Unemployed Persons with MS Perceive Greater Cognitive Dysfunction

A recent Dutch study examined the relationship between subjective and objective executive functioning and employment status in relapsing-remitting MS patients (n=55; 85 percent female; mean age: 47 years; 36 percent employed). Patients underwent neurological, cognitive and psychological assessments at their homes, including an extensive battery of executive tests.

Compared to employed patients, those who were unemployed experienced:

• Longer disease duration
• Higher distractibility; difficulty sustaining attention
• More cognitive fatigue
• More difficulties with organizing and planning (reported by 60 percent of the unemployed patients, but only 25 percent of employed patients)

The employed group consisted of RRMS patients who had a paid job (n=20), either full-time (15 percent), part-time (55 percent), or less than 12 hours a week (25 percent). The unemployed group consisted of patients without a paid job, including homemakers, volunteers, patients receiving disability or unemployment benefits, patients on prolonged medical leave, or early retirement.

Researchers observed below average executive performance in 4-51 percent of the RRMS patients on some aspect of executive functioning, with the highest percentages related to decreased processing speed (in 20 percent of patients) and impaired performance related to visuospatial memory and response (in 51 percent). Possible influential factors such as age, educational level, physical functioning, and self-reported depression, anxiety, physical and social fatigue did not differ between groups.

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Employment and MS: Self-Reported Cognitive Problems in the Unemployed

Does Your Doctor Show Empathy?

Researchers in Italy conducted a study to measure patient expressions of emotion during outpatient consultations and neurologist responses to those expressions. Patient and neurologist characteristics likely to affect both outcomes were also explored. Levels of anxiety and depression were measured in 88 patients with MS (or suspected MS) before an initial consultation with a neurologist. Consultations with 10 neurologists at four MS Italian centers were recorded and later analyzed for patient expressions of emotional cues or explicitly expressed concerns, spontaneous or elicited, and doctor response.

During the 88 consultants, patients expressed 492 cues and 45 concerns (median 4 cues and 1 concern per consultation). The most common cues were verbal hints to hidden concerns (41%), followed by neutral expressions referring to stressful life events/situations (26%). Patient anxiety was directly associated with emotional expressions, while older age of patients and neurologists, and second opinion consultants, were inversely associated with patient emotional expression.

Most of the time neurologists reacted to patient expressions of emotions by reducing the opportunity to explore the emotion (by changing the subject, ignoring the content of the cue, or giving medical advice) for 58% of cues and 76% of concerns. Doctors were more than twice as likely to give these ‘space reduction’ type responses when speaking with anxious patients.

Emotional cues and concerns

‘Concerns’ are clear, unambiguous verbalizations of unpleasant current or recent emotions, with or without an indication of their importance. ‘Cues’ are hints (verbal or nonverbal) which suggest an underlying unpleasant emotion. Cues/concerns can be expressed spontaneously by the patient or elicited by the healthcare provider. When a patient expresses cues/concerns spontaneously, the aim is often to bring up topics that have been neglected, or not adequately explored.

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Neurologists Need to Better Empathize with MS Patients

Just Got Pregnant and Take MS Drugs? Here’s What You Should Do

Learning that you are pregnant can be an exciting event. But unexpectedly becoming pregnant while you are taking powerful medications can cause panic and concern. For many medications, research studies have not been thoroughly conducted to ascertain the safety of specific medication use before or during pregnancy.

What to do once you learn you are pregnant

• Contact your doctor. The best person equipped to work with you in deciding what you need to do to ensure the safety of your unborn child is your healthcare provider. If you have MS, contact your neurologist. If you have RA, contact your rheumatologist. You get the idea.
• Women who become pregnant while using prescription medication can contribute to the body of evidence-based information regarding the exposure of medications during pregnancy and while breastfeeding. Contact MotherToBaby.org, a service of the non-profit Organization of Teratology Information Specialists (OTIS), to speak with experts, obtain information, and register with research studies. 
• Contact the manufacturer of the medications you are taking. Some companies offer programs that enroll patients who become pregnant into studies to track their progress and outcomes.

