Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com

Wednesday, August 5, 2020

Inside An MS Exacerbation


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 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.

Tuesday, July 14, 2020

Survey on Complementary/Alternative Medicine Points to Increasing Use by People with MS


The use of complementary and alternative therapies – including vitamin/mineral supplements, mind-body therapies, diet, and exercise – is widespread in MS (81%), according to researchers from Oregon Health & Science University who report on a survey of 1,014 people with MS. It is also on the rise; the team compared these survey results to those of a similar survey conducted in 2001, and found that use of all therapies increased significantly. Respondents to the current survey were nine times more likely to speak with their neurologist about use of these therapies than in 2001.

Many complementary/alternative therapies are considered to be outside the realm of conventional medicine, although others, including vitamin D, exercise, acupuncture, and cooling strategies, for example, have established their role in comprehensive care through scientific study and clinical trials. The survey results highlight the need for  more research to determine the safety and effectiveness of specific complementary and alternative therapies, conclude the study authors. This study was partly funded by the National MS Society. Lead author Elizabeth Silbermann, MD, is funded by the Society’s Sylvia Lawry Fellowship, which trains individuals to conduct clinical research in MS.

Read more on the OHSU website

Read a scientific summary of the paper in MS and Related Disorders

Read more about complementary therapies and MS, including questions to ask when considering a complementary/alternative therapy

Saturday, June 13, 2020

What Type of MS Do You Have? Experts Clarify How to Describe MS to Improve Care and Clinical Trials


An international committee of MS experts has published a statement that clarifies how to describe the different courses of multiple sclerosis and disease activity. The statement was prompted by inconsistencies in the way MS descriptors are used by the MS community. These clarifications can improve care and access to treatments, and refine the selection of clinical trial participants so that trial outcomes can be better applied to clinical care.

The statement was an effort by the International Advisory Committee on Clinical Trials in Multiple Sclerosis, which is jointly supported by the US National MS Society and the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The Committee provides perspective and guidance in areas of interest to planning and implementing clinical trials for new agents for the treatment of MS.

“With this published statement, we’re encouraging the healthcare and regulatory community to use the terms as described for the different subtypes of MS and for describing disease activity,” noted Fred Lublin, MD (Icahn School of Medicine at Mount Sinai), who is senior author of the statement and two previous papers defining MS subtypes that were published in 1996 and 2013 under the auspices of the committee. “It’s critical not just for improving patient care, but also for selecting participants for clinical trials, so you are comparing apples to apples.”

Inconsistent use of the terms: The 2013 paper defined four categories of MS based on current clinical course: clinically isolated syndrome (an initial episode of neurological symptoms), relapsing-remitting MS, secondary progressive MS, and primary progressive MS. The paper also recommended adding terms to describe an individual’s current disease state, such as “active” (shown by relapse or changes on MRI) and “progression” (shown by worsening of disability independent of relapse activity). While the time period for the activity was not specified, it was recommended that an assessment be performed at least annually.

Since the 2013 paper was published, there has been confusion in the use of the terms describing a person’s current disease state and the terms have been used without reference to a timeframe. For example, in the prescription indications for recent MS therapy approvals, neither the European Medicines Agency nor the U.S. Food and Drug Administration specified a timeframe for determining disease activity. Moreover, the agencies defined activity differently; the European Medicines Agency defined “activity” as either clinical relapse or MRI-detected inflammation, whereas the U.S. Food and Drug Administration defined “activity” only in terms of relapses.

Clarifying definitions: The recently published statement reiterates the definition of “activity” as clinical relapses or imaging features of inflammatory activity, evaluated annually or over another specified interval. The definition of “progression” is reiterated as clinical evidence of disability worsening, independent of relapses, in individuals in a progressive phase, evaluated annually or over another specified interval. Also, the more general term “worsening” refers to any increase in impairment or disability as the result of residual deficits caused by relapses, or increasing disability during progressive phases of MS.

