persistent fatigue, weakness
    •    Frequent or severe infections
    •    Losing weight without trying
    •    Swollen lymph nodes, enlarged liver or spleen
    •    Easy bleeding or bruising
    •    Recurrent nosebleeds
    •    Tiny red spots in your skin (petechiae)
    •    Excessive sweating, especially at night
    •    Bone pain or tenderness
    •    Hematological abnormalities (anemia, low white blood cell count, low platelet count, circulating blasts)

How does leukemia look like juvenile arthritis?
Musculoskeletal symptoms are the primary complaint in 14% to 30% of pediatric ALL cases, sometimes before changes in peripheral blood are evident.  Several case reports exist in the medical literature discussing patients who are initially (mis)diagnosed with juvenile idiopathic arthritis (JIA) due to bone pain and joint swelling, often in the lower extremities (ankle, knee, hip), to later be diagnosed with ALL.  About 7% of children with ALL who initially have musculoskeletal manifestations meet diagnostic criteria for JIA.

What are the best ways to distinguish leukemia from arthritis in children?
Studies have identified three important features that predict a diagnosis of ALL and differentiate it from JIA, including:
    •    Low white blood cell count (leukopenia)
    •    Low-normal platelet count (thrombocytopenia)
    •    Nocturnal pain


Read this post in its entirety:

Childhood Leukemia Mistaken for Juvenile Rheumatoid Arthritis

Enter the #LiveBold Anti-Stigma Photo Contest

Fatigue and heat-sensitivity are my biggest hurdles to overcome during the summer months.  Each of these MS symptoms can wipe me out and sometimes I don’t feel like fighting back.  But other times, I become determined to not let them get in the way of enjoying life.  I choose to #LiveBold.

During the past two weekends, Rob and I have been enjoying Saturday night after-hours viewing of classic Indiana Jones movies at the local movie theater.  Initially the thought of watching midnight showings didn’t sound appealing or realistic.  However, I made a decision; I decided to stop what I was doing, lay down, and make myself close my eyes on Saturday afternoon to take a good long nap.  I wasn’t being lazy.  On the contrary, I took control, fought back, and decided to enjoy life despite MS.

That is what it means to live boldly.  It’s about finding the strength to persevere and thrive despite MS.  It’s about overcoming challenges and the accomplishments that make you proud.

We live boldly in many ways every day.  This weekend, I did so by taking a nap.  For Jodi Edwards, it is running.  For you, it might be taking care of your family, socializing with friends, or playing a musical instrument.  Or perhaps it is gardening, taking a walk around the block, traveling, or raising awareness of MS.  The possibilities are endless.

How do you choose to #LiveBold?  
HealthCentral wants to give you the opportunity to share your story and help to stamp out stigmas associated with chronic disease in the process.  The #LiveBold anti-stigma photo campaign is about telling the story of your accomplishments, no matter how big, small, or in between.  You can also win up to $500!

Here’s what you do to join the campaign and enter the contest:

• Submit a photo that shows how you Live Bold accompanied by a 250-word description of your story.  
• Enter on the contest page here on HealthCentral or on the #LiveBold Facebook page by Friday, July 11, 2014.  
• Share your story on social media using the hashtag #LiveBold.  
• Voting for the contest begins July 15 and continues through August 8.  The entries with the most votes will be selected to win $500 (1st place), $250 (2nd place), or $100 (3rd place).  
• You must be 18 years of age or older to enter.

To kick off the campaign, join @HealthCentral for an anti-stigma tweet chat on June 25th at 2pm EST.

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HealthCentral Launches the #LiveBold Anti-Stigma Photo Contest

Living with MS and Social Stigmas

Social stigmas are an unfortunate part of our society.  A social stigma is the extreme disapproval of a person or group of people based on a perception that something sets them apart from what is ‘normal’ or socially acceptable.  Social stigmas exist around mental illness, physical disability, disease, race, education, religion, ideology, and more.
Removing the stigma of MS.

One theory behind the many efforts to raise awareness of multiple sclerosis is to begin to remove the stigma of MS.  By educating people about the disease, we (those affected by MS) hopefully can show how our differences caused by MS do not make us so different after all.  In concert with that, increased awareness and knowledge may help others to recognize that our differences, whether visible or invisible, do set us apart from the average person and necessitate special considerations.

“I’m not drunk; I just have MS.”

This phrase is commonly used by people with MS to laugh at the effects of the disease.  But it also seems to establish that there is an unspoken hierarchy amongst stigmas.  Apparently walking around in an uncontrolled drunken manner (or stumbling while hammered off your ass, so to speak) is less acceptable than walking on the wobbly legs of someone who has impaired balance, coordination, or strength.  In essence, the phrase is emphasizing that ‘I’d rather be perceived as physically disabled, than as someone who doesn’t know when to stop chugging alcohol.’

