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Archive for the tag “multiple sclerosis”

On the Horizon: The Future of MS Treatments

By Benjamin Segal, MD, as told to Kara Mayer Robinson

We’ve come a long way in treating MS — it’s been one of the biggest success stories in medicine. Over the last 20 years, there has been a revolution in drugs that change the course of the disease, particularly relapsing-remitting multiple sclerosis (RRMS).

Back when I was in training, we had no drugs that altered the prognosis of MS or prevented attacks. The only thing we had were steroids. We gave them to people during serious attacks to speed recovery. But we had nothing to lower someone’s chances of developing the disease. We also couldn’t stop future attacks, put off disability, or make it less serious.

Now there are more than 15 FDA-approved drugs that do just that. They include shots you can give yourself, pills, and intravenous infusions. But they differ in how effective they are and the side effects they have. And we don’t have a way to predict which patient will respond best to which drug.

The goal of MS specialists now is what we call “no disease activity.” This means no relapses, no new lesions, and no ongoing development of disability. For many patients, we can achieve that, especially those with RRMS.

There have also been changes in how we look at secondary progressive multiple sclerosis (SPMS). In the last several years, three drugs have been approved for both RRMS and SPMS. Before that, there were no drugs approved for SPMS, except one very potent chemotherapy that we don’t use anymore.

We now have evidence that early treatment, and particularly treatment with certain drugs, may delay the conversion of RRMS to SPMS. In some cases, patients don’t have gradual decline over the course of decades.

What’s on the Horizon

Many new therapies are being studied to advance MS treatment even more. Two important areas of study are how to promote repair in MS and how to treat progressive MS.

Remyelination and Repair

In people with MS, myelin is destroyed, which causes a lot of symptoms. Researchers are looking at different strategies to help the body form new myelin, the protective coating around nerves.

Some clinical trials target molecules that normally suppress the growth of myelin. Researchers are now looking at a protective or pro-regenerative part of the immune system that we can manipulate to protect damaged neurons and stimulate new fiber growth.

My group at the Ohio State University just published a paper about our discovery of an immune cell that rescues damaged nerve cells from dying. It also stimulates nerve fiber regrowth. It may not only stop further damage of the central nervous system, but it may also reverse damage and restore function.

Treating Secondary Progressive MS

We’ve made progress with SPMS medication, but there’s more to be done.

Data suggests three drugs recently approved for SPMS are somewhat effective in a subset of younger people who still have new inflammatory lesions. But they’re unlikely to help those who are further along with the disease. So the quest is to find treatments for those people.

A few pills being tested in trials show promise. One of them suppresses the immune cells that are normally found in the brain and spinal cord. It stops the body from activating them. In a recent phase II trial, it slowed the progress of disability in people with inactive, progressive MS.

Finding the Right Treatment for Each Person

Right now, we can’t predict which patient will respond best to which drug. But there are a lot of ongoing studies that predict which drug will be the most effective in a given individual.

Researchers are also looking for biomarkers to develop blood tests that may tell us if someone’s more likely to respond to one drug versus another.

Vitamin D, Antioxidants, and Gut Microbiome

Some studies show that very low levels of vitamin D raise your chances of developing MS. Now there are studies to see if boosting vitamin D levels with extra supplements may tamp down new attacks or new lesions for people who already have it.

There are also studies that look at the gut microbiome and if you can manage MS better by changing the bacteria in your gut.

It’s not conclusive yet, but researchers are looking at whether certain antioxidants may alter treatment or management of MS. One is called lipoic acid. A few studies suggest it may slow the loss of brain tissue in people with MS. There will likely be future studies that look at lipoic acid and other antioxidants in greater detail.

New Ways to Manage Symptoms

One of the most common and hard-to-manage symptoms of MS is fatigue. There are studies on pills and cognitive rehabilitation therapy to treat it. There’s also a lot of research into improved prosthetics and robotics to help patients with MS to function better.

Early, Aggressive Treatment

Now that we have highly potent drugs to treat MS, there’s a debate about whether it’s better to start early treatment with aggressive drugs or to start with lower-potency drugs and then step up (escalate) to more potent ones.

A recent study suggests that people treated with higher-potency drugs from the start are less likely to transition to SPMS years down the line. New studies that compare aggressive early treatment to escalation therapy may help us know more.

The Outlook

Right now, many of my patients with MS are living full lives. I’ve seen people who’ve been relapse-free for 2 decades with no new lesions. No one would know that they had MS.

This is a completely different situation from when I was a resident in training. Then, most people we saw went on to need assistance devices and had to stop working.

A cure is very difficult to predict. We’re more likely to find treatments that help relapsing-remitting disease and maybe completely stop the progress of the disease. A cure may take a little longer.

MS: Strangest Symptoms From Head to Toe

Extreme fatigue, clumsiness, weird prickly sensations, sluggish thinking, wonky vision — these are classic and common first symptoms of multiple sclerosis, or MS. But the expected stops here. Damage to the central nervous system, aka your brain and spinal cord, is what causes these symptoms. That’s a wide range of functions that affect many different people. So it can show up in some strange and varied ways. Watch this slide show (1 / 15).

https://www.webmd.com/multiple-sclerosis/ss/slideshow-unusual-symptoms-ms?ecd=wnl_mls_040921&ctr=wnl-mls-040921_leadCTA&mb=q80%2F%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3D

Top 7 benefits of having pets in our MS life

There is more to it than just the snuggles. Having pets in our lives has a wide range of benefits. They help us cope, lift us from feelings of loneliness and depression, and get us outside for a bit of sunshine and exercise.

1. Pets keep us company.

Living with a companion animal can help ease feelings of isolation. Having a buddy by your side can make such a big difference in minimizing the feelings of loneliness. Even if the conversation is only one way…

2. Pets can help us fight depression

Taking care of pets (walking them, grooming them, petting them, playing with them) takes you out of yourself and helps you feel better. Our pets’ love is unconditional so, good day or bad, they have a lot to give us. Well, that is unless your name is Hans who, when he doesn’t get the treats he persistently begs for in the morning, may not be spreading the love quite as far.

3. Pets give us a sense of support and pleasure

Our life with MS should focus more on the good parts, not the un-fun stuff, right? Having pets makes us feel good. They’re cute and they’re sweet and they’re funny and they’re snuggly. All good stuff that makes living with MS a bit more bearable.

4. Pets get us outside when we might not otherwise

When we walk Spot, we sometimes meet others along the way, stopping for conversation, watching dogs do the funny things they do. It’s a great social outlet. Plus, there’s the added benefit of soaking some of that sun vitamin!

5. Pets calm us and relieve our anxiety

This is a big one for me as I am slightly neurotic. Hans is chill so he keeps me chill, not an easy feat. Om.

6. Pets help us minimize stress

This is huge for us, as stress is often the culprit when our symptoms flare up.

7. Pets help us improve our physical fitness

After all, exercise is important for MSers and, taking your dog for short walks or tossing their favorite toy in the backyard, helps keep us moving. This includes basic stretching. I can’t tell you how many times Hans watches us at home, with keen interest and curiosity, as we stretch or do some yoga. Eventually, he gets right on the floor with us to do a bit of stretching himself. Kitty Yoga. Hilarious!

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.

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