Future work: “As part of its ongoing activities, the committee plans to continue to reevaluate and refine course descriptors, especially when new evidence-based methods enable pathological distinctions between MS phenotypes, said Professor Alan Thompson, Chair of the International Advisory Committee on Clinical Trials in MS and Dean of University College London’s Faculty of Brain Sciences. “This would vastly improve prognosis, treatment choices, and the development of more selective therapies.”

Read the recently published open access statement, “The 2013 clinical course descriptors for multiple sclerosis: A clarification” by Fred D. Lublin, Timothy Coetzee, Jeffrey A. Cohen, Ruth Ann Marrie, Alan J. Thompson. Published online in Neurology on May 29, 2020.

Read more about types of MS

Saturday, May 2, 2020

More on COVID-19 and MS


Coronavirus Risk for People Living with Multiple Sclerosis (MS)
MS itself does not increase the risk of getting COVID-19. However, certain factors associated with your MS may increase your risk for complications:
  • Chronic medical conditions, such as lung disease, heart disease, diabetes, cancer, smoking and asthma
  • Significantly restricted mobility, such as needing to spend most of your day seated or in bed
  • Age 65 or older
  • Possibly taking certain disease modifying therapies that deplete immune system cells
  • Severe obesity or BMI higher than 40
  • Living in a long-term care facility
Sometimes, the body’s response to infections, including COVID-19, may cause a temporary worsening of MS symptoms. Typically, these symptoms settle down once the infection clears up. If you are experiencing new MS symptoms or have any concerns about any of your MS symptoms, please contact your MS healthcare provider.
 
Protecting Yourself from Coronavirus
The Centers for Disease Control and Prevention (CDC) provides recommendations on how to prevent the spread of COVID-19 and what to do if you show symptoms.   
Working and Coronavirus (COVID-19)
MS Healthcare Providers
Healthcare providers who treat people living with MS can find additional information in our Professional Resource Center.
Healthcare Workers Who Have MS
  • There is no increased risk of you getting COVID-19 because you have MS.
  • If you are concerned about your risk of getting COVID-19 because of the DMT you take, please contact your MS provider for advice.
  • There are no special PPE instructions for people with MS. You should follow the same precautions as other healthcare workers. If you are concerned about your risk due to your DMT, please contact your MS provider for advice.
Employee Rights
There are many protections that could be available to you if your employer is not being flexible with work from home options or workplace accommodations. Visit our employment resources page to learn more or contact an MS Navigator to discuss your individual rights and options.
Children with MS
There is no specific advice for children with MS; they should follow the advice above for all people with MS. The CDC has specific recommendations for children and COVID-19.
Pregnancy
At this time there is no specific advice for women with MS who are pregnant. There is general information on COVID-19 and pregnancy on the CDC website.
Additional Resources

Saturday, March 14, 2020

The Coronavirus and MS: What You Need to Know

Reviewed by MSAA Chief Medical Officer Barry A. Hendin, MD

Symptoms and Special Considerations for Individuals with MS

The “coronavirus disease 2019” (COVID-19) is a potentially serious respiratory disease that was first reported in December 2019 in China. As of early March 2020, the illness had made its way to almost 70 locations, including the United States, and has affected more than 90,000 individuals worldwide. Please be aware that these figures are expected to increase on a weekly or even a daily basis.
If exposed to this new coronavirus, symptoms may appear within two days to two weeks. Initial symptoms include:
  • Fever
  • Cough
  • Shortness of breath
According to the Centers for Disease Control and Prevention (CDC), individuals showing signs of the disease should isolate themselves from other people and animals, and immediately contact their physician. Unless a medical emergency, those affected should not go directly to a medical facility. This is in an effort to avoid spreading the illness to others and to enable the physician to be prepared when a patient with this illness arrives at the office.
The majority of individuals who catch the coronavirus will not experience a serious form of the illness and will not need to be hospitalized. Seniors (ages 60 years and older) as well as individuals with certain health conditions such as heart disease, lung disease/respiratory illness, and diabetes, seem to be at greater risk of serious illness.
Those at greater risk also include people whose immune systems are suppressed, such as individuals who take disease-modifying therapies (DMTs) to treat MS, as well as those with other illnesses that compromise the immune system and/or require similar medications. People with MS should not stop taking their DMT, or make any changes to their treatment regimen, without consulting their physician.
Another consideration for individuals with MS is the fact that an illness, infection, or particularly a fever, can cause a temporary flare-up of symptoms, known as a pseudoexacerbation. If ill with a flu or virus, people with MS and their care partners should be aware of this potential complication. A pseudoexacerbation is a temporary worsening of symptoms without actual myelin inflammation or damage, brought on by other influences. Once the illness, infection, or fever is resolved, the flare-up will usually remit within 24 hours.

