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MS News Notes: Sexual Dysfunction, Bladder Problems, AI, and More

Welcome to “MS News Notes,” where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening

A medication that may ease sexual problems for women with MS

Sexual dysfunction is common among people with MS, affecting up to 80% of women and 90% of men. But an antidepressant pill that’s been around since 1985 may be able to help. As MS News Today‘s Lindsey Shapiro reports in “Antidepressant Bupropion Found to Ease Sexual Dysfunction in MS,” bupropion — marketed as Wellbutrin and Zyban, among others — may increase the levels of two brain molecules that involve sexual desire, arousal, and orgasm. Unfortunately, guys, this study only involved women.

Some help for men with bladder frequency and urgency

Most of us with MS have bladders that frequently “gotta go, gotta go.” Now, a small study reports that combining pelvic exercises with posterior tibial nerve stimulation (PTNS) could help. PTNS is a procedure that delivers electrical stimulation to the bladder through nerves in the leg. This stimulation may help to relax the muscles around the bladder, thereby easing the urgency and frequency that can be a bother. Marisa Wexler provides details in the MS News Today article “Electrical Stimulation Helps With Bladder Control in MS, Study Finds.” Unfortunately, ladies, this study only involved men.

Alcohol may interfere with Tecfidera treatments

Here’s a word of caution for people with MS being treated with Tecfidera (dimethyl fumarate) and who like to drink alcohol. A recent study discussed in the MS News Today story “Alcohol May Interfere With Tecfidera Metabolism, Study Finds” warns that consuming alcohol around dosing time could limit Tecfidera’s effectiveness. Specifically, the results from lab work and mice showed that alcohol inhibited the creation of a small molecule that drives Tecfidera’s therapeutic effects. It was completely absent in the blood and brain tissue of the test mice that had been given alcohol.

Researchers recommended that “alcohol consumption be avoided in close temporal proximity to dosing with [dimethyl fumarate].” They didn’t indicate how much time people should wait between consuming alcohol and taking Tecfidera, nor how much alcohol might affect treatment. But considering that the medication is taken twice a week, it could be difficult to avoid close temporal proximity. The next step is to test alcohol’s effect on Tecfidera in humans, the researchers said.

Researchers think this software could speed an MS diagnosis

Software that can detect abnormalities just five minutes after scanning MRIs will soon be available in Europe, its creators say. The tool uses artificial intelligence to assess the images and pinpoint, quantify, and monitor abnormalities. Specifically, the software can provide quantified information about lesions and other forms of brain damage, as well as data on brain volume loss. It is currently being used to help doctors diagnose strokes. MS News Today‘s Mary Chapman has the details in her story “Pixyl, Brainomix Partner on MRI Software to Help in Diagnosis of MS.”

Originally published by Multiple Sclerosis News Today

by Ed Tobias

 

DHS Announces Extension of REAL ID Full Enforcement Deadline

WASHINGTON – Today, the Department of Homeland Security (DHS) announced its intent to extend the REAL ID full enforcement date by 24 months, from May 3, 2023 to May 7, 2025. Under the new regulations published to execute this change, states will now have additional time to ensure their residents have driver’s licenses and identification cards that meet the security standards established by the REAL ID Act. As required by the law, following the enforcement deadline, federal agencies, including the Transportation Security Administration (TSA), will be prohibited from accepting driver’s licenses and identification cards that do not meet these federal standards.

“DHS continues to work closely with U.S. states, the District of Columbia, and the U.S. territories to meet REAL ID requirements,” said Secretary of Homeland Security Alejandro N. Mayorkas. “This extension will give states needed time to ensure their residents can obtain a REAL ID-compliant license or identification card. DHS will also use this time to implement innovations to make the process more efficient and accessible. We will continue to ensure that the American public can travel safely.”

The extension is necessary, in part, to address the lingering impacts of the COVID-19 pandemic on the ability to obtain a REAL ID driver’s license or identification card. REAL ID progress over the past two years has been significantly hindered by state driver’s licensing agencies having to work through the backlogs created by the pandemic. Many of these agencies took various steps in response to the pandemic including automatically extending the expiration dates of driver’s licenses and identification cards and shifting operations to appointment only.

Passed by Congress in 2005 following a 9/11 Commission recommendation, the REAL ID Act establishes minimum security standards for state-issued driver’s licenses and identification cards. Security standards include incorporating anti-counterfeiting technology, preventing insider fraud, and using documentary evidence and record checks to ensure a person is who they claim to be. Under the new regulations, beginning May 7, 2025, every traveler 18 years of age or older will need a REAL ID-compliant driver’s license or identification card, state-issued enhanced driver’s license, or another TSA-acceptable form of identification at airport 1security checkpoints for domestic air travel.

Since enactment of the REAL ID Act in 2005, advancements in technology have enabled TSA to make significant improvements in checkpoint screening, particularly in the areas of identity management, on-person screening, accessible property screening and alarm resolution. Through the deployment of technologies such as Advanced Imaging Technology (AIT), Advanced Technology (AT) X-ray, then Computed Tomography (CT), Bottled Liquids Scanners (BLS), and Credential Authentication Technology (CAT), as well as deployment of Passenger Screening Canines (PSC) and the rollout of TSA PreCheck®, TSA has continually advanced its security capabilities. TSA also increased its vetting capability through Secure Flight, a risk-based passenger prescreening program that enhances security by identifying low and high-risk passengers before they arrive at the airport by matching their names against trusted traveler lists and watchlists. REAL ID requirements will strengthen these improvements further by providing an additional layer of confidence in the identity of the traveler.

All 50 U.S. states, the District of Columbia, and four of five U.S. territories covered by the REAL ID Act and related regulations are issuing REAL ID-compliant driver’s licenses and identification cards. These standards have significantly improved the reliability and accuracy of state-issued driver’s licenses and identification cards.

For more information on REAL ID, visit www.dhs.gov/real-id.

National Press Release
Monday, December 5, 2022

 

Dietary Changes Can Help Ease Fatigue, Improve Quality of Life

Dietary interventions may help ease fatigue and improve quality of life in people with multiple sclerosis(MS), although it doesn’t seem to impact disability progression, according to a new analysis

Researchers emphasized that it’s difficult to draw solid conclusions about the impact of diet in MS because there haven’t been many well-controlled studies, underscoring the need for further investigation.

“It is difficult to reach a sufficient level of evidence in dietary studies, to make recommendations,” they wrote. “These meta-analyses … support the association of dietary interventions with a tendency to reduce fatigue and an increase in [quality of life] among MS patients.”

The study, “Efficacy of diet on fatigue, quality of life and disability status in multiple sclerosis patients: rapid review and meta-analysis of randomized controlled trials,” was published in BMC Neurology.

Although a number of dietary interventions have been proposed for MS, there is no solid scientific evidence to support any particular dietary strategy for patients. It’s generally recommended that people with MS eat a diet similar to what’s recommended for the general population, with lots of fruits, vegetables, whole grains, and lean proteins.

Researchers in Spain analyzed randomized-controlled trials (RCTs) that assessed diet in MS. RCTs are studies where human participants are randomly assigned to multiple groups. For example, an active treatment group and a placebo group. In a meta-analysis, scientists pool data from multiple studies and analyze it together, which provides greater statistical power to detect significant effects.

These meta-analyses included data for 515 people with MS from eight RCTs. In all these studies, participants were assigned either to a dietary intervention or to a comparison intervention.

A number of different dietary interventions were used across the studies, which generally were not blinded, meaning participants and investigators knew which group they were in. This increases the risk of bias influencing the results.

The researchers emphasized that their meta-analyses were limited by the low number of studies and by variations across them regarding factors such as patients’ clinical characteristics. They said more research on this topic was needed.

“New systematic reviews and clinical trials (randomized parallel-arm clinical trial) are underway that will help in the selection of appropriate diets,” they noted.

Among the eight RCTs, three trials including 308 patients tested the effect of dietary intervention on fatigue, a common MS symptom, as measured with the Modified Fatigue Impact Scale (MFIS). The analysis showed dietary intervention significantly reduced MFIS scores, indicating a marked easing of fatigue.

