Promising Experimental Treatments for Multiple Sclerosis

 

What’s on the horizon for people with multiple sclerosis? Dedicated doctors, scientists, and volunteers are working today to answer that question and find tomorrow’s breakthroughs.

Several experimental treatments are being studied to figure out whether they’re safe and effective for people with different kinds of multiple sclerosis (MS) and at different points in their journey.

The main research goals are to find new ways to stop MS from getting worse or even to reverse nerve damage and the disability that can come with it. Eventually, the hope is to end MS forever.

That’s a tall order for sure, but progress is being made in laboratories and medical centers all around the world.

Resetting Your Immune System

When you have multiple sclerosis, your immune system attacks your central nervous system. So what if doctors could flush out your “bad” immune system and give you a new one? That’s the basic idea behind a type of bone marrow transplant called autologous hematopoietic stem cell transplant (AHSCT).

How does this work? Thrower explains it this way:

• Immature stem cells made in your bone marrow are removed from your blood.
• These cells are sort of cloned and many copies are made.
• The bad immune system’s “hard drive” is wiped clean with high-dose chemotherapy.
• The immune system is rebooted with the fresh stem cells that don’t attack your nervous system.

Since they’re your cells, they can’t be rejected. But it will take your body about a month to replace your immune system. That puts you at risk of potentially life-threatening infections, including COVID-19 and others.

The procedure is not new but not approved by the Food and Drug Administration. It could be soon, says Ben Thrower, MD, a neurologist and medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta and senior medical advisor for the Multiple Sclerosis Foundation.

In fact, the National Institutes of Health is sponsoring a clinical trial comparing AHSCT against the most widely used and effective treatments for relapsing-remitting MS.

Even though AHSCT isn’t approved, experts know a lot about the best candidates for this ambitious therapy. It’s most successful in people with aggressive relapsing-remitting MS who are under age 50, according to Thrower.

This is the same procedure actress Selma Blair had in 2019, he adds. Her journey is the subject of a 2021 documentary called Introducing, Selma Blair.

Talk to your neurologist about whether you should try AHSCT. Many Americans go to other countries for this treatment.

Other New Stem Cell Approaches

Doctors are exploring other stem cell approaches. One stem cell transplant therapy being tried at Atlanta’s Shepherd Center is intended to treat all types of MS: relapsing-remitting, primary progressive, and secondary progressive. The procedure uses what’s called mesenchymal stem cells. It may be able to repair damage and reverse disability.

Mesenchymal cells are more mature than embryonic stem cells, which have a better ability to repair but are risky. “Once you put embryonic cells into the body, you lose control and you can’t take them out once they’re in. They can turn into cancerous cells or tissue you don’t want them to develop into,” Thrower says.

“Embryonic stem cells are like a genie in a bottle, you don’t know whether you’ll get a good genie or a bad genie,” he says.

Mesenchymal cells offer more control and are safer to use. The trial in Atlanta infuses these cells into volunteers through a vein. Unlike AHSCT, it doesn’t destroy the immune system.

But the jury is still out on this approach. It’s only in the first phase of research, so it’s years away from becoming an approved treatment.

Ways To Help Advance MS Research

 Researchers are committed to finding solutions for everyone affected by MS — the very people who hold the key to the answers. Without participants in research studies, MS research would come to a standstill.
 
People with MS, and sometimes family members, can help advance MS research by:

• responding to surveys online
• sharing their voices and ideas through NARCOMS and iConquerMS^TM, organizations that amass volunteer-submitted information
• volunteering for clinical trials and other studies
• donating DNA from saliva and blood samples
• arranging for brain or spinal cord tissue donation to a tissue bank; this type of donation is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS.  Blood samples also can be donated for use in MS research studies.

Assess each opportunity and make an informed decision before agreeing to participate — understand the possible benefits and risks. See our Guide to Participating in Clinical Trials.

Everyone can get involved to support research investment, or advocate so that Congress provides funding for MS research and supports other efforts such as understanding incidence and prevalence. 

