July 2014 Round-Up of MS News and Research

• TMJ is More Prevalent in MS Patients with Mild or Moderate Disability
• Plegridy™ Approved for Adults with RRMS in Europe
• Urinary Disorders and MS: Diagnosis, Treatment, and Quality of Life
• Other studies of interest:  

 Read this post in its entirety:
Hot Topics and MS Research News - July 2014

Rehabilitation is More Effective Against MS Fatigue

Fatigue is one of the most common symptoms of multiple sclerosis (MS) affecting up to 90% of people with MS.  Fatigue has the power to negatively impact any aspect of a person’s life.  The type of fatigue which people with MS experience is often described as a feeling of extreme mental or physical exhaustion.  It can interfere with one’s ability to take care of themselves, function effectively at work, or participate in social activities.

There seems to be no single cause of fatigue in MS, which means that there cannot be only one approach to managing fatigue.  Neurologists will often prescribe medication or recommend rehabilitation (e.g., exercise, energy or fatigue self-management education, and cognitive behavioral therapy) for managing fatigue.  But which approach is more effective?

A number of studies investigating the effects of MS fatigue management strategies exist in the research literature, but until recently there has not been a thorough review comparing the effectiveness of individual types of interventions.  A new review summarizes the available research evaluating three types of fatigue management strategies (exercise, education, and medication) used to target MS fatigue.  Researchers included 25 randomized controlled trials in the review, including 7 medication trials and 18 rehabilitation trials (10 exercise trials and 8 education trials), that involved 1499 people living with MS (Asano et al., 2014).

The goal of the review was to answer the following questions:
    •    How effective are exercise interventions for reducing the impact or severity of self-reported fatigue?
    •    How effective are educational programs for reducing the impact or severity of self-reported fatigue?
    •    How effective are commonly used fatigue medications for reducing the impact or severity of self-reported fatigue?
    •    Are MS fatigue rehabilitation interventions (i.e., exercise and educational programs) more effective than the common MS fatigue medications?

Read this post in its entirety:
Exercise, Education, or Medication: Which is Better for MS-Related Fatigue?

What is Mixed Connective Tissue Disease?

Rheumatology is a complicated field of medicine.  Not only are there more than 100 rheumatic diseases associated with arthritis, there are many conditions which share the same symptoms.  In fact, patients who have features or meet the diagnostic criteria of more than one autoimmune disease may be diagnosed with an overlap syndrome.  Mixed connective tissue disease (MCTD) is one such overlap syndrome.

What is MCTD?

Mixed connective tissue disease is a rheumatic disease combining clinical features of lupus, scleroderma, polymyositis or dermatomyositis, and/or rheumatoid arthritis.  While symptoms may be systemic, they may not be as severe or widespread as compared to if a person developed any one of these diseases alone.  In some cases, MCTD may get worse and evolve into classic systemic sclerosis (scleroderma) or lupus.  MCTD is more common in women than men (approximately 10:1 ratio) and onset usually occurs between 15 and 35 years of age.

Symptoms

Common clinical signs of MCTD include Raynaud’s phenomenon (which may occur years before other symptoms emerge), pain and/or inflammation of multiple joints, swollen hands/puffy fingers, and myositis (muscle inflammation).  Muscle weakness, fevers, and fatigue are also common.

MCTD may cause skin changes such as lupus-like rashes, reddish patches over the knuckles, violet coloring of the eyelids, loss of hair (alopecia), and dilation of small blood vessels around the fingernails or on the face.

Nearly 80% of people with MCTD develop abnormalities in lung function which may lead to breathing difficulties and/or pulmonary hypertension.  Potential heart involvement includes pericarditis, myocarditis, and aortic insufficiency.

Patients may also develop problems swallowing, gastrointestinal difficulties, kidney disease, or enlargement of the spleen or liver.  Anemia and leukopenia develop in 30-40% of cases.

Neurological abnormalities may include sensory disturbances in various areas of the body (such as trigeminal neuralgia and peripheral neuropathy), seizures, vascular headaches, cerebral thrombosis, or cognitive dysfunction.

Read this post in its entirety:
What is Mixed Connective Tissue Disease?

It Really Might be a Bladder Infection, Not an MS Relapse

No matter how much I research MS, write about MS, and talk about MS as well as other health issues, I can still mis-read my own body signals and fail to go with the obvious.  I am not a medical expert, but a fellow patient learning to live with this disease as best I can.

I’m not sure how many times a community member has come online to ask advice about a possible relapse.  I usually tell them about pseudoexacerbations that can be caused by heat sensitivity or infection.  And, I always suggest that they call their neurologist.  I should listen to my own advice.

In my own case, I had initially considered UTI, but disregarded the possibility because  the symptoms were not constant.  I didn’t have a fever and didn’t ‘feel sick.’  I failed to refresh my memory and look up the common symptoms of a bladder infection which include:
    •    Cloudy or bloody urine, which may have a foul or strong odor.
    •    Low fever in some people.
    •    Pain or burning with urination.
    •    Pressure or cramping in the lower abdomen or back.
    •    Strong need to urinate often, even right after the bladder has been emptied.

My urine did not have any odor and I didn’t have a fever.  The pain with urination was temporary and I didn’t have any cramping.  My primary symptom, the strong urge to urinate, could easily be confused for MS-related bladder dysfunction.

So what have I learned from this experience?  Don’t make assumptions about bladder symptoms.  Always get tested, especially when it’s as simple as peeing in a cup.

Be well and I hope you are having a great summer!!

Read this post in its entirety:

Bladder Dysfunction and MS: Always Test for Infection Before Using Steroids

Writing as Advocacy

Becoming an advocate is easier than you might think.  It can be as simple as using your words or actions to demonstrate support for a particular cause, ideology, or group of people.  Advocates often educate and inform, make recommendations, and support, defend, or plead on behalf of others.

At the heart of advocacy is a desire to influence thoughts, behavior, and policy.  Skilled advocates are able to motivate others to take a desired action.  They can also help to dispel myths and fight stigma, both of which are important for the chronic illness community.  To be an advocate, you don’t have to be an expert in public policy or become a motivational speaker.  You just need to be willing to speak out.

The most successful advocates become masters of persuasion.  They use opinion, fact, and convincing arguments to change behavior and mindsets, influence public policy, educate people, and build support for specific ideas.  Writing can be an effective tool for advocacy, but it is important to make sure that your message will grab the reader’s attention.

Who are you writing for?
Identify who you are trying to persuade or inform.  Consider their values, needs, and perspective.  What questions or objections will they have to your call to action?  What is their experience and do they share your perspective and concerns?  Once you know your audience, you can tailor your message accordingly.

If you’re advocating for better understanding of the issues related to living with RA and your target audience includes people living with RA, friends or family members, or healthcare professionals, you may not need to include detailed explanations of the disease.  But members of the general public, government officials, newspapers or magazines may need more background or supportive information to provide context and significance for your appeal.

After you know who you are writing for, it is important to make sure that they read what you have written.  And if they read it, will they understand it? And if they understand it, will they do what you want them to do?

Read this post in its entirety:

Advocacy: The Power of Words to Motivate Action