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08Jan

The Difficulty and Honor of Hearing From Those Newly Diagnosed With MS


I try to offer resources and reassurance, but there are some answers I just don’t have.

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When a person is newly diagnosed with MS, they and their family need to know that things will be all right.Tay Jnr/Getty Images


I received far, far too many messages in 2018 from my family, friends, friends of friends, and even people I’ve never met. The senders are always concerned, often bewildered, and sometimes quite worried. They ask for guidance; they seek advice; they long for credible resources.

What they hope for more than anything is honesty … but they also hope for answers I cannot provide.

These, of course, are people who get in touch because someone they know has recently been diagnosed with multiple sclerosis (MS).

I am honored that people reach out to me when looking for answers. It means — to me at least — that I am somehow meeting my goals of making the experiences and the information I share relatable and understandable to the broader MS audience.

But I’m saddened at the number of newly diagnosed members who continue to be added to our club's roster.

RELATED: New CDC Registry to Monitor MS Prevalence and Disease Trends

So Many People Are Unaware of the Resources Available to Them

I am overwhelmed by the number of people who want to help in any way they can but who are unaware of the resources available to them as people who care about someone with MS.

These organizations, like so many others, aren’t just for people living with MS. They can help those who want to help those with the disease, too. Here’s but a partial list:

RELATED: MS Resources

An MS Diagnosis Affects You and Those Around You

When I’m approached about a particular MS symptom or coping strategy, I’m almost always able to offer up an article or two on the subject. This year, I will enter my 14th year of writing about living with multiple sclerosis. In that time, I've amassed quite a library of MS-related topics (just google “Trevis Gleason” and your MS topic of interest).

But people are looking for more than a simple blog post or article.

As many people with MS know, those first months after diagnosis are harrowing. What we may not know is that there are people who surround us — family, friends, coworkers, neighbors, teachers — who are having a difficult time with it in their own way. They need to know and understand some of the same things that the person with MS does.

Namely that things will be all right. They won’t be the same; they’ll be different even if they don’t feel different.

RELATED: The Wide-Ranging Impact of Multiple Sclerosis on My Social Circle

How to Help When Each Person’s MS Experience Is Different

Also, it’s important to know, particularly for those of us who get those calls and emails, that everyone’s journey with MS is different — just as each person is different. How I have found my way might not be the path for everyone. How one person with MS has done, taken, or experienced any one thing to make their life with multiple sclerosis a little bit better isn’t all that relevant.

What’s better, I think, is for the lot of us to drop bread crumbs along our journey and leave a general direction that others may choose to follow. No one person’s path can be trod by another. The more crumbs on any particular topic, however, and a person new to our community can see generalities that have worked for many.

RELATED: 10 Tips for People Newly Diagnosed With Multiple Sclerosis

I will continue to get those messages in 2019. Many readers of this column will as well. It’s important that we each offer what support we can at that moment. What is equally important is to steer those with MS or those who are concerned for someone with MS to communities who have helped us find our way as well.

None of us got here alone, and no one should have to go it alone — in giving advice as well as living with a new diagnosis.

Wishing you and your family the best of health.

Cheers,

Trevis

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25Dec

Study: Epstein-Barr Virus Infection Linked with Multiple Sclerosis

Study: Epstein-Barr Virus Infection Linked with Multiple Sclerosis
Jennifer Barrett, Associate EditorPublish Date: Monday, June 25, 2018

A new study links Epstein-Barr virus (EBV) infection with multiple sclerosis (MS), confirming evidence from previous studies and providing support for targeting EBV-infected immune cells associated with chronic MS lesions as a potential treatment.

In the study, which was published in Neurology: Neuroimmunology & Neuroinflammation, the researchers analyzed autopsied brain samples from an MS brain tissue bank and from healthy, non-MS samples. After analyzing for EBV presence, the researchers found signs of EBV latent membrane protein 1 (LMP-1) in 93% of MS brain samples, and in 78% of healthy, non-MS brain samples. There was a greater percentage of MS brains containing CD138+ plasma cells and LMP-1 rich populations.


EBV early lytic protein was also seen in 46% of MS brains, primarily in association with chronic lesions, and 44% of non-MS brain tissue.


Additionally, the researchers noted that 85% of MS brain samples contained a higher percentage of B-cells positive for EBV-encoded RNA, but almost none of these cells were present in brain samples from the control group.


“We observed that EBV is present in both MS and control brains, with EBV-infected B cells and plasma cells more prevalent and localized to MS brain lesions in the parenchyma,” Chris Haqq, MD, PhD, executive vice president of Research and Development and chief scientific officer of Atara Biotherapeutics, said in a press release. “By contrast, EBV-infected B cells and plasma cells in non-MS brains were shown to be localized to vascular tissues.”


