MS Slide Show
Interesting Slide-show from WebMD –
By Devin Garlit ·
Exacerbation, relapse, flare-up, attack: these are all names for the same thing with regard to Multiple Sclerosis. The general definition of this event is the occurrence of new or worsening of old symptoms lasting for more than 24 hours and taking place at least 30 days after a similar event. While this can be a standard occurrence for those with Multiple Sclerosis, not everyone actually understands what’s going during this period. Understanding what is happening during an exacerbation is critical for those with MS. With that in mind, I’ll do my best to help break it down as simply as I can.
What’s happening to the body during an MS exacerbation?
During one of these moments, the disease has caused your own immune system to attack your body. Specifically, your immune system begins to assault your central nervous system. Its weapon of choice? Inflammation (caused by various immune cells). This inflammation damages myelin, a fatty substance that surrounds and helps insulate our nerves. This insulating layer makes sure our nerves properly conduct the electrical signals that our brain sends to the other parts of our body (think of it as the plastic covering on an electrical wire). When this layer is damaged, those signals don’t move fast enough or at all, which is where we start to see our symptoms. Can’t lift your leg fast enough or at all? The myelin around a nerve between your brain and leg has been compromised and the signal isn’t traveling as efficiently as it should be. Not only does our immune system damage the myelin, but it also damages the cells needed to regrow it.
When the immune system attacks
These moments that we call exacerbations (or whichever term you like) are when the immune system is making its attack. It’s when the immune system has created a lot of inflammation in your central nervous system, and it’s damaging that myelin layer. Not only does this inflammation damage that protective coating, but it also has an effect on those signals that are traveling through that part of the central nervous system. We use steroids to fight exacerbations as they help to reduce this inflammation.
When a relapse is over: the aftermath
When an exacerbation is over, these damaged areas of myelin develop some scar tissue (that’s where we get the term sclerosis in multiple sclerosis, we are left with multiple scars; these scars are also referred to as plaques or lesions). Once all that inflammation is gone or significantly reduced, some of that myelin can regrow, but it never grows back completely or strong enough due to the scarring and because the cells needed to facilitate regrowth have been damaged. This regrowth, coupled with the reduction in inflammation, is why people can seem to bounce back after an exacerbation. They may even seem like they are completely well again. That’s why people often use the term “relapse,” because they seem to improve or go back to the way they were. This is a pattern that is extremely common in people diagnosed with the Relapsing-Remitting form of the disease. However, the more exacerbations you have, the more your ability to bounce back becomes hindered.
Accumulating damage over time
The more scars you have and the more cells that help regrow myelin are damaged, the less you are able to recover. In the past, maybe a damaged nerve could still get the brain’s signal where it needed to go, even if not the most efficiently (unless an outside influence temporarily triggered an issue). As more damage occurs over time though, the ability of that nerve to do its job, no matter the situation, becomes compromised. Basically, that’s how people with MS can worsen over time. That’s why doctors try to not only shorten the length of exacerbations through steroids but to minimize the overall number of them with disease-modifying drugs.
While researchers are working to identify new and better strategies to stop MS, restore function and end MS forever, people whose MS has become more disabling—and their family members and friends—need information right now about how to manage the challenges they face. With these goals in mind, the National MS Society convened a group of key stakeholders – including people with MS, support partners, Society staff and clinicians from the fields of neurology, primary care, rehabilitation medicine, psychology, nursing, physical therapy and speech pathology– to help inform the Society’s role in finding solutions for individuals and families who are facing advanced care needs.
“At the Society, when we face a challenge, we get the brightest minds together and put the problems on the table,” said Cyndi Zagieboylo, President & CEO of the National MS Society. “We need to pursue every opportunity to support people with advanced MS in living their best lives.”
What It’s Like
People living with MS lent a vital voice to the process. “It’s going to be very important as you think about this that you understand our lived experience,” urged Lisa Iezzoni, MD, a health services researcher who has MS. “It takes me about 10 times longer to do the most basic task.”
Karen Jackson, who lives with primary progressive MS, agreed. “Having advanced MS means I have lost the ability to be spontaneous,” she said. “I am forced to plan every minute of every day. The only thing more exhausting than planning my day, is not planning. It takes an annoying sequence of action steps to achieve even the smallest goal, like buying gas or parking the car.”
Resilience, however, rang through despite the challenges of advanced care needs, which for both of these women includes wheeled mobility. “When people ask me how I feel about my MS, I tell them that I’m not sick,” insisted Dr. Iezzoni. “I just can’t walk.” Ms. Jackson added, “Explain to people what your needs are. They want to help.” It’s worth the effort, she says. “Not participating in life is not an option.”