Physical and mental quality of life, as measured by the Multiple Sclerosis Quality of Life (MSQOL) scale, also showed significant improvements after dietary intervention in an analysis that included two studies and 77 patients.

Six studies that included 337 patients assessed the effect of dietary intervention on disability, as measured with the expanded disability status scale (EDSS). There was no significant effect of dietary intervention on EDSS, the analysis showed, suggesting diet has no impact on disability progression.

“The accumulated evidence from these meta-analyses is not sufficient to support that disease-associated disability, as measured by EDSS, is modified by dietary changes. However, different variables associated with quality of life and fatigue did show improvement after dietary intervention in people with MS,” the researchers said, noting no severe safety problems related to dietary intervention were reported in any studies.

Originally posted in Multiple Sclerosis News Today

by Marisa Wexler, MS

 

Climate Change Risk to MS Patients: Worse Symptoms, More Relapses

Temperature variability and increasing exposure to airborne pollutants — both consequences of climate change — can worsen disease symptoms and risk relapses in people with multiple sclerosis(MS), according to a recent review study.

Unwanted effects of environmental change were also linked to a number of other neurological conditions, including stroke, dementia, migraine, and Parkinson’s disease.

“Climate change poses many challenges for humanity, some of which are not well-studied,” Andrew Dhawan, MD, PhD, a neurology resident at the Cleveland Clinic in Ohio and the study’s senior author, said in an American Academy of Neurology press release.

“More studies are needed on ways to reduce neuroinfectious disease transmission, how air pollution affects the nervous system, and how to improve delivery of neurologic care in the face of climate-related disruptions,” Dhawan added.

Review of 364 studies into temperature, disease and pollution changes since 1990

The study, “Impacts of Climate Change and Air Pollution on Neurologic Health, Disease, and Practice: A Scoping Review,” was recently published in the journal Neurology.

With each passing year, global temperatures continue to rise, leading to weather extremes like floods and wildfires, poorer air quality, and expanded geographical regions and seasons in which infectious diseases thrive.

Scientists warn that climate change can also affect human health in ways that include greater food and water insecurity, and a higher risk of respiratory illness and infectious disease.

While links between environmental conditions and respiratory and cardiac diseases are well studied, less is known about the effects of climate change on the prevalence and severity of neurological diseases like MS. The researchers noted that, as the planet continues to warm, this will become an increasingly important question.

“As we witness the effects of a warming planet on human health, it is imperative that neurologists anticipate how the epidemiology and incidence of neurologic disease may change,” the researchers wrote.

The scientists conducted a systematic review of studies published between 1990 and 2022 that were related to climate change, pollution, and neurological diseases in adults.

They identified 364 studies, which were grouped into three major themes: extreme weather events and temperature fluctuation (38 articles), emerging neuroinfectious diseases (37 articles), and impact of pollutants (289 studies).

Climate change and disease relapse risk

Temperature fluctuations and extreme weather events were associated with changes in a number of neurological conditions, including symptoms for MS patients. They were also linked to migraine headaches, hospitalizations in dementia patients, and the incidence and severity of stroke.

Likewise, airborne pollutant exposure, or poorer air quality, associated with an increased risk of an MS relapse. This was particularly true for a type of pollutant called fine particulate matter (PM2.5) — particles less than 2.5 micrometers in diameter and carried in smoke, soot, aerosols, mould, dander, and the like — and nitrates.

Exposure to these pollutants also linked with stroke incidence and severity, headaches, dementia risk, and Parkinson’s.

Warming global temperatures were seen to favor the spread of tick- and mosquito-borne neuroinfectious diseases like the West Nile virus, meningococcal meningitis, and tick-borne encephalitis.

Findings overall highlight a growing impact of climate change on neurologic health.

The researchers noted, however, that the studies were conducted largely in resource-rich geographical areas. Findings might differ in areas with fewer resources, where the effects of climate change on human health may be even more pronounced, they wrote.

Based on their findings, the researchers noted three priorities for future research: mitigating the spread of neuroinfectious disease, understanding how airborne pollutants affect the nervous system, and improving neurological care within a changing environment.

Potential impacts of climate change that weren’t evaluated in the study also warrant investigation, the researchers noted.

“Our review did not find any articles related to effects on neurologic health from food and water insecurity, yet these are clearly linked to neurologic health and climate change,” Dhawan said.

In response to the rising global temperatures, more than 22o medical journals published a joint editorialin 2021 calling for “urgent, society-wide changes” that will prevent average global temperatures from rising by more than 1.5 degrees Celsius before 2100.

Such actions could help to slow environmental degradation and protect neurologic, and overall, human health.

Originally posted in Multiple Sclerosis News Today

by Lindsey Shapiro, PhD

 

Red Wine and MS: Potential Benefits and Risks

Red wine is sometimes called a “superfood” because of its antioxidants — substances that help protect against some types of cell damage. But there’s debate about how much red wine is beneficial and whether certain people would be better off avoiding it.

Those living with chronic conditions such as multiple sclerosis (MS) may wonder how alcohol consumption will affect their symptoms and if the perceived health halo around red wine applies to MS. Although no two people with MS are exactly the same, here’s what researchers studying MS and individuals living with the condition have reported.

Findings on MS and Red Wine

Unfortunately, there’s limited research examining red wine’s protective effects on humans with MS. The most relevant study was published in 2017 in the journal Multiple Sclerosis and Related Disorders. Researchers analyzed data from 923 people with MS, finding that participants who drank more than three glasses of red wine a week had lower disability and disease severity scores than nondrinkers. However, those who drank up to three glasses of red wine a week seemed to accumulate brain lesions faster than abstainers.

The results of this study show the potential benefits and risks of red wine, suggesting that red wine may protect against neurological disability but could encourage MS progression in other ways. Certain aspects of red wine may be beneficial, but others may be harmful.

For example, the alcohol in red wine can temporarily impair balance and coordination. Drinking red wine may also increase the urge to urinate and raise the risk of additional health conditions like breast cancer.

Resveratrol is a flavonoid or polyphenol (plant compound) often credited for the health benefits of red wine. Although a 2013 study advised caution against resveratrol for MS, later research showed that it may improve healing of myelin, a fatty tissue that insulates nerve fibers. Other flavonoids are otherwise known for having anti-inflammatory properties and for helping to limit demyelination (damage to and destruction of myelin). Results of other studies have also demonstrated flavonoids’ benefits on the course of MS.

Other Potential Effects of Alcohol on MS

Alcohol’s effect on multiple sclerosis is not fully understood, but most studies suggest that low to moderate alcohol intake helps slow the progression of MS. Researchers attribute this potential benefit to alcohol’s anti-inflammatory effects on the immune system.

That’s not to say consuming red wine will make life with MS better. Common MS symptoms such as blood glucose fluctuations, numbness and tingling, and facial flushing may worsen after a glass of wine or two. Chronic, long-term drinking can produce a condition called alcoholic neuropathy, which damages the peripheral nerves and causes issues like muscle spasms, abnormal gait, and speech difficulties. Because many of these side effects overlap with the symptoms of MS, it’s crucial for people with MS to seek treatment if excessive alcohol use becomes a habit.

What Others Are Saying

Many people with multiple sclerosis are apprehensive about drinking red wine, including one MyMSTeam member who said, “I haven’t had red wine in years and may try a glass sometime to see if it’s different. But I am not sure I want to risk it. Life is challenging enough, and there are too many other things to do without having any extra issues.”

Several members have said alcoholic drinks like red wine seem to hit them harder than before MS — “one drink feels like five.” Others have noted that bladder issues and incontinence deter them from having a drink.

On the other hand, some people with MS continue to drink wine without adverse effects or are not dissuaded by temporary effects: “I drink moderately (more than three drinks per week), usually red wine or hard cider. Neither the cider nor the wine seems to affect me at all — well, maybe they mellow me out a bit, but that’s it. I feel very lucky to have no adverse reaction to moderate alcohol consumption!”

Another member said, “I have one glass of red wine each evening with my meal at home. And yes, it does affect my walking, but I’ve no intention of giving it up unless my doctor advises. It’s one of the joys of life that hasn’t been taken away. The effects only last for about an hour.”