Atara is currently developing 2 therapies, ATA188 and ATA190, designed to precisely recognize and eliminate EBV-infected B-cells and plasma cells in the central nervous system that may incite autoimmune responses and MS pathophysiology. Previous studies have suggested that the treatments may lead to clinical improvements in MS symptoms and early-phase clinical trials are ongoing.


“These findings advance the understanding of EBV’s potential role in MS pathogenesis and provide support for targeting EBV-infected immune cells associated with chronic MS lesions as a potential treatment for this severe autoimmune disorder,” Dr Haqq concluded in the press release.

Specialty Pharmacy Times' new sister site, NeurologyLive, offers even more resources for pharmacists working with multiple sclerosis.

Reference


Moreno MA, Or-Geva N, Aftab BT, et al. Molecular signature of Epstein-Barr virus infection in MS brain lesions. Neurology: Neuroimmunology & Neuroinflammation. 2018. Doi: https://doi.org/10.1212/NXI.0000000000000466   








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21Dec

Food Allergies Linked to MS Relapses

Food Allergies Linked to MS Relapses

MS patients with food allergies also more likely to have lesions

by Contributing Writer, MedPage Today

Food allergies were linked to increased disease activity in patients with multiple sclerosis (MS), researchers reported.

MS patients with food allergies had more relapses and a higher likelihood of gadolinium-enhancing lesions on MRI than patients with no known allergies, reported Tanuja Chitnis, MD, of Brigham and Women's Hospital in Boston, and colleagues in the Journal of Neurology, Neurosurgery & Psychiatry.

"Food allergies perturb the immune system in ways that seem to increase MS inflammatory activity," Chitnis told MedPage Today.

"Our results highlight a previously unknown relationship between food allergies and the incidence of inflammatory new lesions in multiple sclerosis," she added. "This finding could lead to new therapeutic strategies to curtail and prevent relapses in MS patients."

Other studies have examined the relationship between MS and allergies as well as the coexistence of other autoimmune diseases with conflicting results, noted Bianca Weinstock-Guttman, MD, of the University of Buffalo in New York, who was not involved with the research.

"Interestingly, a previous study on pediatric MS patients identified that food allergies that developed within the first 5 years of life were associated with a lower risk for relapses," Weinstock-Guttman told MedPage Today. "Immunological differences developed too early versus later-life food allergens between the pediatric to adult population may be an explanation for the discordant results."

In this study, a subset of 1,349 patients enrolled in the Comprehensive Longitudinal Investigation of Multiple Sclerosis at the Brigham and Women's Hospital (CLIMB) study completed a self-administered questionnaire about environmental, food, and drug allergies. All patients had an MS diagnosis according to 2010 McDonald criteria; patients with a known allergy to any disease-modifying therapy were excluded from the analysis.

The average age of patients was about 50, and mean disease duration was about 16 years. About 75% of patients had relapsing remitting multiple sclerosis (RRMS). More than half of the sample (753 patients) had an MRI scan with gadolinium within ±90 days of the clinic visit when the allergy questionnaire was completed.

In total, 922 MS patients reported any allergies. More men reported no allergies (35%) than any allergies (21%); other variables were comparable between the two groups. Expanded Disability Status Scale (EDSS) scores and Multiple Sclerosis Severity Scores (MSSS) were similar between patients with allergies and those without.

The researchers grouped patients into one of four groups: environmental allergies (n=586), food allergies (n=238), drug allergies (n=574), and no known allergies (n=427).

Multivariable analysis controlled for sex, age at symptom onset, race, disease category, and percentage of time on disease-modifying therapy. Having any allergies was associated with a 1.22 times higher rate for cumulative attacks compared with the no-allergy group (P=0.0204) in univariate analysis, but in adjusted analysis, this difference disappeared (P=0.1497).

When stratified by allergy, however, the food group had a 1.38 times higher rate for cumulative number of attacks than patients with no known allergies (P=0.0062). In adjusted analysis, this difference remained significant (1.27; P=0.0305). In contrast, the environmental and drug allergy groups did not show significant differences compared with the no-allergy group.

The food allergy group also showed more than twice the likelihood (OR 2.53, 95% CI 1.25-5.11; P=0.0096) of having gadolinium-enhancing lesions on MRI.

"The microbiome known to interfere with the systemic immune system probably is an important factor," observed Weinstock-Guttman.

"Further studies on microbiome and dietary interventions, especially in patients with specific food allergies, may provide helpful knowledge for better and more specific control," she said. "The influence of specific disease-modifying therapies that can affect disease outcome but also change the microbiome should be considered."

This analysis was based on a cross-sectional study; it cannot establish causality, Chitnis and colleagues noted. It was limited by self-reported allergies that were not confirmed by an allergy specialist. The questionnaire could not differentiate between true food allergy and other adverse reactions to food, they added. The study also had no information about patients' MS treatments.