“I’m not stupid; I just have cognitive information processing difficulties due to MS.”

Read this post in its entirety:

Living with MS: Overcoming Self-imposed Stigma

Diseases Easily Confused with RA

Making a diagnosis of rheumatoid arthritis is often tricky. With no single test that confirms or eliminates the disease, the diagnosis of RA is based on a physical exam, patient history, laboratory tests and often imaging. However, symptoms of RA, such as pain, swelling and fatigue, are not exclusive to the disease. And correct diagnosis is important in choosing an appropriate treatment plan.

A number of diseases, such as lupus, fibromyalgia or Sjögren’s syndrome, may easily be confused with RA, or coexist in a patient. Arthritis symptoms might develop following certain infections, such as Lyme disease, tuberculosis, gastrointestinal infection or sexually-transmitted diseases. Patients with certain cancers, such as large granular lymphocyte (LGL) leukemia, have an increased incidence of RA, and acute leukemia in children may even be misdiagnosed as idiopathic juvenile arthritis.

In addition to the conditions mentioned above, here are seven diseases that could be misdiagnosed as rheumatoid arthritis:

Osteoarthritis (OA)

Osteoarthritis is the most common condition misdiagnosed as rheumatoid arthritis, according to a recent Colombian study. Of 2,478 patients referred by general practitioners to a specialized center with a presumed diagnosis of RA, it was found that 993 patients (40.1%) had been misdiagnosed. The correct diagnosis in 65 percent of the misdiagnosed patients was osteoarthritis (12).

Potentially confused with seronegative RA, inflammatory osteoarthritis is an aggressive, erosive subtype of primary osteoarthritis that affects 5 to 10 percent of those with OA. The periodic inflammation results in knobby, painful, inflamed knuckles and fingers, while the wrists and metacarpophalangeal joints are not involved. As a form of OA, blood tests show no increases in erythrocyte sedimentation rate (ESR) or C-reactive protein, and antinuclear antibody and rheumatoid factor testing will be negative (7).

Reactive arthritis (ReA)

Reactive arthritis (ReA), formerly called Reiter’s syndrome, is an autoimmune condition that develops in response to an infection. It has been associated with gastrointestinal (GI) infections with Shigella, Salmonella, Campylobacter and other organisms, as well as with genitourinary (GU) infections (especially with chlamydia trachomatis) spread through sexual contact. Symptoms, which may include arthritis, conjunctivitis, or urethritis, usually occur about one month following infection. ReA affects more men than women.

Read this post in its entirety:

Conditions that Resemble Rheumatoid Arthritis

Watch 'When I Walk" on PBS

(Photo credit: Long Shot Factory)

Mark your calendars and set your alarms.  On Monday, June 23, 2014, PBS stations throughout the country will premiere When I Walk, an honest, unflinching, yet heartfelt, look at the experience of MS through the eyes of accomplished filmmaker and director Jason DaSilva and his family.  I had the honor of previewing When I Walk last summer and believe that it stands out as a testament to strength, hope, humanity, and resilience.
When I Walk, premiered at the 2013 Sundance Film Festival to rave reviews.  It opens the 2014 Point of View series on PBS on Monday, June 23, 2014 at 10PM and will be available for streaming through July 23, 2014.  When I Walk (2013) is Jason’s 3rd feature-length film following Lest We Forget (2003) and From the Mouthpiece on Back (2008).

Check PBS.org for local listings.

By the age of 25, Jason DaSilva had already demonstrated his skills as artist, activist, storyteller, and filmmaker.  A world traveler and multicultural artist living in North America, Jason prefers to turn his camera toward places and concerns that are often mistakenly or intentionally swept aside and to bring those issues into the light.  His first short film Olivia’s Puzzle (2001) premiered at the 2003 Sundance Film Festival, received an Oscar nod, and was broadcast on HBO and PBS/POV in 2004.  His next two films in the series, A Song for Daniel (2005) and Twins of Mankala (2006) also aired on PBS/POV.

Only months after Jason had been diagnosed with primary progressive MS, a turning point was captured on film during a family day at the beach.  Jason’s legs gave out and he fell to his knees in the sand.  Falling had become a somewhat familiar experience, but this time was different.  This time, Jason couldn’t get up by himself; he needed assistance while he laughed at the ridiculousness of the situation.  Jason’s MS was becoming visible to the outside world.