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Pregnant with MS: Drug Exposure

Thank You For Reading! 1,000,000 and counting

When I started this blog in 2007, I had no idea where it would take me...literally across the globe.

I've met an amazing group of individuals who live with strength, beauty, and grace in the face of adversity. I've met professionals who are passionate about their work and want to improve the lives of people living with chronic disease.

The MS and RA communities are full of people who lift each other up and I'm pleased to be able to contribute to our collective body of support and knowledge.

Thank you for making me, and my blog, part of your journey as a patient, caregiver, loved one, or friend.

***This blog recently surpassed 1,000,000 page views counted since May 2010.***

Thank you for visiting and reading!!

Self-Pay Discount Offered by Hospital Patient Billing Department

A recent experience with the local hospital following a round of Rituxan treatment demonstrated that the local hospital has put in place patient-friendly policies.

During the conversation with patient billing, I learned that the $9,186 charge for a single Rituxan infusion had been reduced since the system had incorrectly designated my account as self-pay. The discount was a whooping 50 percent!!

If I were a patient who truly did not have health insurance, this would be great. To get a discount without having to ask or negotiate for it. How amazing is that?!

I’m glad that I do have insurance coverage and that the drug company will pick up my share of the cost for the drug portion of the treatment. But it's nice to know that my hospital has put policies in place that help patients obtain and pay for treatment. Check with you hospital to see if they offer similar discounts—it could make a real difference!

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Hospital Offers Self-Pay Discount to Patients

Gadolinium Can Cause Troublesome Side-Effects

Reported by ProPublica, patients who have undergone MRI with contrast have been experiencing concerning side-effects, such as cognitive effects. It is known that patients with impaired kidney function who are unable to excrete gadolinium should avoid contrast agents. However, three recent studies reveal that even patients with healthy kidneys are retaining traces of gadolinium, a potentially toxic metal, in different parts of the body.

Of the nine gadolinium-based contrast agents sold in the US, Omniscan and Magnevist are the ones causing problems. Radiologists are encouraged to change their prescribing habits, rather than stop using contrast agents because of their proven benefits to patients.

In a statement, an FDA spokesperson said the agency is “carefully reviewing” the new studies to “better understand the potential consequences to determine what further action is needed, which may include taking steps to ensure the public is aware of these preliminary findings.”

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Problems with Gadolinium MRI Contrast Agent

Building Your Healthcare Team

Finding an MS doctor

Being diagnosed with multiple sclerosis means that you will come into contact with several different types of healthcare providers. The most important doctor you will need is a neurologist, preferably one who specializes in multiple sclerosis.

Here are a few ways you can find an MS doctor in your area:

• Contact the National MS Society to request a list of recommended MS doctors.
• Search for an MS Center in your area that is part of the Consortium of MS Centers.
• Ask your primary care physician for a recommendation.
• Talk to other MS patients at support group meetings or dinner seminars hosted by pharmaceutical companies or MS organizations.
• Contact your insurance company for a list of preferred providers covered under your insurance plan; then cross-reference this list with suggestions from above.

Who else should be part of my medical team?

Routine care: As a person with MS, you need to continue routine preventative care, such as annual exams and routine testing (e.g. laboratory testing, mammogram, colonoscopy). Core members of a solid healthcare team – primary care physician, eye doctor, and dentist – can help to catch many illnesses in their early stages. Your primary care doctor can also help to coordinate care among specialty physicians.

Specialty care: Many MS clinics have an MS-certified nurse on staff in addition to an MS neurologist. The MS nurse can be on the frontline – coordinating care, providing patient education, and helping patients access services. If the MS nurse is also certified as a nurse practitioner, he/she can order tests and prescribe treatments. A common specialist for MS patients is the urologist, who is a physician who specializes in treating urinary and kidney problems, as well as sexual function.