If I Have to Use a Wheelchair…
Getting a wheelchair was noted to be a “line in the sand” for many people living with MS, who often view the choice to use one as a loss of independence. Meanwhile, by trying to stay on their feet, people might be curtailing activities because of increased fatigue, or concerns about stumbling or falling.
“One of our challenges is that the wheelchair is used to symbolize disability,” said physical therapist Jean Minkel (Independence Care System. New York). “The wheelchair should not be considered a failure of therapy.”
Dr. Iezzoni heartily agrees. “When I finally started using a wheelchair 14 years after my first MS symptom, it was like spring after a housebound winter,” she said. “Silliness – that I was afraid people wouldn’t think I was strong because I was using a wheelchair.” Ms. Jackson agreed. “I’m learning to navigate a new normal,” she said. “My goal when I meet you is to have my chair disappear in 10 minutes, so that you only see me!”
Evaluating the home environment is key to determining the type of mobility device needed. “A picture is worth a thousand words and a home visit is a narrative,” said Ms. Minkel. “To understand the need, we need to see the environment. For example, show me what the front door looks like.”
The wheeled device is not the only crucial factor – so is choosing the proper cushion to sit on. Some cushions can relieve pressure, thus preventing pressure sores (sites of damaged skin that can cause serious infections). “Thirty percent of our clients are at risk for pressure sores,” said Minkel. “Only two percent get them because they have pressure-relieving wheelchair cushions.”
The National MS Society provides guidance for people with MS and healthcare providers to navigate the process of choosing and obtaining coverage for a wheeled device.
Participants considered other key issues related to the advanced care needs of people with MS, naming some difficult problems and suggesting solutions.
Achieving Optimal Care
The group discussed how to achieve optimal care for people with advanced MS. Nicholas LaRocca, PhD, Vice President of Healthcare Delivery and Policy at the Society, noted that health care concerns are changing as the MS population gets older. “The average age of people with MS has increased by over 30 years since 1984,” he said. “Coexisting conditions, such as hypertension, increase with age and appear to be increasing in MS. Furthermore, people with MS who have some of these conditions at diagnosis reach the most severe level of mobility impairment faster than those who don’t.”
The group agreed that education is needed on both ends of this spectrum. Primary care providers need to be educated about MS so that they can distinguish MS symptoms from conditions that require primary care. And people with MS need to be educated about the importance of watching out for their own health. “A person with a disability still needs their cholesterol checked,” said Ms. Minkel. ”They still need their blood pressure checked.” Neurologists and primary care providers need to communicate, collaborate and coordinate their care of a person with MS.
Early and ongoing evaluation of symptoms also is key. “We need to educate people with MS and their caregivers about advocating for chronic care issues,” said Ruth Whitham, MD (Oregon Health& Science University). “Perhaps we can develop an advanced MS care checklist that would include symptoms to think about and what to do if you notice them.” The goal is to help people with MS to advocate for early and ongoing assessment, and for healthcare providers to ask routinely about changes that may be occurring throughout all bodily systems.
Importantly, people with MS need to know they have the right to advocate for care, regardless of how advanced their MS. “We don’t ever want a person to hear, ‘There’s nothing more we can do for you,’” added Dr. Kalb.
Caring for Caregivers
Speakers paid careful attention to how advanced care needs can affect caregivers.
“Families can become isolated,” said psychologist David Rintel, EdD, whose father lived with MS. “You feel pretty different from everyone else, and that isolation is harmful to your physical and mental health.” He advised that healthcare providers should see the caregiver occasionally along with the patient, if the patient grants permission, to get their perspective, and also see how the caregiver themselves are doing. “We need to learn the signs of burnout, such as depression, and increased use of alcohol,” he said. “Caregiver burden is real.”
There also is much that a caregiver needs to learn – navigating the healthcare system, how to transfer people safely, and management of bladder and bowel problems. “Dealing with bowel/bladder issues is actually a leading cause of caregiver burnout,” added nurse Cindy Walsh (The Boston Home).
“Families have to learn how to ask for help,” said Dr. Rintel. “They have to ask in a way where they say what, where, when and how long. Most people would help if they understood specifically what you need.”