What does MS look like?  Aside from outward signs of disability that primarily affect mobility, what does MS look like inside the person?  I’m not talking about brain tissue as seen on MRI scans, I’m thinking of what the journey of having MS looks like and feels like to the individual and his/her family.  That’s not something which can be captured in a single interview, magazine article, or cameo in a TV show.

After that day on beach, Jason decided to turn his camera toward himself and chronicle the relentless effects of the disease in an unflinching, uncensored manner.  When I Walk covers Jason’s first 7 years living with MS, as he goes from being wobbly-legged on the beach, to using a walker in public, to relying on a scooter full time.

Jason exposes himself, heart and soul, with an honesty that you don’t often see on screen.  We experience the physical and emotional roller coaster as MS begins to affect Jason’s vision and take away the use of his hands, while Jason searches for answers and possible cures.  We witness the joy as Jason finds his soulmate and they get married and begin a family together.  We can also hear the dark sadness as Jason explains that he couldn’t go with his wife to the hospital when she miscarried because accessible cabs were not available.

When I Walk may make some people uncomfortable in its frankness as it reveals the emotions of being trapped inside a body which increasingly fails the occupant.  However, it isn’t a gloomy, woe-is-me tale.  When I Walk captures the joy of living in the moment and is a testament to courage, love, and the human spirit.  We finally get to see what MS looks like on the inside for one young man and his family struggling with MS.

In creating the film, Jason says that being forced to hand over the camera to others as his vision deteriorated was difficult and the most frustrating part of making the film, but it led to discovering a new focus in filmmaking.

“I used to have total control over the camera and I was a meticulous shooter, so you can imagine that trying to give on-the-fly lessons in visual composition and camera exposure to my mother was torture! The beautiful cinematography of my past was sacrificed, and capturing emotion became my priority. I found a new love for the expression of emotion, the subtlety of story and quietly compelling moments of human experience.”

Jason and his filmmaking partner and wife Alice Cook are working on a new project.  They have developed AXS Map (access map), a crowd-sourced tool for sharing reviews on the wheelchair accessibility of businesses and places.  AXS Map is available online or via mobile web, as well as Android and iPhone applications. To learn more and start mapping, visit www.axsmap.com.

Top Herbal Supplements Shown to Help RA

Boswellia serrata (Indian Frankincense, Boswellin, Salai Guggal)
Frankincense, or boswellia serrata, is derived from the bark of the Boswellia tree native to Arabia and India.  Boswellia serrata extracts are used in Ayurvedic for their anti-inflammatory and analgesic properties.  Studies in OA have found that patients taking boswellia reported less knee pain, better mobility, and an ability to walk longer distances.  It has also been shown to slow cartilage damage.  A British review (Ernst 2008) found boswellia extracts to be safe and effective for both OA and RA, however results of studies in RA were not statistically significant.

Cat’s Claw (Uncaria tomentosa)
Uncaria tomentosa, known as Cat’s Claw, comes from a woody vine that grows in parts of South and Central America.  It has been shown to have an anti-inflammatory effect against tumor necrosis factor (TNF)-alpha, the same inflammatory target as a number biological drugs for RA.  One study found that people with RA who took cat’s claw in conjunction with sulfasalazine or hydroxychloroquine experienced a 53% reduction in painful joints compared to 24% reduction with placebo (Mur 2002).  Cat’s claw is believed to stimulate the immune system, so theoretically it may interfere with immunosuppressant medications such as azathioprine, cyclosporine, prednisone, and other corticosteroids (Natural Medicines Comprehensive Database). 

Curcumin (Turmeric, Curcuma longa, Curcuma domestica)
Turmeric, the yellow-colored spice used in Indian curries, is derived from the root of the Turmeric plant native to India and Indonesia which is related to the ginger plant.  Curcumin, a component of tumeric, has anti-inflammatory and analgesic properties that can reduce the pain, inflammation, and stiffness associated with RA.  It has been shown to regulate inflammatory cytokines such as IL-6, IL-12, TNF-alpha and IFN-gamma and associated JAK-STAT pathways in immune cells (Bright 2007), as well as certain enzymes including cyclooxygenase-2 (COX-2) (Bengmark 2006), the target of the pain medication Celebrex. In a small pilot study, a curcumin product called BCM-95 reduced joint pain and swelling in patients with active RA better than the NSAID diclofenac sodium (50 mg) (Chandran 2012).

Read this post in its entirety:

Top 5 Herbal Supplements for RA

Redefining MS: New Names for MS Subtypes

During the past 18 years, much has been learned regarding the pathology of MS including early manifestations of the disease which precede confirmed diagnosis.  This increased understanding of MS and limitations in the current terminology used to describe MS prompted a re-examination of the disease subtypes by the International Advisory Committee on Clinical Trials of MS which convened in October 2012.  Consensus and recommendations offered by the advisory committee were published online in the journal Neurology on World MS Day, May 28, 2014.