Although most health experts probably wouldn’t advise someone who doesn’t drink to start drinking, it’s possible that red wine and other alcoholic beverages can remain part of your life with MS. Paying attention to how you feel and making an effort to balance red wine with plenty of water can help you figure out if the occasional glass of red wine is worth having.

Adjusting to Life With MS

For many people, red wine is about more than health effects. If you were a wine connoisseur before your diagnosis, giving it up might seem like a big loss. Perhaps you associate a glass of red wine with memories of winery trips or holiday gatherings. You may feel like red wine is a must for certain meals or occasions.

One member candidly shared their viewpoint: “I love wine because I live alone and usually drink with other people. Therefore, it brings me a sense of joy and emotional comfort. I have a lot of anger at MS, and wine calms me down a bit, and I don’t hurt as much.”

They explained how they balance their drinking: “I’ve found that moderation is key, especially since I’m either tired at the end of day or dehydrated. I put iced tea or Crystal Light in a fancy wine bottle, and it helps … I still enjoy wine but try to sip slower, enjoy more when I drink, and aim for a level that works best, like one or two drinks with friends and food.”

Multiple sclerosis places many challenges on daily life, so discovering creative ways to include things you love is an essential part of living well with the disease.

However, if you find red wine is negatively affecting your symptoms or causing your health to decline, you may need to find a healthier substitute or get support to develop new coping skills. Struggling with alcohol isn’t an uncommon problem, and your health care provider can point you in the right direction to get help. You can also call the Substance Abuse and Mental Health Services Administration at 800-662-4357 for confidential and free assistance.

Article written by:
Anastasia Climan, RDN, CDN

Article originally published by:
mymsteam.com

Chronic Itching May Be Overlooked in MS, Says New Study: Some Treatments May Help

Researchers at the University of Miami found that 27 of 77 people with MS reported experiencing chronic itching (also known as pruritus). Itching occurred in the upper and lower limbs and hands, scalp, and face. Compared to people with MS without chronic itching, people with it reported more fatigue, heat sensitivity, cognitive impairment, and depression or anxiety. They also were more likely to have nervous tissue damage in the spinal cord or brainstem (the base of the brain).
Some Treatments Help: Importantly, note the authors, chronic itching in MS is most likely “neuropathic” – meaning it is likely occurring from “short-circuiting” of the nerves that carry signals from the brain to the body because of damage from MS. For this reason, topical itch relief, such as skin creams, are not likely to help. But this type of chronic itch is similar to neuropathic pain, and may respond to nonpharmacologic (acupuncture, mindfulness and meditation, cognitive behavioral therapy) or pharmacologic (anti-seizure medications, anti-depressant medications) treatments. Heat was noted as an aggravating factor in this study, so wrapped ice packs might help as well.

Read more here about this study from the University of Miami 

Published by MS Views and News

 

Milk May Exacerbate MS Symptoms

The prompt for the study came from MS patients: “We hear again and again from sufferers that they feel worse when they consume milk, cottage cheese or yogurt,” explains Stefanie Kürten from the Institute of Anatomy at University Hospital Bonn. “We are interested in the cause of this correlation.”

The professor of neuroanatomy is an expert on multiple sclerosis. She began the study in 2018 at the University of Erlangen-Nuremberg. A year and a half ago, she moved to Bonn, where she continued the work together with her research group. “We injected mice with different proteins from cow’s milk,” she says. “We wanted to find out if there was a constituent that they were responding to with symptoms of disease.”

And the researchers did indeed find what they were looking for: When they administered the cow’s milk constituent casein together with an effect enhancer to the animals, the mice went on to develop neurological disorders. Electron microscopy showed damage to the insulating layer around the nerve fibers, the myelin. The fat-like substance prevents short circuits and additionally significantly accelerates stimulus conduction.

Perforated myelin layer

In multiple sclerosis, the body’s immune system destroys the myelin sheath. The consequences range from paresthesia and vision problems to movement disorders. In extreme cases, patients need a wheelchair. The insulating sheath was also massively perforated in the mice — apparently triggered by casein administration. “We suspected that the reason was a misdirected immune response, similar to that seen in MS patients,” explains Rittika Chunder, who is a postdoctoral fellow in Prof. Kürten’s research group. “The body’s defenses actually attack the casein, but in the process they also destroy proteins involved in the formation of myelin.”

Such cross-reactivity can occur when two molecules are very similar, at least in parts. The immune system then in a sense mistakes them for each other. “We compared casein to different molecules that are important for myelin production,” Chunder says. “In the process, we came across a protein called MAG. It looks markedly similar to casein in some respects — so much so that antibodies to casein were also active against MAG in the lab animals.”

This means that in the casein-treated mice, the body’s own defenses were also directed against MAG, destabilizing the myelin. But to what extent can the results be transferred to people with MS? To answer this question, the researchers added casein antibodies from mice to human brain tissue. These did indeed accumulate in the cells responsible for myelin production in the brain.

Self-test for antibodies against casein

Certain white blood cells, the B cells, are responsible for antibody production. The study found that the B cells in the blood of people with MS respond particularly strongly to casein. Presumably, the affected individuals developed an allergy to casein at some point as a result of consuming milk. Now, as soon as they consume fresh dairy products, the immune system produces masses of casein antibodies. Due to cross-reactivity with MAG, these also damage the myelin sheath around the nerve fibers.

However, this only affects MS patients who are allergic to cow’s milk casein. “We are currently developing a self-test with which affected individuals can check whether they carry corresponding antibodies,” says Kürten, who is also a member of the Cluster of Excellence ImmunoSensation2. “At least this subgroup should refrain from consuming milk, yogurt, or cottage cheese.”

It is possible that cow’s milk also increases the risk of developing MS in healthy individuals. Because casein can also trigger allergies in them — which is probably not even that rare. Once such an immune response exists, cross-reactivity with myelin can in theory occur. However, this does not mean that hypersensitivity to casein necessarily leads to the development of multiple sclerosis, the professor emphasizes. This would presumably require other risk factors. This connection is nevertheless worrying, Kürten says: “Studies indicate that MS rates are elevated in populations where a lot of cow’s milk is consumed.”

 

Dr. Cramer and Dr. Quarles To No Longer Accept United Healthcare Beginning May 2023

As of May 13, 2023, Dr. Cramer and Dr. Quarles will no longer be participating with United Healthcare insurance. “We have worked hard to avoid this transition for a long time, and we are very sorry that we will not be able to work with our wonderful patients with United Healthcare insurance well into the future.” Options for patients will be to switch to a participating neurologist or be a self-pay patient and pay a cash price for appointments. Keep in mind, it is possible that as non-participating neurologists, the doctors may not be able to prior authorize MRIs, tests or medications if a patient decides to stay and be out of network. Please let Dr. Cramer and Dr. Quarles know if you will need to transition to a new neurologist and they will be happy to work with you and forward your records.

Annual Open Enrollment Period starts October 15th

Annual Open Enrollment Period starts October 15th and ends December 7th. Changing insurance is not simple, it takes having professional help. Ronna Narotsky of Active Medicare Solutions spoke to our MSAV Online Support Group Meeting Tuesday, October 11 and answered our questions about insurance. For anyone who would like to reach out to her for a free review of their personal insurance needs, she can be contacted at:

Ronna Narotsky

Active Medicare Solutions

Cell Phone: 650-340-8909

Email: ronna@activemedicaresolutions.com

For those in the Henrico County area of Virginia, Active Medicare Solutions will be conducting a Medicare Fair this Saturday, 11057 Three Chopt Road next to The Grapevine Resaurant at the corner of Cox and Church.

Stem Cell Transplant in MS: Patients Support, but Neurologists Hesitant

People who underwent a hematopoietic stem cell transplant (HSCT), many of them patients with multiple sclerosis (MS), were supportive of the treatment despite its high costs — and hesitancy and opposition from their neurologists — a survey study showed

Most surveyed HSCT recipients — about 85% — believed their symptoms were better controlled after the stem cell transplant, and those with MS saw an overall reduction in disability.

However, more than half of the transplant recipients’ neurologists did not support the procedure, and more than 30% did not continue patient care post-treatment, the survey found.