 

Participate in a Clinical Trial

Clinical trials help to determine if treatments and other interventions are safe and effective. Studies enrolling diverse populations are monitored to ensure that the rights and safety of all participants are protected. Without the participation of people with MS, it would be impossible to develop new and better solutions.

Learn More

Surveys and Other Research Studies

Conducted by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies aiming to develop or improve products for people with MS.

Participate Now

Participate in Genetic Studies

By donating DNA from blood samples, you are helping research that could lead to ending MS forever. Learn more about genetic studies and how you can participate.

Give DNA

Donate to Tissue Banks

People living with MS may hold the key to finding a cure. Learn more about tissue banks and donating brain and spinal cord tissue for researchers studying MS.

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COVID-19 Studies Recruiting People with MS

Explore opportunities for participation in research studies seeking to understand the impacts of COVID-19 and how the vaccine can affect people living with MS.

Learn More

Research Studies: Newly Diagnosed with MS

If you are new to MS, you have the chance to help advancements in MS research. Discover studies researching the earliest stages of MS looking for participants.

Learn More

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NARCOMS Patient Registry

Register as a willing MS research participant to facilitate multicenter studies. Initiated by the Consortium of MS Centers.

Visit NARCOMS

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iConquerMS™ Online Portal

Share information and ideas for research topics important to you. Each contribution and suggestion brings us closer to faster diagnoses and improved treatments.

Visit iConquerMS™

 

MS in the Fall and Winter: 5 Ways to Stay Well

 

From: WebMD

 

After the hot, humid days of summer, the colder temperatures in the fall and winter can come as a shock to our bodies. If you have a condition like multiple sclerosis (MS), cold temps can make your symptoms worse and make you flat-out uncomfortable. You might find that it’s harder to move your limbs, you get more muscle spasms than normal, or your muscles feel tighter.

Doctors aren’t sure why cold temperatures make MS symptoms worse. But they think that the condition can alter the way you feel temperature changes. 

If your symptoms get worse in cold weather, it’s usually for a short time. A few simple tips can help you stay comfortable and warm in the fall and winter.

Try to get moving. When you have MS, there may be times when you find you can’t move around as easily as you’d like. When you can, try to get some moderate physical activity like walking or stretching. It’ll help you burn energy and warm up.

Dress in layers. This will help keep you warm. And if you get too hot, you can easily remove layers and stay comfortable. When it’s very cold, it’s a good idea to wear hats, thick socks, or lined boots. This will keep heat from escaping through your head or feet.

Keep your hands and feet warm. Doctors believe that MS can cause blood vessels in your hands and feet to overreact to cold temperatures. If you have MS, you may also be at risk for Raynaud’s phenomenon, a condition in which your fingers and toes lose heat. They turn from white to blue to red as the blood begins flowing again. You may feel numbness, pain, or like someone is sticking you with pins and needles.

To protect your hands and feet from the effects of the cold, try wearing hand warmers or using a heating pad. But don’t place the heating pad directly on your skin. It could cause burns or blisters.

Warm your insides. The easiest way to do this is to eat hot meals like soup. You can also sip hot drinks like tea or coffee. Pour them into an insulated mug to keep them warm longer and help limit your trips to the kitchen.

Get some sunshine. Even on crisp fall and cold winter days, who doesn’t love the feeling of sunshine on their shoulders? Step outside and soak up some rays. You’ll warm up, and you’ll help your body make some much-needed vitamin D. An added benefit? A little sunshine might help boost your mood.

What to Know About Lesions and MS

Multiple sclerosis (MS) is an autoimmune disease. For people with MS, the immune system mistakenly attacks the protective covering on nerve fibers. This covering is called myelin.¹

The attacks by the immune system lead to the formation of lesions in the central nervous system (CNS). Lesions are areas of damage or inflammation.¹

What are lesions?

