A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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We’re not always ready for multiple sclerosis (MS) relapses. In fact, most people don’t want to think about them when they’re feeling okay. But if you or someone you care about has MS, you know that relapses can happen no matter what you are planning or what is going on in your life. Living a life with MS can mean dealing with unexpected interruptions that can prevent you from doing what you enjoy or need to do.
Becoming “relapse-ready” can help. Planning ahead can help you identify an MS relapse sooner, so that you can recover more quickly. It can also help you find others in your support network who can help you when you most need them.
With so many treatment strategies available, there’s a solution for almost everyone
by Aviva Patz
You may think hitting the bathroom three times during the night, leaking a few drops here or there or feeling unable to go are things you just have to cover up and live with as best you can; if so, think again. Bladder problems affect 75 to 90 percent of people with multiple sclerosis, according to a July 2014 in-depth report in MS in Focus, published by the Multiple Sclerosis International Foundation (MSIF). “Patients need to understand that bladder issues are a symptom of their disease process and not something they should be embarrassed or ashamed about,” says Dr. Marlene Murphy Setzko, a urologist and director of Urologic Services at the Mandell Center for Comprehensive MS Care in Hartford, Connecticut.
That said, it’s understandable that these symptoms are extremely distressing. “One of the first things we learn as infants is how to control our bladder, so losing that ability can dash our self-esteem,” says psychologist Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society. “It’s hard to present yourself to the world when you’re worried you’re going to wet your pants.”
Perhaps even worse, bladder problems can be debilitating, potentially leading to depression, social isolation, poorer performance at work, skin breakdown, infections and a greater likelihood of needing to move to an extended care facility.
In spite of the discomfort and disability this issue can cause, many people hesitate to seek help. They shouldn’t.
“Seeing and reading all the ads for bladder issues made me think that it was normal,” says Claire P., of Annapolis, Maryland, who was diagnosed with MS in 2001. In fact, while it’s not “normal,” it is common.
In MSIF’s July 2014 survey of more than 3,500 people living with MS in 73 countries, more than a third of those who hadn’t been tested for urinary problems also had not brought up the topic with their neurologist. A quarter said they preferred to manage the symptoms on their own, and another quarter who had not been treated said their neurologist thought testing was unnecessary.
Clearly, bladder issues in MS are under-recognized, underdiagnosed and undertreated. “Patients are often shocked to learn that urologists with an interest in MS actually exist, and that essentially, there is a solution to every bladder problem—and that solution doesn’t have to include adult diapers!” Dr. Murphy says.
Read on to learn what bladder difficulties in MS look like and why they happen, plus the newest treatments and real-life coping mechanisms.
“Taking the steps that will help you get this essential bodily function under control is critically important,” Dr. Kalb adds. “Talking with your doctor or nurse is the first step to finding the right solutions.”
The what and why of symptoms The bladder has two main functions—to store or hold urine, and to empty effectively. But in people with MS, this often doesn’t go as planned. Why? Chalk it up to miscommunication. We know that in MS, myelin—the fatty substance that surrounds and protects nerve fibers—is damaged. When myelin is compromised, signals traveling along nerve fibers to and from the brain and spinal cord get garbled. “It’s like the game ‘telephone,’ ” Dr. Murphy says. “By the time the word gets to your bladder, it doesn’t know what the word is or what to do.”
When it comes to storage problems, the most common symptoms, collectively called “overactive bladder” (OAB), include:
Urgency and/or frequency—the sudden and intense urge to urinate. This may occur even if you just went 10 minutes ago. These symptoms can come from involuntary contractions of the bladder that your willpower is unable to override. They may be triggered by touching or hearing running water, or by passing a bathroom.
Incontinence—not being able to control where and when you go. It may involve emptying the whole bladder. You may not feel the sensation of a full bladder (until it’s too late) because nerves governing storage lose sensitivity. Compounding the problem is worsening mobility, a common symptom in MS, which can make it challenging to get to the bathroom on time.
Nocturia—related to urgency and frequency, this involves waking up at night to go.
“Symptoms of overactive bladder become increasingly common with the duration and progression of MS,” says Dr. Andrew M. Shapiro, chief of urology at the University of Maryland Rehabilitation and Orthopaedic Institute.
Two teams, including one supported by the National MS Society, have published studies that focus on finding ways to increase emotional wellness in people with MS. In the face of a chronic, often progressive illness like MS, people may tend to focus primarily on their physical health and may neglect their emotional health -- which is an essential component of overall well-being.
Group Wellness Program: Kimberly Beckwith McGuire, PhD, and colleagues (Kessler Institute for Rehabilitation, West Orange, NJ), who are funded by a National MS Society-funded Mentor-Based Postdoctoral Fellowship In Rehabilitation Research, report on their evaluation of a “psychoeducational” MS wellness program in International Journal of MS Care (2015;17:1–8).
Forty-three people with MS completed a 10-week wellness program, consisting of 90-minute group sessions geared to increase awareness of social, intellectual, emotional, and spiritual factors that can affect the overall well-being of people living with MS. Eleven people with MS who did not participate served as a control group for comparison. All participants completed a series of questionnaires before and after the program, which assessed depression, anxiety, stress, cognition, pain, social support, and fatigue.
Results: The researchers found significant reductions in depression, anxiety, overall mental health, perceived stress, and pain in the group that completed the program compared with controls. There was no improvement noted in social support, cognition, and fatigue. The findings suggest the effectiveness of this type of approach for improving many factors that contribute to quality of life for people with MS, although larger and longer-term studies are needed to confirm these findings.