The group identified the highest priority research questions that need to be answered concerning the care and support of people with advanced care needs and their families, pinpointing questions in the areas of assistive technology; comorbidities and primary care; health care system issues (e.g., insurance coverage); long-term care; symptoms and complications; skin care; speech, swallowing, and pulmonary functions; and the benefits of wellness/lifestyle interventions. They are now formulating a prioritized list of these questions to help inform the Society’s next steps.
A white paper describing the meeting’s discussion highlights and recommendations regarding the Society’s response to the needs of those affected by advanced MS will be posted on the Society’s web site, and a similar paper will be submitted for publication in a peer-reviewed journal.
Help is Available Now
Individuals nationwide may contact the Society’s MS Navigator® program via the Society’s toll-free help line 1-800-344-4867 (1-800-FIGHT MS) or via email (contactusNMSS@nmss.org). The MS Navigator Program connects people to resources,, helps people access optimal healthcare and understand benefits such as health insurance, face financial challenges and planning for the future, and find support when MS progresses.
Right now, MS activists are engaged on a number of fronts to improve quality of life and access to care. Among these is advancing home modification tax credit legislation, to provide financial relief for home modifications to promote safety and mobility.
The National MS Society provides support to people living with advanced MS, including care guides for families, information about symptom management, a guide to financial planning, and information on advanced directives. Read more
The Society also provides support for healthcare professionals who are seeking to help people with MS obtain care at home, in nursing homes, assisted living facilities, or adult day homes. Read more
Researchers at the University of British Columbia have uncovered a rare gene mutation that appears to dramatically increase the risk, in some individuals, of developing a severe form of progressive multiple sclerosis. While the cause of MS is not known, scientists believe several different factors, including susceptibility genes, may interact to trigger the disease. The gene was discovered in two unrelated families that had multiple members with MS. The researchers also determined that the gene (NR1H3) contains instructions for a protein called LXRA, which is thought to be a control switch for genes involved in many functions, including some that help control inflammation and integrity of nerve-insulating myelin in the brain and spinal cord. This type of discovery can provide crucial clues to biological pathways that underlie MS, and may lead to new approaches for stopping MS and restoring function. The study, by Drs. Carles Vilariño-Güell, Weihong Song, A. Dessa Sadovnick and others, was funded in part by the MS Society of Canada and appeared in the journal Neuron on June 1, 2016.
From the Russian Multiple Sclerosis Society (http://www.armss.ru/)
Multiple Sclerosis (MS) is a severe chronic disease of the brain and spinal cord, which affects relatively young people and oftentimes results in disabilities. Over recent years, MS has tended to rapidly grow in frequency with onset among younger patients. This was caused by not only better diagnostic facilities for MS but also improvement of the quality of epidemiological research, yet the actual growth of the disease is also a reason. Currently, there are over 150,000 patients in Russia, of whom no less than 75% are already disabled. While including the families of patients and disabled people, MS as a problem involves from 750,000 to 1 million Russian citizens. At present, there are about 3 million people with MS in the world. The MS frequency in Russia is from 30 to 100 per 100,000 of general population.
70% families break up after one of the spouses is diagnosed
29% patients have not left their homes for over a year
78% patients are females under 50
75% patients have disabilities
35% are young people under 28
6% are children aged 10-15
Medical and social support for PwMS is a challenging and complex task, which cannot be resolved otherwise but in close cooperation between civil institutions, as well as expert and public ones. Since the course of the disease is unpredictable with the end deemed practically inevitable, while diagnostic facilities were untimely and pathogenic therapies were highly expensive and disabilities growing, some time ago patients with MS would not often get an adequate medical and social treatment as they were regarded as having no prospects. With introducing a range of medicines in the 90s of the 20th century to modify the course of multiple sclerosis (or, disease modifying drugs – DMDs), then, new medical and rehabilitation techniques, patients got a hope for the pathological process development to slow down, to prolong physical activity and working ability and quality of life.
However, MS requires overall significant resources employed being financial, organizational, scientific-methodic, social. In the 90s of the last century, the problem remained little-known and was considered by professionals as a specific scientific-medical one. For a long time, authorities and professional and general communities underestimated its high social significance and the necessity to concentrate on considerable efforts to fight it.
Nurse assistance services have been set up in 55 regions that carry out target medical maintenance of patients receiving highly expensive medicinal therapy. Nurses render consulting medical and social assistance to people with MS.
The crowning achievement of the ARMSS is that it has managed to translate, in the general public mind, MS as a problem from the ‘scientific and medical’ category into the ‘social and economic’ one, as well as to improve the quality of rendering medical assistance to Russians suffering from MS. The most outstanding result of this understanding became the guaranteed provision of highly expensive medicines (DMDs) for patients with MS at the expense of federal and regional budgets, which had been unthinkable of in the early 2000s.