Rehabilitative care: Physical/occupational therapists become important members of any comprehensive MS team. Contrary to what you might think, you do not need to be significantly disabled to benefit from the expertise of a therapist who works with neurological patients. A physiatrist is a doctor who specializes in physical medication and rehabilitation that may lead the rehabilitation team.

The physical therapist can help you develop an exercise program to improve strength, coordination and balance, teach you how to appropriately use mobility aids, and recommend fatigue-management strategies.

The occupational therapist can suggest home and work space modifications, adaptive equipment, and exercises to help conserve energy, function more efficiently, and improve quality of life. The occupational therapist can help you develop strategies to overcome cognitive issues and other MS symptoms.

The speech/language pathologist not only helps you overcome problems with speech and communication, but evaluates problems with swallowing. The speech/language pathologist works with the physical therapist and nutritionist to help teach you how to eat safely.

Mental health care: MS can lead to emotional changes and cognitive challenges. Licensed clinical social workers and psychologists are mental health professionals who evaluate mood changes (such as depression or anxiety), provide counseling services, connect individuals with services in their community, and help people navigate the challenges posed by MS. Neuropsychologists who specialize in the evaluation and treatment of cognitive changes can teach strategies to compensate for problems with memory, attention, and problem-solving.

Who is part of your personal MS healthcare team?

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Building Your MS Healthcare Team

What Do You Do When Your Doctor Retires?

I’ve been transferred from older retiring doctors to young doctors so many times. After I moved to the DC area, I needed a new eye doctor and asked for a recommendation from my longtime doctor in Oklahoma who had known me for almost 30 years. He recommended a former classmate who had a great reputation. After a few years, and my first bout of optic neuritis, this optometrist welcomed a younger doctor to the practice to whom he eventually sold the practice. The transition went smoothly enough but every once in a while I contemplate how I have more years under my belt as an eye patient (since the age of four) than my new eye doctor has been alive.

A similar situation occurred when my dentist, partially chosen because he was also a trombone player and understood the unique needs of a performing musician, brought on a new partner who eventually took over the practice.

I guess that’s just part of growing older, as there are more and more people younger than you.

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When Your Doctor Retires

Lymph Vessels Surround Brain, New Research Shows

In a paradigm-shifting discovery, neuroscientists at the University of Virginia School of Medicine have found that the brain is directly connected to the immune system by lymphatic vessels that were previously undiscovered, and not thought to exist, defying current textbook teachings. The finding may have substantial implications in the study and treatment of major neurological diseases, including multiple sclerosis.

"We believe that for every neurological disease that has an immune component to it, these vessels may play a major role," Jonathan Kipnis, PhD, professor in the UVA Department of Neuroscience and director of UVA’s Center for Brain Immunology and Glia (BIG) said in a press release. "Hard to imagine that these vessels would not be involved in a [neurological] disease with an immune component."

‘They'll have to change the textbooks.’

Previously thought to end at the base of the brain, the lymphatic system is comprised of vessels that carry lymph, a clear-to-white fluid filled with white blood cells that help remove toxins from the body. The lymphatic system has been very well mapped and is known to be connected to various systems in the body, but this is the first time that it has been detected in the tissues surrounding the brain, known as the meninges.

Maps of the lymphatic system: old (left) and updated to reflect UVA's discovery.

Credit: University of Virginia Health System

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Immune System is Connected to the Brain, Groundbreaking Research Shows

Welcome Amy Back to HealthCentral

Exciting news! 

It's June, it's almost summer, and Amy Gurowitz - patient advocate, superb writer, and founder of the non-profit MS SoftServe - is returning to the MS HealthCentral team. Living with MS for 26 years, Amy combines humor with humanness in her writing, especially when it comes to discussing how MS impacts one’s life. 

Please subscribe to Amy’s posts so that you won’t miss a single article. And follow Amy on Twitter and Facebook while you're at it!

Follow me on Twitter and subscribe to my own posts, too. Check out the latest posts from the community here. 

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MS Activist Joins MS HealthCentral Team-- And You Can Too!