For anyone whose illness is more severe, especially if affecting the ability to breathe or if the fever is high, he or she (or the care partner) should immediately contact a medical professional or call 911 and explain the situation. Immediate emergency assistance may be needed.


How is the Coronavirus Spread?

According to the CDC, the virus is thought to spread mainly from person-to-person. This may occur between people who are in close contact with one another (within about six feet) and respiratory droplets produced when an infected person coughs or sneezes can land in the mouths or noses of people who are nearby. These droplets may also possibly be inhaled into the lungs.
People are thought to be the most contagious when they are their sickest, when experiencing the most symptoms. Additionally, the CDC notes that some spread might be possible before people show symptoms, but this is not thought to be the main way the virus spreads.
The virus may also spread from contact with infected surfaces or objects when someone with the illness has left germs on those surfaces by touching, sneezing, or coughing. When a healthy person touches an infected surface, and then touches his or her own mouth, nose, or eyes, it is possible that the virus may be spread this way. However, it is not thought to be the main way the virus spreads.
Some reports have questioned if the coronavirus may be caught through packages sent through the mail or products imported from areas with high numbers of cases. Several sources, including the CDC, state that germs could not live long enough on a mailed package to be a threat and that the risk is very low.

What to Do if Mildly Sick with the Coronavirus

As noted earlier, the majority of individuals who catch the coronavirus will not experience a serious form of the illness and will not need to be hospitalized. To follow are guidelines issued by the CDC for those who are mildly ill and are able to be isolated at home during their illness. However, a healthcare professional should immediately be contacted to determine (1) an individual’s illness severity and (2) to assess whether the residential setting is appropriate for home care.
Considerations include:
  • The patient (with coronavirus) is stable enough to receive care at home
  • Appropriate caregivers are available at home
  • The patient can recover in a separate bedroom, without sharing immediate space with others
  • Resources for access to food and other necessities are available
  • The patient and other household members have access to personal protective equipment (at a minimum, gloves and facemask) and are capable of adhering to recommended precautions, such as respiratory hygiene, cough etiquette, and hand hygiene
  • No household members are present who are at an increased risk of complications from a coronavirus infection; these include individuals who are 65 or older, young children, pregnant women, people who are immunocompromised, or those who have chronic heart, lung, or kidney conditions
The CDC lists the following recommendations if mildly sick with the coronavirus and able to be isolated and recover at home:
  • Stay home except to get medical care
  • People who are mildly ill and able to isolate at home during their illness should restrict activities outside of the home, except for getting medical care; do not go to work, school, or public areas; avoid using public transportation, ride-sharing, or taxis
  • At home, separate from other people and animals
  • Stay in a specific room at home and away from other people; use a separate bathroom if available
  • Restrict contact with pets and other animals while sick with COVID-19 until more information is known about the virus; avoid petting, snuggling, being kissed or licked, and sharing food
  • When possible, have another household member care for the animals; if no one is available, wash hands before and after interacting with pets and wear a facemask
  • Call ahead before visiting one’s doctor
  • If a medical appointment is planned, call the healthcare provider and explain the situation; this will help the healthcare provider’s office take steps to keep other people from getting infected or exposed
  • Wear a facemask when around other people, pets, and before entering a healthcare provider’s office; if unable to wear a facemask, others should not stay in the same room or they should wear a facemask if entering the room