The committee recommends that the core descriptions of relapsing and progressive disease should be maintained, with certain modifications and clarifications.  Suggested modifications include assessment of disease activity, as defined by clinical relapses and/or MRI activity (contrast-enhancing lesions; new or unequivocally enlarging T2 lesions assessed at least annually), and clinical evidence of disease progression independent of relapses over a given period of time in patients who have a progressive disease course (PPMS or SPMS).

The following are examples of newly proposed descriptions that consider measures of disease activity.  A patient with RRMS who has a new gadolinium-enhancing lesion would be considered to be “RR–active.”  Conversely, a patient with a relapsing course but no relapses, gadolinium-enhancing activity, or new or enlarging T2 lesions would be “RR-not active.”  A patient with PPMS with no acute attacks and no MRI activity would be “PP–not active.”  However, a patient with PPMS who has an acute attack would be “PP–active,” replacing the current progressive-relapsing MS definition.

Read this post in its entirety:

Redefining MS

Carnival of MS Bloggers #156

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

“Ouchies on the Inside” and other lies I tell my boys

by Jamia at MS is a Mother...

As mothers, I think that we are given the permission from the Universe to lie to our kids. And not really big lies, but little lies that help smooth out tough conversations.

Lies like, “This is going to hurt me more than it will hurt you” as we rip band-aids off of “boo-boos”. Little lies like, “We will be there before you know it…” knowing full well that the car ride to the amusement park is at least an hour away and there is a traffic jam.

So as I continue to embark on my motherhood journey, I too, have started telling these same little lies to smooth out difficult questions that my four year old is fond of asking me.

But one question that caught me off guard that I didn’t have a little lie to tell was this: “Mommy why do you get tired all the time and why do you walk funny sometimes?”

The dreaded questions that I was hoping not to have to answer for at least another year were already being asked! As a mother living with relapsing multiple sclerosis, I try very hard to mask those tougher days by announcing to the family that “Today, Mommy is moving like a robot “which means that I will be plodding around the house shifting my weight from side-to-side because my legs are agitated by the effects of Multiple Sclerosis leaving lesions on my spinal cord that at times will affect my gait and balance. Being “Mommy robot” sounds a bit more fun and allows us to keep the situation light. Sometime I do walk funny and my gait is off do to my MS, and becoming a “Mommy Robot” puts things into perspective.

But on this day I decided that not every MS manifestation I could have could be attributed to “Mommy Robot”. So as he waits for an answer, I get the perfect way to explain multiple sclerosis in a way that my two and four year old will understand.

So I casually say, “Jacks when you fall and hurt yourself, what do you say?” Jacks looks at me a bit annoyed because this is NOT the answer to his question. But being a good little boy he says, “Ouchy.”

“Good” I say. “And what if you fell and hurt yourself all over, what would you say then?”

Jacks cocks his head to one side and says very confidently, “Ouchies, Mommy. I would have “ouchies” all over the place!” He spreads his arms as far apart as he can.

So I take a breath and continue, “So guess what Jacks? Mommy has “ouchies” too.” I say matter-of –factly as he runs to me looking all over my arms and legs.

“Where mommy? Where are your ouchies? I don’t see them?” His big brown eyes filled with a bit of concern that almost makes me want to cry. But I keep going.

“Well Mommy has “ouchies on the inside” of my body where you and I can’t see them. That is why I get tired and walk funny sometimes. Mommy’s “ouchies on the inside” are “acting up.”

I stop talking and look at him. He sits silently and I figure that this was a bit too abstract and maybe I should have kept up with the “Mommy robot” story.

A little lie to smooth out a difficult conversation.

So then this is when I knew that as much as we mothers like to shield our children from uncertain truths, they show us that they can handle it. Jacks looks up at me and starts planting kisses all over my face and arms and legs. I start laughing at this sudden display of affection. And before I knew it my little Dylan has joined the party.

“Jacks, what are you guys doing? “ I say as I laugh because their kisses are tickling me. And the two of them have now knocked me over and we are all on the floor.

“Kissing all of your “ouchies” away, Mommy. Feel better now?” he asks as Dylan echoes my answer with some of his indiscernible toddler ramblings.

And at that moment I did feel better. Much better.

Telling the truth can also smooth out difficult conversations. Lesson learned. Another stamp in my passport: MOTHERHOOD.


This concludes the 156th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 3, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 1, 2014.

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