“Our findings indicate that patients are prepared to travel and invest considerable amounts of time and money in HSCT,” the researchers wrote, adding that their study “provides stimulus for large randomized controlled trials” into the use of the experimental treatment.

The study, “A global online study of haematopoietic stem cell transplantation in multiple sclerosis and other neurodegenerative disorders,” was published in Chronic Diseases and Translational Medicine.

HSCT is being explored as a way to help “reset” the body’s dysfunctional immune system in various disease states. The approach takes advantage of the capacity for blood stem cells to self-renew and produce virtually any blood cell type in the body.

Basically, the treatment involves collecting blood stem cells from a patient and then wiping out the person’s immune system using chemotherapy and/or radiation. The blood stem cells are then transplanted back into the patient so they can repopulate the immune system with healthy cells.

Surveying transplant recipients

Stem cell-based therapies are gaining traction for the treatment of MS and other immune conditions, but many clinicians do not support the procedure.

HSCT is not approved for MS in the U.S., where it is considered an experimental treatment, but the procedure is supported by the National MS Society for patients with very active disease who haven’t responded well to other disease-modifying treatments.

The number of HSCTs performed is increasing every year, the researchers noted. While some evidence suggests that it can reduce disability and relapse rates in MS patients, concerns about the true efficacy of the procedure — especially given its high cost and potential risks — remain.

Now, a team of researchers in Australia set out to better understand the use of HSCT around the world, creating a survey aimed at people who had undergone such a transplant.

The internet-based survey was administered via Facebook and included 21 questions designed to understand the demographics of patients undergoing HSCT, treatment protocols, and the degree of treatment success.

Overall, 223 survey respondents underwent HSCT, most of whom were female (73.5%) and with a household income of more than $50,000 (78.9%). About two-thirds were from Australia or the U.S.; the remaining participants were from Western Europe, Canada, and South Africa.

A majority of participants (94.6%) had MS, and one person had clinically isolated syndrome(CIS). The other respondents had chronic inflammatory demyelinating polyneuropathy, Stiff Person’s syndrome, scleroderma, polyneuropathy, organomegaly, endocrinopathy, myeloma protein syndrome, or neuromyelitis optica spectrum disorder.

Most had their HSCT treatment in Russia (38.7%) and Western Europe (26.7%), with the remaining having been treated in Australia (5%), India (4.5%), and Canada (0.5%).

The treatment costs ranged from less than $15,000 to more than $150,000, with almost half of patients spending somewhere between $50,000 and $75,000. Additional costs, including travel, accommodation, and meals, totaled an average of $13,800 per patient.

More than half of the patients’ neurologists (54.5%) did not support them seeking HSCT treatment. But 65.5% of patients received care from the same neurologist after the procedure.

After treatment, patients saw five types of medical specialists — neurologists, hematologists, general practitioners, rheumatologists, and physiotherapists. A total of 83.3% of patients were satisfied with their post-transplant care.

Most people who had HSCT (85.5%) either agreed or strongly agreed that the treatment was successful in managing disease symptoms, with symptom improvements seen from immediately to a few years after the procedure. The percentage of participants who would recommend the treatment to other people was 95.4%.

For the 197 MS patients who underwent a stem cell transplant, scores on the Expanded Disability Status Scale (EDSS) — a measure of disease progression — were significantly reduced after HSCT. Those scores dropped by an average of 1.2 points, reflecting an overall lessening in disability with the transplant.

In total, 130 patients saw EDSS improvements, 50 experienced no change, and 17 patients had an EDSS worsening.

Overall, the findings show that “patients are overwhelmingly supportive of the treatment despite the costs,” but that “HSCT is still facing opposition from neurologists and other specialists, some of whom refuse to treat their patients following treatment,” the team wrote.

“Greater research is needed in this area to elucidate the effectiveness and timing to establish it as a proven therapy,” they added.

Written by:  Lindsey Shapiro, PhD

Originally published by:  Multiple Sclerosis News Today

 

Review Showcases Inconsistencies in MS Auditory, Vestibular Research

Abnormalities in the auditory and vestibular systems, which control hearing and balance, are frequently reported among people with multiple sclerosis (MS), a new study found

However, there is a substantial amount of variability in scientific studies that assess these abnormalities, making it difficult to draw an overarching conclusion about how these systems are typically affected.

“This systematic review clearly demonstrates that both peripheral and central audio-vestibular functions may be affected by [MS lesions] and by the MS inflammatory process. This suggests that a comprehensive audio-vestibular test battery should be incorporated in the assessment protocols of [people with] MS,” researchers wrote.

The review paper, “Effects of multiple sclerosis on the audio-vestibular system: a systematic review,” was recently published in BMJ Open.

In MS, inflammation in the central nervous system causes damage to nerve fibers, interfering with normal neurological signaling. Depending on which parts of the nervous system are affected, this can give rise to a wide range of disease symptoms.

Three scientists in the U.K. reviewed scientific studies published from 2000 to 2021 in order to assess how MS tends to affect the auditory and vestibular systems.

“Literature needs to be combined and summarised to better understand the potential effects of MS on the auditory and/or vestibular systems. If auditory and/or vestibular disorders in [people with] MS are better understood, early identification and early intervention could occur, resulting in improved quality of life,” the researchers wrote.

Their review included 35 studies: 14 assessed only the auditory system, 18 only the vestibular system, and three evaluated both.

Across the 17 studies that assessed the auditory system, over half a dozen different assessments were used to evaluate auditory involvement. For some specific assessments, there were generally consistent trends — in particular, 12 out of 13 studies that assessed auditory brainstem responses (ABR) showed significant abnormalities for people with MS. The researchers suggested that ABR should be included in auditory test batteries for MS.

For most other auditory assessments, however, the results were less clear, with some studies showing differences among MS patients, while others revealed no difference. The wide variation in study designs and assessment strategies made it impossible to draw reliable conclusions from the available data.

“The specific effects of MS on the auditory system, based on the results of auditory tests included in this systematic review, could not be established,” the scientists concluded.

Results for the vestibular system were generally more consistent. Nearly all the studies found vestibular abnormalities of some kind in MS patients, suggesting “that the vestibular system may be more affected by MS than the auditory system,” the researchers said.

Again however, there was substantial variation from study to study in terms of design and the tests used to assess vestibular impairment, making it difficult to draw generalized conclusions and underscoring a need for further, more uniform research, the scientists said.

“Although abnormal results in [people with] MS on both auditory and vestibular tests were identified, further studies are necessary to quantify this effect and obtain more robust evidence on the effects of MS on the auditory and vestibular systems,” they concluded.

Written by: Marisa Wexler, MS

Originally published by: Multiple Sclerosis News Today

 

 

Brian Mason Respite Camp 2022

The Brian Mason Respite Camp is an annual event for people whose lives have been severely affected by Multiple Sclerosis, the newly diagnosed and the caregiver/immediate family member living in the home who does not get the opportunity to vacation. It is a chance to meet others living with MS and/or give family members a break. This year was so much fun and we’d like to thank Brian Mason and The Mason Family Trust for making our dreams a reality. Our gratitude also goes to our pharmaceutical sponsors BIOGEN, BRISTOL MYERS SQUIBB, GENENTECH, Clinica Ruiz and Sanofi Genzyme.

My MS Makes Getting Sick With a Viral Infection 10 Times Worse

School started last week for our three kids. They got to see friends from the last school year, meet their new teachers, and sit at a new desk in their new classrooms. Per tradition, there was no homework assigned the first week, but they still brought home plenty of papers for us to sign and return. Also per tradition, they brought home a lovely upper respiratory virus.

Starting last Thursday evening, it made its rounds through our family of five, hitting me sometime Saturday night. As far as illnesses go, it’s been fairly mild, and everybody seems to have weathered it well and shaken it in about 24 hours — everybody but me, that is, because multiple sclerosis (MS) just can’t seem to leave well enough alone.

Sometime late Saturday night, I woke with a chill, wrapped myself tightly in bedcovers, and drifted into a dream. I don’t really have lucid dreams where I’m in control of the action, but I’m often aware that I’m dreaming. At one point in my dream, I was having a bit of a foggy, uncoordinated moment and told myself, “You’re acting like you do when you have a fever.” Turns out my subconscious is pretty smart.

