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Archive for the tag “multiple sclerosis”

Am I Lazy or Is MS Actually to Blame?

By Matt Allen G · October 15, 2020

Most people living with multiple sclerosis have probably experienced the feeling that others think they are lazy. Or maybe they have flat out been accused! At the very least, I’m sure everyone has encountered at least one other person with MS who has shared this experience. It can be painful to feel like you’re being looked at as a human sloth due to your inability to “keep up” because if you have MS, you can’t help it. MS commonly causes people to not be able to do the things they once could. But lately, I’ve been catching myself wondering if I really am lazy.

Are people with MS lazy?

Why do people think we are lazy? Well, in my opinion, this is an easy question to answer. People tend to believe what they see. I think it’s human nature. With that in mind, what do we know about symptoms such as fatigue, spasticity, pain, or vertigo? They’re invisible. You can’t see them, which means the people around you only get to see you “lying around doing nothing.” They see the ‘what’ but not the ‘why.’

Making assumptions based on appearances

Since people usually accept the easiest explanation as the most likely explanation, you can see why they would jump to the conclusion that you’re just being lazy. I find this really frustrating, but I do understand it. I’m sure I’ve made similar assumptions based on appearances even when I know that you can’t judge a book by its cover. That’s just how our brains work. It’s up to us to catch ourselves in moments like this and seek the entire picture before reaching a conclusion.

Explaining that I’m not lazy

This all leads to one of the most challenging and irritating parts of everyday life with MS: trying to explain to people that there is something there, even though they can’t see it. It’s unfortunate, but this is a burden that falls on us – the ones living with this illness. It can be really hard to explain something that we ourselves don’t entirely understand. But I guess it’s just another responsibility that came with MS. Having to teach others around us about a disease we are often still learning about ourselves. Sometimes we succeed, but a lot of the time we don’t. That is one more thing in life with MS that we don’t have much control over.

But what if it’s not MS?

Despite everything I know, and despite the fact that I would tell anyone else saying what I’m about to say that they are wrong, I have caught myself wondering…am I? Am I lazy, or is it really just my MS? The thought comes from a small part of my brain, but it actually raises many questions for me. Questions like, “Why do I feel lazy?” “What am I doing to make myself feel lazy?” and “What can I do to stop feeling this guilt?”

Why couldn’t I get more done?

I’ve literally been having a hard time falling asleep at night because this question has really been weighing on me lately. I lie there thinking about everything I accomplished for the day and wondering why I couldn’t do more. Why I didn’t exercise. Contemplating how I might be able to get more done tomorrow. Listening to my inner-monologue debate, whether it’s a matter of how or if I can achieve more. Because maybe it really is just me? Perhaps I really am just lazy?

What I know and feel don’t always match

This is just one example of how MS can cause conflicting thoughts and emotions. I know I’m not lazy. I hate it when I’m not busy. I hate feeling like I wasted another day. I could never live a life of idle luxury without losing my mind. I know about and have felt the benefits of exercise, especially when I compare it to how I feel when I don’t.

At the same time, I often feel like I can’t keep up with my responsibilities in life. Sometimes I feel like the world is asking way too much of me, sometimes. So, at times I feel like I am lazy and subconsciously using my MS as an excuse. This all leads to the heavy feeling of guilt that’s been keeping me up at night. What I know and what I feel about my MS don’t always match.

Trying to make sense of how I feel

Turning back to my bedtime reflecting on the day and trying to make sense of the mess of thoughts and feelings I’ve been living with, the answer seems obvious. I’m currently not doing as much as I did even just six months ago. I’m not going on my morning walks, I’m not leaving the house to run errands, and I’m not exercising the way I should be. It would be easy to blame this on the pandemic, but that’s an excuse that can quickly be debunked with ease. The only blame I can actually attribute to that excuse is how it “shook up” my routine.

Getting back over the hump

Just because things are different and maybe even a little more complicated doesn’t mean they are impossible. I know I can still do most of those things – I’m specifically referring to exercise – even if they aren’t as easy or comfortable. But because I’m not? I’ve found myself back at the bottom of the hill you have to overcome to feel the positive benefits of exercise. I think if I can get back over that “hump,” I’ll start feeling less lazy and more productive because getting the amount of work and healthcare chores I’ve gotten done lately doesn’t seem to be helping.

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) *Please note that the current flu vaccine is NOT effective against COVID-19; it is only noted to otherwise help people remain in good health.

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

From: The Coronavirus and MS: What You Need to Know. The Motivator – Winter/Spring 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 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.

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

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

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 ProvidersHealthcare 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 RightsThere 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

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

New Study Links Obesity to MS, and to Worse Treatment Responses in Children and Teens

SUMMARY:

In a new study from Germany of 453 children and teens with MS, compared with more than 14,000 children without MS, those who were overweight or obese had twice the risk of developing MS, compared with non-overweight children.

They also had significantly more relapses on treatment with first-line treatments, and increased use of second-line treatment. Otherwise, there was no association found between obesity and disease activity, imaging scans, EDSS progression, or other measures.

These findings need to be confirmed with further study. It is important to note that not everyone who is obese during adolescence will develop MS, and also that many people develop MS without having been obese during adolescence.