The improvement of quality of life of people with MS is a result of combined activities of structures of civil society and authorities.
(after: Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities. by Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD)
Two recent studies have uncovered new lifestyle factors that may influence whether a person develops multiple sclerosis or not:
Harvard researchers — including National MS Society-funded Dr. Cassandra Munger — reported that children whose mothers were deficient in vitamin D during pregnancy may have nearly twice the risk of developing MS. Additional research is needed to confirm and understand this finding.
On the flip side, researchers at the Karolinska Institute in Sweden and Johns Hopkins University reported that people who drank about four cups of coffee daily had a lower risk of developing MS compared to those who did not drink coffee. Further research is needed to understand this link.
MORE: Research on risk factors is complicated, and cause and effect are difficult to establish. It’s important to note that not every mother with low levels of vitamin D will have a child who develops MS, and not everyone who drinks large amounts of coffee will avoid developing MS.
Hearing loss is an uncommon symptom of MS. About 6 percent of people who have MS complain of impaired hearing; hearing loss may take place during an acute exacerbation.
In very rare cases, hearing loss has been reported as the first symptom of the disease.
Deafness due to MS is exceedingly rare, and most acute episodes of hearing deficit caused by MS tend to improve.
Hearing loss is usually associated with other symptoms that suggest damage to the brainstem — the part of the nervous system that contains the nerves that help to control vision, hearing, balance and equilibrium.
Hearing deficits caused by MS are thought to be due to inflammation and/or scarring around the eighth cranial nerve (the auditory nerve) as it enters the brainstem, although plaques (abnormal areas that develop on nerves whose myelin has been destroyed) at other sites along the auditory pathways could also contribute to hearing problems.
Because hearing deficits are so uncommon in MS, people with MS who do develop hearing loss should have their hearing thoroughly evaluated to rule out other causes.
Finding an audiologist or speech-language therapist:
The American Academy of Audiology provides an online search tool to locate audiologists who are members of the Academy. The American Speech-Language-Hearing Association (ASHA) provides an online search tool to locate certified speech-language pathologists (SLPs) and audiologists.
American Academy of Audiology
11480 Commerce Park Drive, Suite 220 Reston, VA 20191
Phone: 800-222-2336, website or email
American Speech-Language-Hearing Association (ASHA)
2200 Research Boulevard
Rockville, MD 20850-3289
Phone: 800-638-8255, website
A new study finds that the more lesions spotted on an MRI, the worse the taste function of the patient with multiple sclerosis. They also found that women did better men on taste measures.
The researchers, led by Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center, administered a standard taste test (sweet, sour, bitter, and salty) to 73 MS patients and 73 controls subjects, along with MRI of 52 brain regions known to be affected by MS in both groups. They found that the disease significantly influenced the ability to identify tastes, especially salty and sweet. Fifteen to 32 percent of MS patients – which is nearly twice as high as previous studies found – had taste scores below the 5th percentile of controls. What’s more, taste scores were inversely correlated with lesion amounts and volumes in the large sectors of the frontal and temporal lobes, the higher regions of the brain, identified on the MRI.
Regardless of subject group, women outperformed men on taste measures, which mirrors what previous taste studies have found. It is likely because women have more taste papillae and taste buds than men, the researchers said.
“It appears that a sizable number of these patients exhibit taste deficits, more so than originally thought. This suggests that altered taste function, though less noticeable than changes in vision, is a relatively common feature in MS. Future studies investigating the relationship between taste and MS may help better diagnose and understand the disease, as well as better manage symptoms,” Doty said.
The findings were reported in the Journal of Neurology.
Background: Diagnosing MS can be challenging, and it often happens in stages. The term “clinically isolated syndrome” (CIS) is used to describe a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation and demyelination in one or more sites in the brain and spinal cord. Individuals who experience a CIS may or may not go on to develop definite MS. However, clinical trials of specific disease-modifying therapies have led to approvals for their use to treat CIS.
Some people have specific, “clinically silent” lesions (areas of inflamed or damaged tissue) on MRI, meaning that they are experiencing no symptoms and only have imaging findings. There has been growing research on this phenomenon, called “radiologically isolated syndrome (RIS),” which like CIS may or may not go on to develop into definite MS. There is debate as to whether people with RIS would benefit from early treatment with disease-modifying therapies.