I awoke Sunday morning to a low-grade fever, which in my pre-MS life I may not have even bothered taking anything for. Unfortunately, with MS and the Uhthoff’s syndrome that often accompanies it, even a half-degree rise in body temperature demands my undivided attention. It’s as though multiple sclerosis is a magnifying glass for illness.

Spasticity, previously under control, returns to what feels like pre-baclofen pump levels. Legs are stiffened out straight, arms feel like they’re moving in Jell-O, and hands feel like someone is curling all of the fingers while holding the fists tightly closed. Diplopia, or double vision, is constant rather than occurring only with fatigue. Speaking of which, MS fatigue and its companion, brain fog, which are normally difficult to describe, seem to be made 10 times worse by a febrile illness.

Multiple sclerosis makes a mockery of spontaneity in everyday life, but it eliminates any hope of sickness spontaneity. (I may have just invented a new term.) By that, I mean that in the years before MS, I would’ve awakened sick and perhaps decided to stay in bed, but still would have staggered to the medicine cabinet, the bathroom, or the kitchen as needed. I would have reacted to the symptoms on my own timeline instead of being forced by MS to act with an immediacy bordering on foresight.

Once the fever is under control, I’m functional but exhausted, so barely functional. Even in this improved state, I doubt I could manage without help. If I didn’t have my wife to take care of me, the only way I could conceivably take care of myself would be to somehow see an illness coming and pre-stage all my needs or keep an emergency supply by the bed. Not exactly spontaneous.

I know it sounds like I’m complaining — and I am — but this isn’t the “him-fluenza,” the “bro-chitis,” or even the “dude-onic plague.” I don’t have a clever MS specific name for this yet. If you do, please share it in the comments below.

The cruel synergy between MS and being sick may not have an official (or unofficial) name, but those of us who experience it know it well and have every right to complain.

by Benjamin Hofmeister |

Originally published by Multiple Sclerosis News Today

 

MS Patients with Social Support Slept Better During Pandemic: Study

Leisure activities, daily help linked to better sleep amid COVID-19 isolation

Greater feelings of social support predicted better sleep quality in people with multiple sclerosis (MS) during the COVID-19 pandemic, a study shows.

Specifically, greater help with daily tasks and more leisure activities with others were the types of social support identified, after adjusting for potential influencing factors, as predicting better sleep in this patient population.

“I think this study shows that we really need to make more time and space for social interactions, because they have such an impact on our sleep quality,” Taylor Harris, a doctoral student at the University of Kansas and the study’s first author, said in a university press release.

“This is especially true for people with MS who may face additional hurdles for social interactions amid a global pandemic,” Harris added.

The study, “Social support predicts sleep quality in people with multiple sclerosis during the COVID-19 pandemic,” was published in the journal Multiple Sclerosis and Related Disorders.

Poor sleep quality is a prominent symptom of MS, affecting up to 70% of patients. This can have a significant influence on other MS symptoms, cognitive function, mental health, and quality of life.

Social support, or the experience of being cared for emotionally and physically by another person, has been shown to improve mental health and sleep quality in the general population.

However, measures such as stay-at-home orders and social distancing aimed at preventing the spread of COVID-19 have markedly restricted social activities and in-person contact throughout the pandemic.

Connection between social support and better sleep

Now, Harris and colleagues at the University of Kansas and the University of Kansas Medical Center wondered whether such changes in social interaction influenced sleep quality in MS patients.

“People with MS have additional needs, and the pandemic affected social life for all of us,” Harris said, adding, “We were curious to assess if their social interactions had an impact on their sleep.”

The team surveyed 163 adults with MS from February to May 2021 about their sleep quality and social support during the pandemic. Most participants were female (70.6%) and had relapsing-remitting MS (79.8%), generally characterized by periods of relapses, followed by periods of remissions.

More than two-thirds (67%) were considered poor sleepers, scoring above a 5 in the Pittsburgh Sleep Quality Index (PSQI) questionnaire. On this assessment, scores range from 0 to 21, with higher values indicating worse sleep quality.

Social support was assessed with the patient-reported MS Social Support (MSSS) questionnaire. It covers four areas or domains: emotional/informational support, including emotional and conversational intimacy; affectionate support, covering physical touch and expression; tangible support, related to help with daily tasks; and positive social interaction support, which includes leisure activities with others.

Results showed that patient-reported social support was a significant predictor of the PSQI scores, “with higher feelings of being socially supported associated with better sleep quality,” the researchers wrote.

For the study, the team took into account potential influencing factors such as age, education level, disability status, and anxiety and depression. After adjusting for those factors, two types of social support — help with daily tasks, and leisure activities with others — remained significant predictors of better sleep quality.

No significant links were detected for emotional and conversational intimacy or physical touch and expression.

While anxiety and depression levels were found to be significant predictors of sleep quality, consistent with previous studies, the researchers here found that these factors do not weaken the link between social support and sleep quality.

Indeed, according to Harris, these findings demonstrate that “social support can really serve as that protective factor,” highlighting the “importance of what types of support we can form socially.”

The researchers acknowledged that the COVID-19 pandemic was adding a new level of challenge for MS patients and caregivers in managing daily activities, including sleep, and disease symptoms. They encouraged patients to expand their MS toolbox.

“While engaging in these types of activities could be challenging amid an infection disease outbreak, current technologies allow us to safety interact with others virtually,” the team wrote.

“Coordinating online game nights or hosting group video streaming events are just a few of the many ways to promote positive social interactions while practicing social distancing,” they added.

Given that better sleep quality is linked to improved physical health and cognitive function, “preserving and promoting sleep in this population is crucial,” the researchers wrote.

The team noted that future studies should aim to examine the effects of social interaction on sleep over the long term, and accounting for other factors, like social class, economic status, and cultural identity — which may affect the link between social support and sleep.

By Lindsey Shapiro, PhD 

Originally published by Multiple Sclerosis News Today

Can MS, Medical Marijuana, and Guns Safely Coexist?

U.S. federal law prevents medical marijuana users from owning guns

It seems to me from my anecdotal observations that a fair number of people living with multiple sclerosis (MS) have a gun. When I wrote about the issue a few years ago, I discovered that more people than I expected had both a gun and MS. Additionally, many people with MS use some form of medical marijuana. So should a person using medical marijuana be allowed to have a gun?

U.S. federal law prohibits anyone who unlawfully uses a controlled substance from possessing a firearm or ammunition. Even though many states have legalized the use of marijuana for medical and recreational purposes, in the eyes of the federal government, anyone using marijuana, even medically, is an unlawful user of a controlled substance.

A few years ago, the Bureau of Alcohol, Tobacco, Firearms, and Explosives (ATF) even added a warning about this on Form 4473, which must be filled out when purchasing a gun from a dealer. It reads: “Warning: The use or possession of marijuana remains unlawful under Federal law regardless of whether it has been legalized or decriminalized for medicinal or recreational purposes in the state where you reside.”

Under federal law, you can’t have a gun and possess marijuana.

Florida is suing to change this

This issue recently was raised in Florida. The Florida Department of Agriculture and Consumer Services, which issues concealed weapons permits, is challenging the federal rules on gun ownership and marijuana use. The department filed a lawsuit last spring arguing that the rules “forbid Floridians from possessing or purchasing a firearm on the sole basis that they are state-law-abiding medical marijuana patients,” CBS Miami reported.

The lawsuit includes plaintiffs who are medical marijuana patients and want to own guns, along with a plaintiff who is a gun owner and wants to participate in Florida’s medical marijuana program.
Will Hall, a lawyer representing the plaintiffs, told The News Service of Florida that the regulation prohibiting medical marijuana users from owning guns makes people “less safe” by forcing people to purchase guns privately rather than from a store that follows ATF protocols.

An informal survey taken by an online MS group about five years ago indicated that most people with MS are interested in using medical marijuana, and many of them, including me, have tried it. I’m concerned about mixing medical marijuana and guns. I’ve never owned a gun, but over the years, I’ve fired rifles and handguns. My belief is that if the THC/CBD blend in the cannabis products I was using was strong enough to ease my symptoms, then I was “stoned” and would be totally unable to accurately — or responsibly — fire a weapon.