The team (Brenda Huppke, MD, Peter Huppke, MD, and colleagues at University Medical Center Göttingen, Germany) published their findings in JAMA Neurology (posted online July 15, 2019)
DETAILS
Background: Several risk factors, including genes, exposure to infections, and environmental factors, have been identified as increasing a person’s susceptibility to developing multiple sclerosis. In addition, there is a growing body of evidence that childhood/adolescent obesity can increase the risk of developing MS. In one study, being overweight or obese was associated with an increased risk of developing MS or clinically isolated syndrome (CIS, a first clinical episode suggestive of MS, indicating increased MS risk) in girls, in a study that compared 75 children or teens with MS or CIS with the health records of more than 900,000 healthy children or teens.

Additional research is needed to understand this association. It is important to note that not everyone who is obese during adolescence will develop MS, and also that many people develop MS without having been obese during adolescence.

The Study: The researchers reviewed the medical records of 453 children and adolescents with relapsing-remitting MS. They looked at disease activity captured on imaging scans; treatment information, and EDSS scores measuring levels of physical disability. They also compared body mass index with information obtained on 14,747 children/adolescents in a Germany-wide child health survey.

Results: The team found that both boys and girls who were overweight or obese had twice the risk of developing MS, compared with non-overweight children or adolescents. Comparing responses to treatment with interferon beta or glatiramer acetate, the team reported that obese children had significantly more relapses on treatment, and were more likely to have switched to second-line treatment. Otherwise, there was no association found between obesity and disease activity, imaging scans, EDSS progression, or other measures.

The team (Brenda Huppke, MD, Peter Huppke, MD, and colleagues at University Medical Center Göttingen, Germany) published their findings in JAMA Neurology (posted online July 15, 2019)

Conclusions: This study provides strong support for a link between obesity and development of MS in both boys and girls. It also indicates a significantly worse response to first-line MS treatments and a greater likelihood of switching to second-line treatments among obese children. The authors suggest that obesity may affect pharmacokinetics – how a drug moves into, through, and out of the body. Further research is necessary to confirm these findings, and to understand the mechanism.
 

Stem cells hold promise for MS

Stem cells

There is exciting and innovative research and progress occurring related to the potential of many types of stem cells for slowing MS disease activity and for repairing damage to the nervous system. In light of the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, we believe that the potential of all types of cell therapies must be explored.

Stem cell therapy is any treatment that uses or targets stem cells, which are the types of cells that differentiate into many different specialized cells in our bodies. Stem cells are found in both embryos and adults.

Many types of stem cells are being explored for their potential benefits for treating multiple sclerosis. Only when the results of these and subsequent clinical trials are available will it be possible to determine what the optimal cells, delivery methods, safety and actual effectiveness of these current experimental therapies might be for people with MS.

Although cell based therapy has generated a great deal of interest and holds promise, the field is in its infancy and much more research is needed before cell based therapies become a MS treatment option.

Different Types of Stem Cells

  • HSCs (haematopoietic stem cells) – adult stem cells that are found in bone marrow and blood. HSCs are capable of producing all of the cells that make up the blood and the immune system.
  • MSCs (mesenchymal stem cells) – adult stem cells found in several places in the body, including the bone marrow, skin and fat tissue. They produce cells which help other stem cells function properly.
  • NSCs (neural stem cells) – specialized stem cells responsible for repairing nerve-insulating myelin in the brain. These can be derived from other types of stem cells such as mesenchymal cells.
  • hESCs (human embryonic stem cells) – stem cells derived from donated embryos. They can naturally produce every type of cell in the body. One concern about their potential therapeutic use is that they have been found to cause tumors.
  • iPSCs (induced pluripotent stem cells) are engineered from adult cells to produce many types of cells. One concern about their potential therapeutic use is that they have been found to cause tumors.

www.nmss.org  The National Multiple Sclerosis Society

Multiple Sclerosis and CBD

Multiple Sclerosis (MS) is a disease that impacts the body’s central nervous system (CNS) including the brain, optic nerves, and spinal cord. MS consists of an abnormal response of the body’s immune system. From here, the immune system targets myelin (a substance that surrounds and insulates the body’s nerves), and myelin gets damaged, which then produces scars (sclerosis). These scars are believed to be the cause of the painful symptoms MS patients experience.

Although MS causes various painful symptoms, over 85 percent of MS patients experience spasticity. Fortunately, though, based on the studies have been conducted on cannabis and MS so far, most indicate that cannabinoids are associated with self-reported spasticity improvements. It has also been found that CBD contains anti-spasm properties. Additionally, the American Academy of Neurology has expressed that cannabis is effective for the treatment of pain and spasticity. Then, one Israel study discovered that cannabis can safely alleviate pain in older MS patients and those with other chronic conditions, such as Crohn’s Disease.

Currently, 20-60 percent of MS patients consume cannabis, and many use topical cannabis products as their primary delivery method. To help treat muscle spasms and pain, it’s common for MS patients to use cannabis topically, so they can apply the medicine onto specific areas of their body. To achieve localized and rapid relief though, it’s recommended to use topical products with one example being CanniMed’s products, from which numerous Canadian MS patients have benefited.

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