Staying Healthy and Minimizing the Spread of COVID-19

The federal government and the CDC are proactively working to minimize the introduction and spread of this virus within the United States. More time is needed for researchers to gain a greater understanding of the specific virus (SARS-CoV-2) that causes this specific coronavirus (COVID-19), before a vaccine and treatments may be developed. Until these become available, the CDC explains that “Nonpharmaceutical Interventions” (NPIs) are actions that people and communities can take to help slow the spread of illnesses.
Also known as “community mitigation strategies,” and independent of medications and vaccines, examples of these types of actions include disinfecting surfaces, washing hands, staying home when sick, increasing the distance between people at public gatherings, canceling or postponing special events, and closing schools and/or businesses as needed. Avoiding travel to affected countries, as well as keeping a distance from anyone showing symptoms of the coronavirus, is also vital to minimizing the spread of the coronavirus.
Staying healthy and reducing one’s risk is another important factor. The CDC and MSAA recommend the following “healthy habits” for preventing the flu (and other illnesses):
  • Get a flu vaccine and help stop the spread of germs (if recommended by one’s doctor)
  • Continue taking a disease-modifying therapy (DMT) and do not make any changes to one’s treatment regimen, unless advised by one’s physician; consult a medical professional with any concerns
  • Take flu antivirals, if prescribed
  • Avoid close contact with people who are sick
  • Stay home when sick, but be sure to consult a medical professional
  • Individuals should cover their mouth and nose with a tissue when coughing or sneezing, or use the inside of their arm to avoid spreading germs
  • Washing hands often helps to protect people from germs; if soap and water are not available, an alcohol-based hand rub should be used
  • Avoid touching the eyes, nose, or mouth – an illness may be spread when a person touches something that is contaminated with germs and then touches his or her eyes, nose, or mouth
  • Practice other good health habits, such as cleaning and disinfecting frequently touched surfaces at home, work, or school – especially when someone is ill; get plenty of sleep, be physically active, manage stress, drink plenty of fluids, and eat nutritious food
  • Anyone in close contact to someone with COVID-19 and who develops symptoms of COVID-19 should immediately call his or her healthcare provider to discuss symptoms and exposure

Coronavirus Background and Overview

As noted earlier, the “coronavirus disease 2019” (COVID-19) is a potentially serious respiratory disease that was first reported in December 2019 in China. As of early March, 2020, the illness has made its way to almost 70 locations, including the United States, and has affected more than 90,000 individuals worldwide. Please be aware that these figures are expected to increase on a weekly or even a daily basis.
According to the Centers for Disease Control and Prevention (CDC), this new virus that causes the COVID-19 disease has been named “SARS-CoV-2,” and is part of a large family of coronaviruses that are common in people and many different species of animals, including camels, cattle, cats, and bats. The CDC explains that although rare, animal coronaviruses can occasionally infect people and then spread between people. Since the outbreak began in an area of China that has large seafood and live-animal markets, an initial animal-to-person spread is suggested. From there, the increasing number of people being diagnosed in areas without exposure to animal markets indicates a change to a person-to-person spread.
The coronavirus ranges from mild to severe. A report from China estimates that 16% of those diagnosed will experience a serious illness, so the majority of those affected will experience a milder form of the disease. The CDC notes that older people and individuals with certain health conditions such as heart disease, lung disease, and diabetes, seem to be at greater risk of serious illness.
According to the CDC, no scientific reports have been published about the susceptibility of pregnant women to the current coronavirus. Pregnant women do experience immunologic and physiologic changes that may make them more susceptible to viral respiratory infections, including COVID-19. No evidence indicates that children are more susceptible to this virus, and most confirmed cases of COVID-19 reported from China have occurred in adults.
Those at greater risk also include people whose immune systems are suppressed, such as individuals who take disease-modifying therapies (DMTs) to treat MS, as well as those with other illnesses that compromise the immune system and/or require similar medications. People with MS should not stop taking their DMT, or make any changes to their treatment regimen, without consulting their physician.
Despite the current warnings, the CDC states, “At this time, however, most people in the United States will have little immediate risk of exposure to this virus. This virus is NOT currently spreading widely in the United States. However, it is important to note that current global circumstances suggest it is likely that this virus will cause a pandemic. This is a rapidly evolving situation and the risk assessment will be updated as needed.”
An illness is considered a “pandemic” when it meets the following criteria: causing an illness that has resulted in death; sustained person-to-person spread, and worldwide spread of the new virus.