By Ed Tobias

Originally published by Multiple Sclerosis News Today

No MRI Change but Worsening MS Symptoms

You’ve just had your yearly MRI and there have been no changes, no new or larger lesions; however, you know your condition has worsened since your previous exam.

Understanding worsening MS symptoms but no MRI change

What’s going on? How is that possible? These are common questions and it’s a scenario that many people with multiple sclerosis go through at some point in their life with the disease. While the MRI is a key diagnostic tool for diagnosis and monitoring MS progression, it does not always paint an accurate picture of what’s going on. So let’s talk about some reasons your condition is worsening but your MRI isn’t showing it.

Flares can be deceiving

A key fact about MS that a lot of people don’t seem to understand is that the disease causes damage that cannot be undone. The term “relapsing-remitting” often gives people the impression that they will have an exacerbation (aka relapse, aka flare-up) but then return to normal when it’s over. That may often appear to be the case, as inflammation does go down, but irreversible damage has still been done.

The disease caused your immune system to attack and eat away at the lining around your nerves (myelin) which interrupts the way the brain communicates with the rest of your body. The immune system conducts this attack by using inflammation.1

Consider previous damage

When an exacerbation is over, the signals may again cross along the damaged nerves with no issue (which will look like everything is back to normal), or they may not. One reason for that is that the inflammation (which also slows these signals) that came along with the exacerbation is now gone.1

The brain is also very good at working around damaged areas, re-routing signals to use the best path, which is another reason people may seem like they’ve fully recovered. Those damaged areas are still there though, so you may feel like your symptoms are worsening, but there will be no new change on your MRI because it is really just previous damage that is rearing its ugly head.

There is such thing as silent progression

There are many folks with MS that don’t have a lot of noticeable relapses but over a long period of time end up incurring significant levels of disability. This can happen so gradually that the patient may not even notice it at first. This is often referred to as “silent progression” and isn’t marked by noticeable relapses and lesions on an MRI.2

Instead of the inflammation that comes with a relapse, it’s thought that the real culprit here is actually brain atrophy. Silent progression is something that is normally noticed in those that have previously been diagnosed with relapsing-remitting MS. Another term you may hear for this is “PIRA”, which stands for progression independent of relapse activity. This type of slow, not always noticeable, progression is something a lot of folks don’t think about. There is a tendency to be wary of relapse-type events when there are other ways this disease can affect you.3

Other MRI considerations

If you are still having noticeable issues and your MRI looks normal, you should always ensure that your MRIs are of both your brain and your spine, no matter what your previous history has been. You may have only had lesions in the brain in the past, but suddenly one is in your spine.

Also, make sure the person reading your MRI is experienced enough to know what to look for. My point here is simply to never become complacent in your care. A doctor who may have been skilled enough in your first few years may no longer be able to help you now. Never feel bad about seeking another opinion and advocating for yourself.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

By

Originally published by: MultipleSclerosis.net

 

Newly Diagnosed With MS: 12 Questions to Ask Your Doctor

Each day, at least 300 individuals are diagnosed with multiple sclerosis, and it’s thought to affect some 2.8 million people globally.

Learning you have multiple sclerosis (MS) can be shocking and confusing. You know you need more information — a lot of it — but you aren’t sure where to start or what questions to ask.

Asking your healthcare provider the right questions can be a good first step toward successfully navigating your new life with MS.

“[Doctors] become a character in each patient’s story, and we will impact how that story unfolds from that moment. This is a responsibility, but also a privilege and an opportunity,” said Annie Brewster, MD, a practicing internist at Massachusetts General Hospital in Boston who also has MS. “I now clearly understand that a doctor’s job is not simply to diagnose and ‘manage’ diseases, but rather to partner with patients in the ongoing journey of navigating illness.”

While the disease course is different for each person, here is a guide that can help you cut through the fog and get to the heart of your MS diagnosis.

1. Do you specialize in MS?

Neurologists are qualified to make an MS diagnosis; however, not all neurologists specialize in MS.

Ed Tobias, a Multiple Sclerosis News Today columnist and forum moderator, said it is important for MS patients to have an MS specialist.

“In my experience in dealing with other people with MS, I hear all the time that general neurologists just don’t understand the disease and that you’ll get a much better result if you go to a specialist,” said Tobias, 73, a retired Florida resident who was diagnosed with relapsing-remitting MS in 1980, which has since transitioned to secondary progressive MS. “It’s hard to find them, especially outside of metropolitan areas, and that’s a problem.”

Desiree Lama, a community collaborator for Multiple Sclerosis News Today, was in her senior year of high school when she was diagnosed in 2016 with relapsing-remitting MS. “When I was diagnosed, we were looking for a specialist because I got referred to a neurologist who didn’t really tell me anything,” said Lama, 23, of Texas. “He was, like, ‘Go and research MS and come back.’ And I was confused because I was young and really didn’t know what it was.”

Although her family “lucked out” and found a specialist, Lama said that what is most important is that the neurologist has experience with MS diagnoses.

Allen Bowling, MD, PhD, is an internationally recognized neurologist and integrative medicine pioneer with more than three decades of clinical and research experience. He has devoted his career to the care and treatment of people with MS.

He said that while the question about MS specialty is “good,” especially for those who live in rural areas, the fact is most MS patients are cared for by a general neurologist. “If it’s a three-hour drive, I’m not sure a patient needs to see a specialist on an ongoing basis,” said Bowling, who leads the NeuroHealth Institute in Englewood, Colorado, and is a clinical professor of neurology at the University of Colorado.

Your primary care provider may be able to provide you with a referral to an MS specialist. Ultimately, your neurologist should be someone who has the expertise to help you manage and treat your disease, communicates well, and makes you feel comfortable and heard.

2. What type of MS do I have?

MS is broadly classified into four main types based on disease progression: clinically isolated syndrome, relapsing-remitting, secondary progressive, and primary progressive. Knowing which form of MS you have can help you understand your specific symptoms and treatment options.

It’s appropriate to ask your neurologist whether they are “confident” you have a certain MS type, Bowling said. However, if there is any murkiness about your diagnosis, ask how certain they are that you even have MS. If there is uncertainty, you should consider getting a second opinion.

3. What do my MRI results mean?

Magnetic resonance imaging, or MRI, is used to help diagnose MS and to monitor and track the disease’s progression, which can aid in making treatment decisions.

MS is characterized by brain lesions, which are areas in the central nervous system that have been damaged due to MS attacks. On MRI scans, they show up as spots. Neurologists can analyze specific MRI scans to determine the number of lesions, their size and shape, and whether they are active or inactive.

MRIs can also be used to measure the degree and rate of brain volume loss in MS patients, which can help predict disease course and progression. Evidence shows that brain volume loss in MS appears to correlate with long-term physical and cognitive disability.

Rates of brain volume loss can also aid in making treatment decisions. In fact, one of the goals of several disease-modifying therapies is to slow down brain volume loss or brain atrophy.

Understanding your MRI results is important. Your neurologist should take the time to explain your MRI reports and what they mean for you as the patient.

“Someone could ask, ‘How many lesions do I have, and can I look at my MRI?’ That might make things more real to them,” Bowling said. “If someone is told they have five lesions and they can see these five small spots, that can be sort of reassuring. Or if the doctor says you have 20 lesions that are quite large and we need to push hard on treatment, viewing the MRI can back that up.”

Arelis Castillo, 30, is a community collaborator for Multiple Sclerosis News Today. A Connecticut resident, Castillo was diagnosed with relapsing-remitting MS in 2018. She said that, following her MS diagnosis, it was important to her to understand the information she had come across while doing her own research about the disease.

“I went to my doctor and said, ‘Explain lesions, where they are, and how they’re going to affect me.’ It’s highly important just to understand it,” she said.

Bowling said patients should be mindful, however, that MRI results are limited in terms of what they might mean for them in their daily lives. Symptoms may progress without the appearance of new lesions; conversely, new lesions don’t always correlate with new symptoms.

“There isn’t a real great correlation between results and quality of life,” he said.