The CLIMB study is supported by Merck Serono and the National MS Society Nancy Davis Center Without Walls.

The researchers reported relationships with Verily Life Sciences, Novartis, Merck Serono, Genentech, Biogen, Teva Pharmaceuticals, Sanofi, Tilos Therapeutics, Tiziana Life Sciences, IM Therapeutics, vTv Therapeutics, MedDay Pharmaceuticals, Bayer, and Celgene.

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25Nov

Maryjuana and MS

Researchers Say Cannabis Can Benefit People with Multiple Sclerosis

After a review of scientific studies, researchers say extracts from marijuana plants can help treat pain and spasticity symptoms in people with multiple sclerosis.

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Gary Morrison | Getty Images

A systematic review recently presented at the Consortium of MS Centers in Tennessee has concluded that cannabinoids may have “modest effects in multiple sclerosis for pain or spasticity.”

Researchers looked at the safety and effectiveness of cannabis as well as studying its impact on disability and disability progression, pain, spasticity, bladder function, tremor/ataxia, quality of life, and adverse effects.

Five reviews concluded that there was sufficient evidence that cannabinoids may be beneficial for symptoms of pain and spasticity in multiple sclerosis (MS).

The review suggested future research include studies with noncannabinoid comparisons, noting an important gap in the studies.

The cannabis plant contains many biologically active chemicals, including about 60 cannabinoids.

Cannabidiol (CBD) and Δ9-tetrahydrocannabinol (THC) are the two main chemical components of cannabis.

Studies have shown that CBD has a number of beneficial pharmacological effects. It’s anti-inflammatory, antioxidative, antiemetic, antipsychotic, and neuroprotective.

Cannabis is legal in 30 states for the use of specific medical conditions — including MS. Sixteen more states have passed laws that specifically allow the medical use of CBD.

A recent peer-reviewed article looked at the effects of CBD on those with MS.

Researchers concluded that supplementing with CBD may help people with MS reduce fatigue, pain, and spasticity as well as eventually improve mobility.

Furthermore, the article suggests that a higher social acceptance of CBD will lead to increases in the number of people with MS using cannabis to treat their symptoms.

MS patients trying cannabis

In a web-based survey, hosted by the National Multiple Sclerosis Society, 66 percent of people with MS said they currently use cannabis for symptom treatment.

The Rocky Mountain MS Center at the University of Colorado recently published the preliminary results from its 25-person study evaluating use of cannabis.

Patients were asked to complete questions assessing willingness to use cannabis in MS treatment, previous and current use, impact of cannabis on MS symptoms, MS history, and demographics.

The preliminary results showed that slightly more than half of the respondents believe cannabis has some benefit on MS symptoms.

About 76 percent of respondents indicated they would consider trying cannabis to manage their MS symptoms.

And 28 percent reported cannabis use in the past year.

Cannabis products were mostly used for pain, spasticity/muscle tightness, and muscle spasms. The most common side effect listed was slower cognitive processes.

The most common objections to using medical marijuana included limited scientific proof, uncertainty of legal status, social stigma, potential addiction problems, and negative psychoactive effects of cannabis.

How marijuana helps MS patients

Another study from the University of Rochester MS Center in New York looked at the “real world” experience of medical marijuana in managing symptoms of multiple sclerosis and transverse myelitis.

Researchers conducted a cross sectional study, asking subjects to complete a survey reporting their experience with medical marijuana certification, usage, and effects.

About 77 percent said medical marijuana was helpful in managing symptoms, mainly spasticity and pain. They reported no side effects.

Another 70 percent felt their quality of life improved with medical marijuana. Some patients actually reduced other medications used for symptoms.

Most of the participants said they spent $100 to $300 per month on medical marijuana.

The Rochester study concluded that medical marijuana appears to have a role in managing the symptoms of MS through direct symptom relief and reduction in other medications. It also suggests that improving affordability may enhance patient benefit.

In Italy, researchers recently concluded that a cannabis-based spray, Sativex, is beneficial in reducing pain in patients with multiple sclerosis. During their study involving about two dozen patients, the researchers also found the spray improved pain sensitivity caused by cold temperatures.

Risks vs. benefits

Kathy Costello, a nurse practitioner at the Johns Hopkins Multiple Sclerosis Center in Maryland and the associate vice president of healthcare access for the National Multiple Sclerosis Society, does have some cautions for MS patients using medical marijuana.

“There are potential benefits, but they must be presented with their fair risks. People must make the most informed decisions and choices taking this into consideration,” Costello told Healthline. “It’s very important to note the risks as well as the potential benefits. There are risks involved. It is not studied like other medicines.”