Surveying Depression: Depression in its various forms is common during the course of MS. Keryn Taylor, MBChB (St Vincent’s Hospital, Melbourne, Australia) and colleagues report the result of an online survey on depression in BioMedCentral Psychiatry (2014; 14: 327).
A total of 2459 participants over 18 years of age and diagnosed with MS completed an online survey that examined demographic information; diagnostic history; level of disability; conditions occurring alongside MS; fatigue; and depression; as well as a range of lifestyle and health behaviors.
Results: About one-fifth tested positive for depression using the Patient Health Questionnaire, a screening tool used by professionals to detect depression. Of these, about 93% had clinically significant fatigue as well. In another questionnaire, nearly one-third of respondents reported that they felt depression and of those, almost 40% reported that depression limited their activities.
The researchers found that the risk of depression was higher in people with poor diets, low levels of exercise, obesity, social isolation, and in those who smoked or were taking interferon. They also found lower risks of depression in people who took omega-3 fatty acids (particularly flaxseed oil) supplements and vitamin D supplements, who ate fish frequently, who meditated, and who consumed moderate amounts of alcohol.
These types of associations do not prove cause and effect, but lay the groundwork for conducting trials and other research to address these intriguing findings. This study is an important step toward showing whether lifestyle factors can be modified to alleviate depression in people with MS.
Read more: Research is essential to finding solutions that help people with MS live their best lives. For that reason, the National MS Society has made research on wellness and lifestyle factors a priority.
Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.
Life at our house over the past month has been rather
challenging. My Mom was just diagnosed with ovarian cancer and lives
about two-hundred miles away; so we have moved her and my Dad in with us while
she goes through chemotherapy.
Lynn’s Mom has myasthenia gravis and
suffers from extreme weakness all the time. She fell while home alone and got
pretty banged up though fortunately no broken bones. His Step-Dad was diagnosed
this week with lung cancer and has maybe six months to live…and it’s the
holiday season. As the primary caregiver for Lynn, not only do I... Read more
SAN ANTONIO - A groundbreaking new treatment for multiple sclerosis is now available in the United States and is being used to treat patients in San Antonio.
The drug Lemtrada was initially denied approval by the U.S. Food and Drug Administration but the decision was reversed several months ago, after a big outcry from the MS patient community.
Lisa Capps was excited to try the new treatment. She'll spend the week hooked up to an intravenous treatment of Lemtrada for about seven hours a day for five days.
However, she believes the time spent will be worth it. Other teatments for MS haven't worked for her and said she believes the new treatment could give a fighting chance.
"This was the newest thing out there and what they call the closest to a cure that we can get to MS right now," said Capps.
Capps was first diagnosed about a year ago, shortly after he daughter was born.
"I have to walk with a cane now and I also have cognitive problems, so I have difficulty thinking, focusing, holding attention," she said.
As the disease progresses, it could lead to vision loss, complete inability to walk, urinary and bowel disfunction, the inability to sense arms and legs, dizziness, loss of balance, and other disabilities.
Treatment with Lemtrada is expected to slow progression of the disease and reduce relapses.
Capp's physician, Dr. Ann Bass, a neurologist and multiple sclerosis specialist at Neurology Center of San Antonio, said Lemtrada works by rebooting the immune system and is similar to rebooting a computer.
She said it wipes out the immune system, then allows it to rebuild over time.
"The immune system kind of rebalance itself and it can last for several years," Bass said.
At first, patients need close monitoring, especially for kidney and thyroid function. During the time the immune system is low, patients require frequent health checks.
However, according to Bass, clinical trials have had ground breaking results
enduring material has been approved for AMA PRA Category 1
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Interactive Web events will provide access to experts on topics related to living with chronic illness and disabilities; registration now open for first event scheduled March 26
Belleville, Ill.-March 5, 2015-Allsup, a nationwide Social Security Disability Insurance (SSDI) representation company, will host the Web event, "Telling Your Story," on Thursday, March 26, from 11 a.m. to 12:30 p.m. (CST). Designed to empower individuals with disabilities, "Telling Your Story" will explain how translating emotional events into words can positively impact physical and mental health, relationships and even financial well-being. Register for the event at Webinar.Allsup.com.
People with disabilities and experts from the National Alliance on Mental Illness (NAMI), WomenHeart, the National Coalition for Women with Heart Disease, and the United Spinal Association will discuss the importance of personal stories and the role they play in healing, empowering, advocating and connecting those with disabilities.
"We hear compelling stories every day," said Tai Venuti, Allsup manager of Strategic Alliances. "Our role as a Social Security disability representative is to listen, and to help individuals tell their stories accurately and completely. When SSDI applications are denied, it's often because they don't include enough-or the correct-information. The story is incomplete."
"Telling Your Story" will provide participants with the knowledge and tools to develop their own narratives to reach various audiences, including friends and family, healthcare providers, social service agencies, insurance carriers, peers, media representatives and policymakers.
World MS Day 2015 is coming up on May 27, and the first newsletter was emailed out on Sunday, March 15 to get people to help out all over the world. Last year, there were 78 countries involved and this year, they are trying to make it even bigger.
The theme is "access" and there will be stories shared worldwide to break down barriers to access for people with Multiple Sclerosis.
Since 2009, World MS Day has grown from strength to strength, reaching hundreds of thousands of people. There are 2.3 million people with MS worldwide, although it is likely that many hundreds of thousands more remain undiagnosed and many more lives are affected indirectly, through caring for someone with MS.