4. How does an MS diagnosis affect my quality of life?

After being diagnosed with a chronic disease like MS, it’s natural to have questions about your prognosis and how the disease will affect your daily life. While the answer to this question will differ depending on the individual circumstances, your neurologist should be able to help you come to terms with your diagnosis and provide some guidance on managing your MS on a day-to-day basis.

As a progressive disease, MS leads to increasing disability over time, be it physical and/or in terms of cognition. It is estimate that more than half of MS patients will experience cognitive problems — damage to the nervous system in MS can cause difficulty with thinking or reasoning, planning, problem-solving, and learning.

“When I got the diagnosis, I went home and had a panic attack,” said Multiple Sclerosis News Today community collaborator Rochelle Roberts, 24, who was diagnosed with relapsing-remitting MS in 2020. “I wasn’t asking clinical questions, I was asking quality-of-life questions like, am I going to have trouble walking all the time? Those were the things I wanted to know.”

Tobias said, “The most important question I asked when I was diagnosed was, is this going to shorten my life? When I heard, probably not by much, it was OK.”

5. What should I do if I think I’m having an exacerbation or experiencing a new symptom?

Also known as a relapse or flare-up, an exacerbation in MS is the occurrence of new symptoms or the worsening of existing symptoms. Because MS and its symptoms are so variable, it may be difficult to determine whether something you are experiencing is a result of your disease or something different.

“[This] question is a good way to get a read on a neurologist,” Bowling said. “If they hedge or don’t get back with me that day, that’s concerning.”

Open communication with your neurologist about anything new or different you are experiencing can help them determine if your disease is progressing or if you are having a relapse, as well as assist them in making treatment decisions.

Said Lama: “Whenever I think I’m experiencing something new, I’ll Google it to see if it’s something else or an MS symptom, and then I’ll reach out to my MS specialist, and if I feel like it’s completely necessary to go see her, I’ll schedule an appointment so we can talk about it.”

Keeping track of your symptoms may also help you and your neurologist identify any possible triggers that may cause an exacerbation. These can include stress, heat, smoking, fatigue, and infection, among others.

6. Will my MS continue to progress?

Multiple factors, including those genetic and environmental in nature, likely contribute to the development and progression of MS.

“As soon as I was diagnosed, I assumed it would progress,” Roberts said. “That’s the mindset I’m perversely preparing myself for. I think it’s a valid question, since everyone gets diagnosed at a different stage. It’s basically a ‘what’s next?’ question.”

Each patient journey is different, making it difficult to predict the course of the disease for each individual. Some patients may progress faster than others. MS risk factors that can affect the disease course include the disease type, treatment, lifestyle factors, and biological traits.

Bowling said it’s important that patients have realistic hope about their future. “Many physicians assume MS is a homogeneous disease, but it’s not,” he said. “And they’ll look at statistical averages for 500 people. But it’s unfair to patients to convey that.”

In that light, patients might want to ask their doctor how things look for them now in their MS course, Bowling said.

7. What are my treatment options, and which one is best for me?

With a number of approved MS-modifying medications now available, it’s the duty of the neurologist to narrow those options down to the two or three that are most reasonable for the patient, Bowling said.

Treatment plans should be discussed between healthcare providers and patients, and they should take into account the patient’s preferences, symptoms, their physical and cognitive function, and MS type, as well as clinical factors such as disease severity (how active it is), MRI data, and the rate and degree of brain volume loss.

“If only one option is presented, that’s concerning,” Bowling said, adding that patients should ask about potential side effects.

Castillo said, “These are valid questions about treatment because you really want to get on the right one, for whatever stage you start off with.”

When Roberts was diagnosed, her neurologist explained her disease stage and ultimately presented her with three MS treatment options, plus their top choice. They also delved into the efficacy, intensity, and possible side effects of each treatment. “It came down to, which one do you think is best, and what can I expect from it?” she said.

8. Does my insurance cover my MS treatments?

The financial issues that come with dealing with a chronic condition like MS can be just as stressful as the disease itself. It’s important to understand early on what your options are and the type of coverage your insurance provides for your treatments. Likewise, if you don’t have insurance, you should inquire about any alternatives that may be able to help you.

“I try to keep insurance out of it until we come up with the drug that seems like the best,” Bowling said. “Then we push as hard as we can on the insurance side.”

“MS is stressful, but having financial stress adds on to it. It’s just really important to have these questions answered so that people feel at ease and know they’re going to be getting the things they need for their health,” Castillo said.

9. What else can I do to manage my symptoms on a day-to-day basis?

In addition to medications, other strategies may help MS patients manage their symptoms and feel their best. Bowling refers to this as “integrative medicine,” a combination of conventional and non-pharmaceutical approaches and lifestyle practices such as diet, exercise, physical therapy, and coping strategies for stress, anxiety, and depression.

“I think much of the time spent in MS clinics is devoted to disease-modifying treatments, and very little time is spent on treating specific symptoms,” Bowling said. “So, it’s worth asking about medication and non-medication approaches to managing symptoms.”

“It’s a very important question,” Castillo said. “I always look at things as like a balance. I’m dealing with the [disease-modifying treatment] side of it, but what are other things you can do? Exercise, different workouts, meditation, yoga … it’s important to highlight these as well because that’s also dealing with symptoms.”

Brewster said, “In truth, making healthy lifestyle choices will improve life overall, not just MS.”

10. What specialists should I see to manage my disease and symptoms?

The National Multiple Sclerosis Society advises a comprehensive, coordinated care approach to managing MS. This often involves the expertise of different healthcare professionals besides neurologists — such as primary care physicians, urologists, rehabilitation therapists, and mental health providers.

While your neurologist may be the one who makes the treatment decisions, it’s important to understand how other healthcare providers and specialists may work together to ensure the best comprehensive management of your particular situation.

11. What do I do if I don’t feel my medication is working, or I can’t follow the regimen?

Because each patient will have a different disease experience, their treatment will also be unique. This is because the disorder can affect different parts of the central nervous system and cause a broad range of symptoms with varying severity. Also playing a role in this variability are the different types of MS.

MRI results may be used on an ongoing basis to determine whether or not the chosen therapy is effective. If brain volume loss progresses significantly, it could be an indicator the therapy is not working. Likewise, significant rates of decline in cognition or physical abilities may also be a determining factor in a therapy’s effectiveness.

Bowling said a more specific question could be, “How will I know if my medication is working or not?”

Patients may not be able to follow a treatment regimen for several reasons. For example, the method of administration — which can include injectables or oral medications — may no longer be tolerated. Or perhaps the side effects of a particular medication become unmanageable.

If you are having trouble adhering to your treatment for any reason, you should bring this issue to the attention of your neurologist for their guidance and recommendation.

12. Are there any clinical trials that may be an option for me?

Clinical trials are at the center of medical advances. The goal of these trials is to evaluate whether a device, procedure, or pharmaceutical therapy is safe and effective. Such studies also may assess new ways of using existing treatments, gauge other aspects of care, or simply record daily life with a condition over time.

People with the disease — in this case, MS — and healthy volunteers, known as controls, may be enrolled in clinical studies. All participants are monitored so that any issue or potential risk is identified as soon as possible. These trials are regulated by law and require federal approval before they start.

“People are hungry for clinical trials fairly early on, in the discussions I see,” said Tobias, who participated in one study early in his patient journey but didn’t receive an actual treatment candidate.

Bowling said, “Trials were a big deal 15 years ago when there weren’t so many drugs. Now, I think most people with MS will go to a trial and not be sure which treatment they’ll be on. But it’s rare that someone will risk knowing.”

Final words of wisdom

In all, the most important thing about doctor visits — early on and beyond — is that you feel comfortable, Brewster said.

“Trust your instincts,” she said. “You should feel respected, cared for, and attended to. If you feel otherwise, pay attention to this and consider finding a different provider. Doctors are busy, but you should not feel rushed or ignored. We all need to feel like our doctors are listening to us and taking us seriously.

“You deserve this.”