Dr. Barbara Giesser, professor of clinical neurology at the David Geffen School of Medicine at the University of California Los Angeles (UCLA) and clinical director of the UCLA MS program, told Healthline that, “Cannabis and cannabinoid derivatives may be useful for some MS symptoms, but standard pharmacologic agents are available for the symptoms that have been shown to be responsive to cannabis, and are more standardized in terms of efficacy, potency, and pharmacology.”

However, Carolyn Kaufman, an MS advocate who’s lived with the disease since her diagnosis in 2009, says medical marijuana has made all the difference for her.

“With MS, there’s only so much you can do for pain,” Kaufman told Healthline. “It comes from exposed nerves that block signals from your brain and spine to your body to tell it how to work.”

“I had severe excruciating pain from muscle spasms, but the muscles themselves aren’t to blame,” she said. “It’s coming from damage on my spine and the muscle relaxers and pain pills go right to the muscle itself. Cannabis reduces inflammation, slowing down the disease activity and calming your entire system. It truly saved my life when my doctor ran out of answers. My miracle plant.”

It was the side effects and lack of effectiveness from the medications that led Kaufman to try medical marijuana.

“The medications weren’t helping with the pain at all, just making me high so then I was high and in pain,” she explained. “The side effects of the medications were mostly psychological — a lot of depression, apathy, mood swings, and exhaustion.”

Kaufman, who provides coaching services for MS patients, has lost 150 pounds during her journey. Her story is told via her blog at Withouttheweight.com.

“When the pain was severe, cannabis was my gift from the earth,” she said. “It worked when nothing else would. After never smoking before, I used cannabis to come off of all of my symptom management medications.”

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30May

Multiple Sclerosis -- the cause.

Looking at the cause of MS

My personal journey with MS


Like many people who get MS, I began experiencing unexplainable and terrifying symptoms such as tingling throughout my body, extreme weakness, paralysis, chronic fatigue, double vision, depression, inability to concentrate, and many others.

After forty years of these symptoms I've come to accept the unexpected. But I still want to know what was the cause of my MS..

One of the good things about having MS is that it has compelled me to ask some very fundamental questions. Questions such as: What is the purpose of my life? Why does illness and MS exist? And the most important one: Why did I get MS?

I learned that the human body is the most complex and wonderful creation in the Universe, and within it is an energy source. This energy source not only gives us form, and defines our unique character and personality, but life and meaning as well … let’s call it the Life Force. One aspect of the Life Force is its ability to disturb normal bodily functions after being overcome by extreme stress or a traumatic episode. It seems to me that MS could be caused, or at least worsened by, a disruption of my Life Force.  I know such an experience happened to me when I was eighteen years old. Two years later my first MS symptoms appeared.

When the body is overcome by extreme stress or a traumatic episode our Life Force can be disrupted, resulting in the disturbance of normal bodily functions. 

I believe there are multiple factors involved in causing MS, including genetic makeup and susceptibility; our geographic location, both today and where we grew up; the introduction of a pathogen, (possibly a virus, bacteria, etc.); and our environment (stress level, pollution, food, lifestyle, etc.). These all combine in such a way that our Life Force is compromised and we develop Multiple Sclerosis.

I also believe that by addressing these factors we can help to stop, or even reverse the onslaught of Multiple Sclerosis.


Managing MS – A Holistic Approach

Humans are the most complex and wonderful creations in the Universe and are comprised of a three-fold constitution:

The Body

Our physical body is an exquisite assemblage of living organ systems functioning together as a true miracle. For doctors and materialists, the body is viewed as merely a biochemical machine of carbon, calcium and other materials, made up of two-thirds water, and needing to be fixed when it breaks down.

We believe the body is much more than just a physical structure. It is a direct expression and extension of the Spirit and Mind. Not having the challenge of MS would certainly allow us an easier life, but believe it or not, it is our choice to have an ill or physically challenged body. Multiple Sclerosis is an opportunity to achieve maximum growth, and is a gift enabling us to realize our true divinity!

The Mind
Many think that the brain is the mind, but this is incorrect. The brain is a physical object that can be seen with the eyes, photographed, or operated on in surgery. The mind, on the other hand, is not a physical object. It cannot be seen, nor photographed, or repaired by surgery. We tend to think that the brain is the seat of the mind while in fact our consciousness and mind can be found throughout our body. The mind operates through the means of consciousness and is the way in which the Spirit, the Body and the world are linked.

The Spirit
The human spirit is the essence of every individual. It is the inner Source responsible for our existence. Only the physical body becomes old and feeble. The spirit remains forever young. Old age, infancy and youth, sickness and health, sorrows, joys, grief, and problems, are all things that pass, as do all external conditions and experiences of the world.


If we recognize the existence of our own spirit, old age, sorrow and suffering do not throw us into a state of fear, worry, or grief. If we can take a larger, holistic view of reality then the problems of life are manageable and we can realize our true selves.
 


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