The myelin sheath is a layer around the nerves. It allows for efficient transmission of signals between the brain, spinal cord, and the rest of the body. When the myelin is damaged, the nerve signals become disrupted and neurons can degenerate. This can lead to various MS symptoms.^1,2

A lesion is a damaged or scarred area. In MS, they are caused by the inflammation from the immune system attacking the myelin. Lesions are sometimes called plaques. Not all lesions in the CNS are caused by MS. But lesions are an important sign of MS. Doctors use the presence and location of lesions to help diagnose and track MS.^1,2

MS lesions can occur throughout the CNS, including the brain, spinal cord, and optic nerves (the nerves that transmit signals from the eyes). Lesions are caused by focal inflammation that results in damage to the myelin and nerves. This damage ultimately leads to scar tissue. Lesions can vary in size and location. Lesions can be detected with imaging techniques such as magnetic resonance imaging (MRI).

What do lesions look like on MRI scans?

Doctors use MRI scans to look for lesions. In MS they often use an MRI scan with contrast. This means they inject a contrast fluid that contains gadolinium. The gadolinium shows up white (“lights up”) on certain MRI sequences where inflammation is happening. So, doctors look for white patches on these MRI sequences to detect active lesions with inflammation. Lesions older than 3 months typically will not light up with gadolinium.

While gadolinium only highlights newer lesions with ongoing inflammation, other MRI sequences can reveal all lesions, new or old, without any gadolinium. Combining these different MRI techniques allows doctors to identify both newer active and older inactive lesions.

Over time, some lesions may show up as a black spot on some MRI sequences. This means the CNS tissue has suffered so much damage that it completely degenerates or disappears. Some lesions have been shown to grow slowly over time. These are called chronic active lesions or smoldering lesions. Research shows that smoldering lesions may be a risk factor for progressive MS.

How are lesions used to diagnose and monitor MS?

Lesions play an important role in the diagnosis and monitoring of MS. Diagnosing MS often involves imaging, like an MRI, to look for signs of damage in the CNS. But MS is not the only cause of lesions. Radiologists review every MRI and look for signs of diseases. An MRI report may include lists of all possible conditions that could explain the results.

An MRI with lesions does not mean you definitely have MS. For a final MS diagnosis, a doctor will typically use a physical exam and questions about your medical history. They may confirm the diagnosis or rule out other conditions with other tests like bloodwork or a spinal tap.

If you are already diagnosed with MS, your doctors may use MRI images to look for evidence of ongoing disease activity such as new lesions. Current MS disease modifying therapies help prevent development of new lesions. New lesions on an MRI might suggest your current therapy is not working for you. MRIs taken over time can also show changes in old lesions. Sometimes old lesions can shrink or fade overtime. If lesions are growing or spreading, it may mean you need to consider new treatments.

If you are getting multiple MRIs over time of the same area of your body, try to get the MRIs at the same facility. This helps with tracking because the MRI machine and technique will be more consistent.

You may have access to MRI results before meeting with your doctor. But it can be a good idea to wait to review results with a professional. Doctors are trained to interpret the results and can address any concerns you may have.

 

 From: https://multiplesclerosis.net/clinical/what-are-lesions?utm_confid=32f64fac94bd683a885744accd9fcdfdb16ae862446753ab1f7cc160d11f8d21&utm_term=Article_1_Button&utm_source=ActiveCampaign&utm_medium=email&utm_content=Understanding%20MS%20Lesions&utm_campaign=MultipleSclerosis%20net-Newsletter-10%2F19%2F2023

 

The MS Fall

The symptoms of MS, such as trouble with mobility, problems with your senses, and even some medication side effects, raise your odds for a fall. They may happen while you move throughout your house, walk around unfamiliar settings, or trip or slip on certain surfaces.

These accidents can seem unpredictable, but if you’re proactive, you can lower your risk for falls and avoid the physical injuries and mental stress they can cause. 

 Talk to your doctor. They can help you identify things that may affect your fall risk, like fatigue, low energy levels, or other symptoms that might cause you to be more likely to have an accident. Your doctor can help you manage and minimize the effects these factors may have on your safety.