 

This article originally published by: Multiple Sclerosis News Today

Expanded Availability of At-home COVID-19 Tests for People Who Are Blind or Have Low Vision

Last month, the Biden-Harris Administration launched an initiative to expand the availability of at-home testing options that are more accessible for people who are blind or have low vision. The tests work with a Bluetooth-enabled smartphone app to provide users with audible instructions and test results. Read more about the tests.
Due to very limited supplies when the program began, each order included only two test kits. People were asked to order these tests only if they did not have options for using the traditional kits. Starting today, the program is expanding. People will now receive 12 test kits with each order. In addition, anyone who is blind or who has low vision is now encouraged to order the more-accessible tests.

If you placed an order before July 7 and received only two tests, you may place another order now to receive 12 additional tests. (Your name and shipping information are not retained after your order is filled, so there is no way to automatically ship additional tests.)

How to get the tests:
Order online or by calling 1-800-232-0233.

  • Each order now includes 12 rapid-antigen tests that are more accessible for people who are blind or have low vision. These will ship in six separate packages, each with two tests. Each package will have a separate tracking number.
  • Orders will ship free, while supplies last.

Need more assistance? 
The trained staff at the Disability Information and Access Line (DIAL) can provide additional assistance with:

  • Ordering tests.
  • Understanding instructions for test administration and test results.
  • Providing alternative instructions for traditional at-home tests for people who are unable to access, read, or understand the manufacturer’s version.
  • For those who cannot use an at-home test, DIAL operators can:
    • Assist with ordering “swab and send” kits to collect a sample and mail it back for results.
    • Connect callers to local organizations for assistance locating other testing options in their community, including in-home testing programs or transportation or companion support to visit a community-based testing site.

Call 888-677-1199 Monday-Friday from 9 a.m. to 8 p.m. (Eastern) or email DIAL@usaginganddisability.org.

Smoking Linked to Worse Outcomes in RRMS Patients After 10 Years

Smoking is associated with lower brain volume, more brain lesions, and greater disability and attention deficits among people with relapsing-remitting multiple sclerosis (RRMS) after 10 years, according to a study in Norway.

“The findings imply that patients should be advised and offered aid in smoking cessation shortly after diagnosis, to prevent long-term disability progression,” the researchers wrote.

The study, “The Effect of Smoking on Long-term Gray Matter Atrophy and Clinical Disability in Patients with Relapsing-Remitting Multiple Sclerosis,” was published in the journal Neurology: Neuroimmunology and Neuroinflammation.

Numerous studies have identified smoking as a risk factor for MS development and progression, linking smoking to a greater disability, a higher likelihood of developing a progressive disease course, greater relapse rates, more inflammatory brain lesions, and brain volume loss.

But not all studies have observed such associations, leaving the true relationship obscured.

To better understand the potential link, researchers evaluated the long-term effects of smoking in MS patients by assessing MRI data and clinical outcomes 10 years later. The analyses included a total of 85 RRMS patients who had participated in the two-year OFAMS Phase 2/3 clinical trial (NCT00360906).

At the trial’s start, all participants had signs of recent inflammatory disease activity and had not received any prior treatment. They were given the approved therapy Rebif (interferon-beta 1a) for the past 1.5 years of the two-year trial, after which they received routine treatment.

Ten years after the trial concluded, 85 of the 87 available participants returned for a follow-up visit.

During the trial, participants’ smoking status was evaluated in two ways: blood levels of cotinine — a byproduct of nicotine that reflects recent tobacco use — and retrospective patient self-reporting.

Since people exposed to smokeless tobacco (such as snuff) can have high cotinine levels, patients reporting the use of smokeless tobacco at the 10-year follow-up visit, but no smoking during that decade, were deemed nonsmokers.

In the self-reporting method, patients answered a questionnaire about habits of tobacco use 10 years after the completion of the OFAMS study. Those reporting regular smoking within the past 10 years were defined as smokers, while those not reporting regular smoking or reporting only snuff use were defined as nonsmokers.

“Samples available for cotinine analyses were missing for one patient, and another patient did not complete the questionnaire concerning tobacco use, leaving 84 patients to be classified as smoker or nonsmoker by each definition,” the researchers wrote.

Based on cotinine levels, 47 people were considered smokers and 37 were deemed nonsmokers during the initial trial. According to self-reporting at follow-up, 48 participants were regular smokers (47 of whom said they also smoked at the time of trial) and 36 were nonsmokers.

At the 10-year follow-up visit, the mean age of smokers, classified with either method, was 49.7 years and that of nonsmokers was 49.4 years.

Results showed that after 10 years, smokers had significantly lower volumes of white matter and deep gray matter and larger total lesion volumes, compared with nonsmokers — regardless of the method used to define smokers. The brain’s white matter mainly consists of nerve fibers, while gray matter is mainly made of nerve cells’ bodies.

These smokers also had worse walking ability, as assessed by the timed 25-foot walk test, and greater declines in attention scores, measured through the paced auditory serial addition test, since the end of the initial trial.

A final statistical analysis adjusted the results taking into account potential influencing factors, such as age, sex, cardiovascular risk factors, disability, and time from diagnosis.

Its results showed that cotinine-based smoking was associated significantly with lower white matter volume and higher brain lesion volumes after 10 years. Patient-reported smoking also was significantly linked to smaller white and gray matter volumes, as well as worse walking ability, and greater attention declines.

“These findings suggest that smoking has a negative long-term influence on prognosis and disease progression in patients with MS,” the researchers wrote.

Since attention is commonly affected by MS, and has been reported to be impaired in smoking non-MS populations, MS patients who smoke may be at a higher “risk of developing cognitive impairment, through mechanisms specific to both MS and smoking,” they added.

These patients “should be advised and offered aid in smoking cessation as early as possible in the disease course,” the researchers wrote.

Given that the study assessed only cotinine levels during the two-year trial, and imaging and clinical outcomes after 10 years, larger studies analyzing these outcomes over time are needed to better understand the effect of smoking duration and cessation in disease progression.

by Lindsey Shapiro, PhD 

This article originally released by: Multiple Sclerosis News Today

A New Gift Helps Me Stay Cool in the Summer Heat

OK, I know I look silly wearing this — maybe even scary — but the Father’s Day gift I received from my son and his family is really cool, especially for someone with multiple sclerosis.

Just in time for the hot days of summer, I now have a neck fan. At the touch of a button, three speeds of “ah” surround my neck and tickle my ears.

For people with MS, heat can cause symptoms to worsen, so finding ways to stay cool is important.

OK, I know I look silly wearing this — maybe even scary — but the Father’s Day gift I received from my son and his family is really cool, especially for someone with multiple sclerosis.

Just in time for the hot days of summer, I now have a neck fan. At the touch of a button, three speeds of “ah” surround my neck and tickle my ears.

For people with MS, heat can cause symptoms to worsen, so finding ways to stay cool is important.

The device is similar to others on the market, and they all work basically the same. A pair of fans rest on my shoulders and suck in air that is then blown out and up through slits in a headphone-like band around my neck. The air isn’t cooled, but even when the outside air is warm, it feels cool. The air band is charged with a computer USB port or a wall wart power supply, like the ones used with a smartphone.

These powered cooling bands cost about $50, but you don’t need to have something this expensive to cool you down.

Cooling Bandannas

For as little as $3, you can go online and find a colorful cloth bandanna to tie around your neck or forehead. Some people even wrap them around their wrists or ankles. Before going out, soak the bandanna in water, which will be absorbed by gel inside it. The bandannas cool well, but only for a short period. Some advertisements claim they can last up to four hours, but I tried one years ago and had to soak it again after about an hour.

Cooling Vests

Cooling vests generally have pockets with ice packs that keep you cool. One study showed that wearing one of these vests can help to improve your walking speed and distance when it’s hot.

You can buy these vests online, but if your income is below a certain level, the Multiple Sclerosis Association of America will send you one for free.

Keeping cool — or at least cooler — during exercise is good, but some research shows that cooling down before exercise also helps. In one study, people with MS who cooled down before a workout appeared to have better use of their arms and legs while exercising, and they were able to exercise longer.

Of course, jumping in a swimming pool to cool down is also good. I love swimming and aquatic exercises. Some are specifically designed for people with MS.

So chill as best you can when the heat is high. There are plenty of ways to do it, in addition to a cooling fan.

by Ed Tobias 

This article originally released by: Multiple Sclerosis News Today