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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Friday, September 21, 2018

What Do We Know About Pediatric MS?

Prevalence

Although MS occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000-10,000 children (up to 18 years old) in the United States have MS, and another 10,000-15,000 have experienced at least one symptom suggestive of MS. Studies suggest that two to five percent of all people with MS have a history of symptom onset before age 18.

Diagnosis & symptoms

Diagnosing MS in children is more challenging than in adults due to the frequency of other childhood disorders with similar symptoms and characteristics. Pediatricians may not be familiar with MS because they are not expecting to see it in children. Children with MS benefit from comprehensive carethrough multidisciplinary teams that include pediatric and adult MS experts.

Once diagnosed, almost all children are considered to have relapsing-remitting MS, with most symptoms of MS similar to those seen in adults. There are, however, symptoms experienced by children that are not typical in adults, such as seizures and mental status changes (lethargy).
  • Children often experience more frequent relapses than adults with early MS.
  • Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.
In children and adolescents MS may affect academic performance, family relations, and can further complicate typical issues like self-image and relationships with peers. An evaluation by a trained professional can help determine appropriate interventions, and resources are  available to help you navigate the school system through the Pediatric MS Support Group.

Treating pediatric MS

In 2018 the U.S. Food and Drug Administration approved the expansion of the use of the oral MS therapy Gilenya® (fingolimod, Novartis AG) to include the treatment of children and adolescents 10 years of age or older with relapsing MS.  In addition, many of the disease modifying therapies that are FDA approved for adults are also prescribed off-label for pediatric MS.

Other oral therapies for MS, including dimethyl fumarate (Tecfidera®) and teriflunomide (Aubagio®), are currently under study in clinical trials for the treatment of pediatric MS.  An observational study of natalizumab showed that the safety and efficacy in children were similar to that in the adult MS population.  Smaller retrospective studies, case studies and unblinded controlled trials have demonstrated safety and efficacy of the self-injected MS disease modifying therapies.

In addition to the FDA approved therapies used for pediatrics, another treatment, that is not FDA approved for MS, known as rituximab (Rituxan®), has been studied in small trials of pediatric patients and showed that it was safe and effective.

Ultimately, starting or switching a disease modifying therapy in children and adolescents requires that the provider, child and family have an in-depth discussion. This discussion should include the goals and expectations of the child and family, how the drug is expected to control the MS, the side effects, the risks and any monitoring (blood tests, MRI and other tests) after the therapy is started. In this way, providers, patients and families can participate in a shared decision-making process to determine the therapy that best meets individual needs.

The International Pediatric MS Study Group has written a series of articles, highlighting the advances, unanswered questions and challenges in diagnosing and treating MS in children. These articles have been published in a supplement to the journal Neurology. A publication from the Multiple Sclerosis International Federation (MSIF) summarizes the key points from each of these articles.

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Thursday, September 20, 2018

Trial of fingolimod vs interferon beta-1a in pediatric multiple sclerosis

New England Journal of Medicine — Chitnis T, et al. | September 14, 2018

In this phase 3 trial, researchers compared fingolimod with interferon beta-1a in patients younger than 18 years of age with multiple sclerosis. Compared to interferon beta-1a, fingolimod had a lower rate of relapse and less accumulation of lesions on magnetic resonance imaging (MRI) over a 2-year period but was related to a higher rate of serious adverse events (infection, leukopenia) among pediatric patients with relapsing multiple sclerosis.

Methods

  • For this investigation, researchers randomly assigned subjects 10 to 17 years of age with relapsing multiple sclerosis in a 1:1 ratio to receive oral fingolimod at a dose of 0.5 mg per day (0.25 mg per day for patients with a body weight of ≤40 kg) or intramuscular interferon beta-1a at a dose of 30 μg per week for up to 2 years.
  • The annualized relapse rate was the primary end point.

Results

  • According to the findings obtained, out of 215 patients, 107 were assigned to fingolimod and 108 to interferon beta-1a; 15.3 years was the mean age of the patients.
  • It was observed that there was a mean of 2.4 relapses during the preceding 2 years among all patients.
  • Findings revealed that the adjusted annualized relapse rate was 0.12 with fingolimod and 0.67 with interferon beta-1a (absolute difference, 0.55 relapses; relative difference, 82%; P < 0.001).
  • Researchers found that the key secondary end point of the annualized rate of new or newly enlarged lesions on T2-weighted magnetic resonance imaging (MRI) was 4.39 with fingolimod and 9.27 with interferon beta-1a (absolute difference, 4.88 lesions; relative difference, 53%; P < 0.001).
  • Excluding relapses of multiple sclerosis, adverse events occurred in 88.8% of patients who received fingolimod and 95.3% of those who received interferon beta-1a.
  • They observed that serious adverse events occurred in 18 subjects (16.8%) in the fingolimod group and included infection (in 4 patients) and leukopenia (in 2 patients); convulsions were noted in six patients.
  • They discovered that serious adverse events occurred in 7 subjects (6.5%) in the interferon beta-1a group and included infection (in 2 patients) and supraventricular tachycardia (in 1 patient).
Read the full article on New England Journal of Medicine