Closing Notes

MSAA’s Chief Medical Officer Barry A. Hendin, MD, explains that members of the MS community need to be aware of the risks and take extra steps to minimize their chances of catching the coronavirus. “Although only a small number of individuals in the United States have tested positive for the coronavirus, this number may increase exponentially in the coming weeks. People 60 and older, as well as those with certain health conditions or weakened immune systems, need to be particularly careful.
“Many individuals with MS take a disease-modifying therapy to control disease activity, and as is often the case with these types of disease-fighting medications, the immune system becomes suppressed and may be challenged to combat germs and infections. Even those who are not on a long-term treatment for MS may be more susceptible to infections and less able to fight-off illness. For these reasons, members of the MS community – including patients, care partners, and family members – need to be extra careful during this flu season to avoid catching the coronavirus and giving it to others.
“Strategies such as avoiding crowded public places, washing hands often, and keeping a distance from anyone who may appear to be sick are all vital to reducing your risk of catching the coronavirus. Remembering not to touch your eyes, nose, or mouth when in public and touching the same door handles, chair arms, and other things that multiple people have touched is also important. While we don’t want people to feel they are being held captive in their own homes – and we of course encourage individuals to go outside and be active – it may be wise at this time for people to temporarily avoid the more crowded types of activities and events.
“Unfortunately, this may mean reducing your time doing the things you may truly enjoy, such as shopping, going to the gym, and even attending educational programs. Waiting for things to settle down and become less of a risk may be in your best interest. Of course, if you feel that you have been exposed to someone sick or that you may have symptoms of the coronavirus, please be sure to contact your healthcare professional immediately. I want to wish everyone a very safe and healthy spring season.”

Online Resources

Please visit the coronavirus section of the Centers for Disease Control and Prevention (CDC) website, which provides full coverage of all the details involved with the virus, its risks, and the latest findings.
Please refer to the coronavirus section of the WebMD website for an overview of the coronavirus outbreak along with timely updates on the spread of the illness.

For More Information

For general information or to speak with a trained Client Services Specialist, please call MSAA’s Helpline at (800) 532-7667, extension 154. Questions to MSAA’s Client Services department may also be emailed to MSquestions@mymsaa.org.

Written by Susan Wells Courtney, MSAA Senior Writer
Reviewed by Dr. Barry A. Hendin, MSAA Chief Medical Officer

Friday, February 28, 2020

What You Need to Know about Coronavirus


February 27, 2020
What is the coronavirus 2019 (COVID-19)?
Coronavirus 2019 (COVID-19) is a respiratory illness  that can spread from person to person. At this time, it’s unclear how easily the virus that causes COVID-19 is spreading between people.

What are the symptoms of COVID-19?
Most people who contract COVID-19 will have mild symptoms, but some people will have more severe symptoms. Symptoms can include:
• fever
• cough
• difficulty breathing (shortness of breath)

How can I help protect myself?
There are simple everyday preventive actions to help prevent the spread of respiratory viruses.
These include
• Wash your hands often with soap and water for at least 20 seconds. Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available.
• Avoid close contact (at least 3 feet away) with people who are sick.
• Avoid touching your eyes, nose, and mouth with unwashed hands.
• Cover your cough or sneeze with a flexed elbow or tissue, then throw the tissue in the trash.
• Clean and disinfect frequently touched objects and surfaces.

What does COVID-19 mean for people living with MS?
Many disease modifying therapies (DMTs) for MS work by modifying or suppressing the immune system. People with MS who are treated with these therapies can face an increased risk of infections. If you are taking a DMT and believe you have been exposed to COVID-19 or are confirmed to have this infection, please contact your neurologist or primary care healthcare provider.

Other resources