Primary-progressive multiple sclerosis is a relatively rare form of MS, with about 10% of all people with MS receiving this diagnosis. It is characterized by steady worsening of neurologic functioning, without any distinct relapses (also called attacks or exacerbations) or periods of remission.
The Study: This team examined data from 453 people with RIS collected from 22 investigators in five countries; a database of 210 people with MS in Olmsted County, Minnesota; and a cohort of 754 people with progressive MS.
Of the 453 people with RIS, 128 (28%) went on to develop a first neurological event consistent with CIS or relapsing MS. Of these, 15 (11.7%) developed primary-progressive MS. Those who developed primary-progressive MS were more commonly men, and older at diagnosis by approximately 10 years, than the 113 people who developed CIS/MS. The frequency of primary-progressive MS and age comparisons were similar to those identified in other groups of MS. Of the 15 who went on to develop primary-progressive MS, 12 had MRI scans of the spinal cord, and all 12 had lesions in the spinal cord, compared with 64% of those who developed CIS/MS.
The team (Dr. Orhun Kantarci, Mayo Clinic and Foundation, and national and international collaborators) published their findings in Annals of Neurology (published online, December 29, 2015).
Conclusions: This study provides a rare glimpse of a very early stage of disease even before progression begins, and provides additional evidence of the value of research into radiologically isolated syndrome. Finding a way to identify and track primary-progressive MS earlier may help to improve access to care for those who have it.
Read more about primary-progressive MS
– See more at: http://mjnickum-mynewbook.blogspot.com/#sthash.AQU8pdwj.dpuf
• High-dose vitamin D supplementation increased vitamin D levels in the blood, was safe and tolerable, and reduced the proportion of immune cells that are thought to drive disease, in a small study of 40 people with relapsing-remitting MS.
• The trial was too small to detect differences in disease activity, but a larger Society sponsored trial of vitamin D supplementation is currently recruiting participants.
• The team (Elias S. Sotirchos, MD, Pavan Bhargava, MD, Peter A. Calabresi, MD, and colleagues, Johns Hopkins University School of Medicine, Baltimore) has published results in Neurology. Dr. Bhargava was funded by a Sylvia Lawry Physician Fellowship from the National MS Society.
Background: Multiple sclerosis involves immune attacks on the brain and spinal cord. A number of genetic and environmental factors influence whether a person will develop MS. These factors may also impact the severity of the disease. There is growing scientific evidence that low levels of vitamin D in the blood are a risk factor for developing MS. In lab mice, vitamin D can reduce the effects of EAE, an MS-like disease, and some evidence suggests it may impact ongoing disease activity in people who have MS.
An important initial step to pursuing this lead was to determine whether taking large doses of vitamin D was safe and provides any hints of impact against the immune activity that is associated with MS. A team at Johns Hopkins University undertook this preliminary step to determine whether a larger-scale clinical trial was warranted.
The Study: Investigators randomly assigned 40 people with MS to receive either 800 IU of vitamin D, or 10,400 IU, daily for six months (nutritional supplementation is typically 600 IU). Participants were maintained on standard disease modifying treatment throughout the course of the study. Blood tests were done at three and six months to determine whether the dose increased the levels of vitamin D in the blood, and immune system effects. Blood and urine were assessed for calcium levels, since an excess of calcium can be a side effect of high-dose vitamin D supplementation. The primary goals of this study were to determine safety and effects on immune activity markers.
The investigators reported a few adverse events that did not differ between the groups, and they were all minor.
Vitamin D levels increased more in the high-dose group, to a level that has been suggested as the optimal target for people with MS. Immune cells known as Th17 cells – which have been suggested to be major players in the immune attack on the brain and spinal cord in MS – were reduced in the high-dose group, but not in the low-dose group. Investigators also found that the higher the levels of vitamin D in the blood, the greater the reduction of Th17 cells.
Results were published in Neurology (published early online, December 30, 2015).
Next Steps: This team is now conducting a larger trial at several centers nationwide, in which they are recruiting 172 people with relapsing-remitting MS to compare the effectiveness of 600 IU of vitamin D supplementation versus 5000 IU vitamin D supplementation at reducing MS disease activity, when added to standard therapy with glatiramer acetate (Copaxone®, Teva Pharmaceutical Industries). The study is funded by a research grant from the National MS Society, with support from the Society’s Greater Delaware Valley Chapter.
Further research in the laboratory also is suggesting that vitamin D’s capabilities go beyond immune regulation. Read more
Read more about the larger, ongoing study
Read more about research on vitamin D and MS