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Tuesday, September 18, 2018

This Is What Excites Me About Remyelination Therapy Research

SEPTEMBER 17, 2018 -- BY DEBI WILSON

This Is What Excites Me About Remyelination Therapy Research


Remyelination therapies are on the horizon as an innovative multiple sclerosis (MS) treatment, according to my neurologist. These therapies have been on my radar the last few years, but to hear my neurologist say they could soon be a reality makes me hopeful of the possibilities.

To offer a clear description of what remyelination therapies are and what they mean for those of us with MS, I first need to explain what MS is.

MS is a relentlessly devastating immune-mediated disorder of the central nervous system. In MS, the body turns on itself. It attacks and damages the myelin sheath, which covers axons, or long, threadlike nerves of the central nervous system. The result of these attacks is damage and exposure of the myelin and the axons. This invasion leaves behind a disrupted connection between the brain and the spinal cord.
The disconnection creates an array of varied debilitating and painful symptoms. What symptoms occur depends on where the damage is located on the spine and the brain. The cause of MS is unknown, although many theories exist. No cure has been discovered yet.
The hope for remyelination is that through drug therapy, myelin and axons can be repaired and replenished where damage has occurred. This treatment could greatly impact those with MS. If we were able to regain even a small portion of what we have lost, it would be life-changing!
A study abstract published in Nature Reviews Drug Discovery, titled “Remyelination therapies: a new direction and challenge in multiple sclerosis,” states that current therapies for MS are “predominantly immune-modulating and do not directly promote repair.” It adds: “White matter regeneration, or remyelination, is a new and exciting potential approach to treating multiple sclerosis, as remyelination repairs the damaged regions of the central nervous system.”
Continue Reading

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What Triggers Your Sensory Overload?

Stu's Views ---   DANG - do I surely know of this issue...  

a Healthline.com EMPOWERING article
“Noise in closed areas, such as parties, classrooms, malls, stores, etc. As long as I can leave the environment, I will be OK.” — Esther D., living with MS
“Noise! I can feel like my head is collapsing.” — Rhonda L., living with MS
“Noise of any sort. My cat meowing at me can freak me out at times." — Amy M., living with MS

ms voices


“The common one is when the work environment gets loud and busy, but the newest, and one that seems the strangest, is any warehouse type store. The extremely tall and long aisles, even when they're practically empty.” — Amy L., living with MS
“Large crowds. Bright big stores. Sometimes I go to the store, walk in, say ‘nope,’ and go home.” — Bonnie W., living with MS
“The grocery store and heavy traffic. Makes me feel scatterbrained and ‘lost.’” — Amber A., living with MS
ms voices

Unfamiliar spaces

“An environment I'm not used to, physically and/or mentally. Still don't know how to deal with them.” — Rona M., living with MS
“Being away from home too long. I get very anxious.” — Sherri H., living with MS

Fatigue

“Being tired can trigger it, real bright lights, a lot of motion, lights, noise at the same time, trying to listen and talk in a setting with other input.” — Kelly H., living with MS
“Fatigue is probably the number one cause of my sensory overload, but it's not always the culprit. If there are too many noises at once, they all seem to be competing to be the loudest, resulting in complete overload. In turn, I become a complete wreck. Tremors, feeling extremely uneasy, and anxious. All this holds true with an overload of any other sensual stimulus or combination of sensory overload events.” — Gail F., living with MS
“Someone who sits next to me and talks nonstop, especially in the late afternoon when extra fatigued, or just loud people with lots of energy … I'm like chocolate on a hot pavement … I melt down to a mess.” — Lisa F., living with MS

Restaurants

“In restaurants, I request not to be seated directly under a speaker. Music, combined with people's voices and kitchen clatter, drives me crazy.” — Connie R., living with MS
“Dinner at Texas Roadhouse with all the birthdays and singing and celebrations. Just gets to be too much!” — Judy C., living with MS
ms voices
“Noise coming from multiple directions and high-pitched sounds like the clanking of dishes and silverware together, or children screeching. Restaurants with high ceilings and open kitchens are the worst for me because every sound just feels multiplied.” — Erin H., living with MS