Get a gait check. Trouble with walking, also known as your gait, is a common problem for people with MS. A physical therapist can diagnose any gait disorders and suggest exercises that could help you safely walk.

Get an expert assessment. Your health care team can give you a fall risk screening, which the American Academy of Neurology recommends for anyone with MS. There are different ways to do them, but usually, they’ll ask about any falls you’ve had, when you’ve had them, the causes or situations that lead to them, or if you had any injuries afterwards. They may also ask a family member about them.

Begin an exercise program. Your doctor or physical therapist can help you create an exercise plan that can improve your balance, posture, core strength, and gait. That can help you lower your chances of falling. Rehabilitation programs, including physical and occupational therapy, could also help you avoid accidents.

Keep a diary to record any of your falls. You can bring this in to help your doctor give you a more accurate screening. From there, they’ll be able to tell if you need extra help to avoid getting hurt.

Learn how to fall. Yes, there are good and bad ways. If you learn how to do it safely, you can lower your odds of an injury. Your doctor can help you learn ways to move your body when you feel that you’re about to lose balance. They can also teach you ways to get off the floor after a fall. This can help build your confidence and make you less likely to get hurt.

 Ask for help. If you have issues walking or tend to fear that you’ll lose your balance, speak up. You’re not “giving in” to your condition by seeking help. Extra support from your doctors, family, and friends can help you avoid emotional stress, fatigue, and other injuries.

 

 

 

 

 

Diet Quality Linked to Less Disability Progression in People with MS

 People who reported healthy eating also reported significantly less disability progression over more than seven years in a study of 603 people with MS. This new study from the University of Melbourne in Australia is part of an ongoing effort to provide rigorous results on how lifestyle factors may affect MS outcomes.
 
Background: Diet is important in MS, possibly affecting disease activity and immune function. There is no definitive diet that has been scientifically proven to be beneficial in changing the course of MS. It is more challenging to show the benefits of a diet as opposed to a medication – one reason being that it is difficult to make sure that participants adhere to the diet. But this kind of research is needed to determine how people with MS and their health care providers can determine whether making dietary changes will improve outcomes.
 
Researchers at the University of Melbourne established the HOLISM study in 2011 - Health Outcomes and Lifestyle In a Sample of people with MS. This study is looking at the effects of diet and other lifestyle factors on MS in 2,500 participants who are assessed every 2.5 years. Previous results showed that better diet quality was linked to increased quality of life in this group.
 
The Study: The investigators analyzed data from 602 participants in the HOLISM study. Diet quality was assessed using a questionnaire that reported on the types of healthy and unhealthy foods eaten. Disability progression was measured using a self-reported assessment of mobility impairments.
 
Results: People who reported higher quality diets were significantly less likely to report disability progression after 7.5 years. Responses relating to higher dairy consumption and eating more fat  had the strongest link to increases in disability. Eating more fruits/vegetables, fiber, omega-3 fatty acids, and healthier food choices were also significantly associated with less risk of progression, but the links were less consistent.
 
What does this mean? This ongoing study is adding information needed to help people with MS and their health care providers understand how diet impacts MS and what changes may improve outcomes for people with MS. These results in particular show that maintaining diet quality may be important in reducing disability progression.
 
While we do not yet know that a specific diet will help your MS, any positive changes you make are likely to help your overall health and well-being.
 
Learn More…

• Learn how different food plans could affect MS in an article from Momentum Magazine
• Watch a webinar discussing dietary recommendations from the Society’s Ask an MS Expert series
• Get tips and strategies for meal prep from a RealTalk MS podcast
  

Tips to Manage MS Fatigue

 Read the tips on:

https://www.webmd.com/multiple-sclerosis/ss/slideshow-tips-to-manage-ms-fatigue?ecd=wnl_mls_072823&ctr=wnl-mls-072823_lead_title&mb=q80%2F%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3D