Crowds

“Being in a crowd or a loud room where I'm unable to tune some of the noise out. Hustling and bustling crowds are the worst between the sounds, the people, and my balance issues.” — Cindi P., living with MS
“Too many voices at once.”— Robin G., living with MS

Too many things to count

“Bright lights, too loud, children screeching, hot with odd smells, some industrial sounds, sometimes even reading can be too much if the lights are wrong or the setting is overwhelming.” — Alysin P., living with MS
“Going to the grocery store, being tired, the doctors telling me too much all at once, restaurants, people who don’t control their screaming, running kids.” — Stacy N., living with MS
“Large stores with a lot of color and visual stimulation; flashing or strobe lights especially in the dark; too much, too loud, or specific types of noise such as screeching or sirens; crowds or fast-paced and bustling activity.” — Polly P., living with MS
SOURCE: HEALTHLINE 


The Adverse Effects of 'Invisible Symptoms'

Which MS Symptoms Give People the Most Problems?

Researchers say “invisible symptoms” that aren’t necessarily associated with multiple sclerosis can actually be affecting quality of life the most.
The symptoms commonly associated with multiple sclerosis-related disabilities are not necessarily the ones causing the most problems.
Researchers in Switzerland recently took a thorough look at which symptoms people with multiple sclerosis (MS) complain about the most and concluded that “invisible symptoms” can have a big impact on quality of life.
They also found that the type of MS and course of the disease play a role in how different symptoms affect quality of life.
The research looked at 855 people in the Swiss Multiple Sclerosis Registry. Of them, 611 patients had relapsing-remitting MS (RRMS) and 244 had progressive MS (PMS).
The registry is funded by the Swiss Multiple Sclerosis Society and operated by the University of Zurich. This new study was one of the first projects using this registry database.
The paper concluded that patients with RRMS reported gait and balance problems along with depression and fatigue as major factors affecting quality of life.
Those living with PMS reported paralysis, spasticity, weakness, and pain as those most affecting quality of life.

And while some symptoms may occur more frequently, it’s the other, less frequent symptoms that may cause more problems.

Continue reading

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Monday, September 17, 2018

5 ways to minimize MS flares from Burning You Out

Sometimes it’s hard to handle a daily routine when living with multiple sclerosis (MS). MS can cause a wide range of symptoms, including:
  • fatigue
  • depression
  • anxiety
  • paralysis
  • blindness
  • trouble breathing
Even simple tasks like chopping vegetables or combing hair can be discouraging on bad days. When symptoms of MS get worse, they are called flares or exacerbations in the medical community.
Because of the physical side effects of the disease, people living with MS are forced to become some of the most creative and clever individuals around. They must come up with new ways to adapt their lives to the challenges. In addition to taking precautions and prescribed medications from your doctor, here are a few other things you can do to try and minimize the occurrence and impact of MS flares.

1. Say YES to less stress

reduce stress
We all know this can be easier said than done, but decreasing everyday stress as much as possible needs to be a priority for anyone with MS. Daily stressors can be challenging enough, and larger, troubling life events can make MS flares worse. If you anticipate going through something stressful in the near future, prepare accordingly. Whether this means speaking with a therapist or setting aside time to Zen out, remember that investing in stress reduction is worthwhile. The negative effects of stress can be as powerful as the beneficial effects of your MS drugs!
READ balance of this article from Healthline.com


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Trusting Your Neurologist When You Have Multiple Sclerosis

When it comes to multiple sclerosis (MS) treatment, you may have a team of doctors and specialists. However, your neurologist is considered the main person to go to for direct MS treatment. This is due to the fact that MS is a neurological disorder.
Still, simply having MS and seeing a neurologist for diagnosis and treatment doesn’t always transition into automatic trust. Even if you were referred to a specific neurologist by your primary doctor, you might not fully trust them just yet. Here are eight tips to help you build the trusting relationship you need with your neurologist.

1) Ask as many questions as you can

Visits with your neurologist are your chance to ask all the questions you need answered about your condition and treatment plan. Sometimes seeing a specialist can be overwhelming, especially if it’s your first visit.
It may be helpful to write down your questions ahead of time so that you don’t forget to ask them. You’ll likely be surprised at how willing your neurologist is to take the time to answer these questions.

2. Express your expectations about honesty

The fact is that doctors of all specialties work with patients of varying personalities. If they don’t know you well yet, they might not want to appear as being blunt with you. It’s perfectly acceptable to state right away that you want full honesty at all times. This can open up the conversation even further so that your neurologist can share information with you without worrying about being too blunt.
Click here to continue reading


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