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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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Saturday, May 23, 2020

Having MS does not make you Immune Compromised -- The Use however of certain Disease Modifying Therapies (DMT's), Can or Will make you Immunocomprised..

COVID-19 is unprecedented and a rapidly changing situation.
Get the latest public health information from CDC: https://www.coronavirus.gov 
Stay Healthy, Stay Home and Wash Your Hands


(PLEASE read ALL showing below, 
INCLUDING the list of medications that CAN or WILL Compromise your Immune System)

People with MS have asked for guidance on the use of disease modifying therapies (DMTs) during the COVID-19 pandemic. DMT decision making varies significantly from country to country, ranging from highly provider-directed to a collaborative decision-making model.
The National MS Society's National Medical Advisory Committee believes DMT decisions should be individualized and made collaboratively between the person with MS and his/her healthcare provider. Based on their expert advice, the Society recommends: 
  • People with MS should follow CDC guidelines and additional recommendations for people at risk for serious illnesses from COVID-19. • People with MS should continue DMTs and discuss specific risks with their MS healthcare provider prior to stopping a DMT.
  • Before starting a cell depleting DMT* or a DMT that carries warnings of a potentially severe increase in disability after stopping**, people with MS and their MS healthcare providers should consider specific risks (e.g. age, comorbid health conditions, location) and benefits.
These recommendations have been endorsed by the Consortium of Multiple Sclerosis Centers (CMSC) and all other members of the MS Coalition***.
In addition to the above guidance, the MS International Federation (MSIF) provides global advice on DMT use during the COVID-19 pandemic. Their recommendations provide more detailed guidance for the initiation and continuation of DMTs and are endorsed by the National MS Society and the MS Coalition. With both the MSIF and the Society’s recommendations, decisions regarding DMT use should be individualized and made by the person with MS and his/her healthcare provider.
We are continuing to monitor this quickly evolving situation and these recommendations may be modified as additional data becomes available.
* Cell depleting therapies include: Lemtrada, Mavenclad, Ocrevus and Rituxan (used off-label in MS)

** DMTs with a warning of potentially severe increase in disability after stopping include: Gilenya and Tysabri

*** Members of the MS Coalition include: Accelerated Cure Project for Multiple Sclerosis, Can Do MS, Consortium of Multiple Sclerosis Centers, International Organization of Multiple Sclerosis Nurses, MS Views and News, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National Multiple Sclerosis Society and United Spinal Association

Starting, Stopping or Switching Disease Modifying Therapies

Most people should start a DMT if recently diagnosed and prescribed a DMT. Some DMTs may increase your risk of infections, including COVID-19. This must be weighed against other factors including your MS activity, your age, other medical conditions and other potential factors that could impact your DMT. This is a difficult decision and needs a thorough discussion with your MS provider.
Based upon what is known right now, the National MS Society does not believe stopping your DMT is necessary and any decision regarding your DMT should be discussed with your MS healthcare provider. Stopping your DMT may place you at greater risk for new MS activity. We recommend that you speak with your MS provider for advice about your specific situation and weigh the risks and benefits. If you take an infused DMT, call ahead to confirm and learn of any new procedures to follow. If your infusion center is not open, contact the manufacturer of your medication to find a new infustion center.
The guidance from the National MS Society is to discuss the risks and benefits of your DMT with your MS provider. Stopping an effective DMT may increase your risk of more MS activity – including relapses. Switching a DMT to one that lowers risk of getting an infection, including COVID-19, should be discussed with your provider. Some DMTs may increase your risk of COVID-19 infection, but this is not a certainty. The risks and benefits need to be weighed for each individual situation.

Relapses During Pandemic

Steroids or ACTHAR gel are safe to administer for MS relapses.

Immunomodulators vs. Immunosuppressants

DMTs that are immunomodulators generally do not suppress the immune system and do not place you at greater risk for infections – including COVID-19. These include:
  • glatiramer acetate (Copaxone®, Glatopa®, Glatiramer Acetate Injection®)
  • interferons (Betaseron®, Rebif®, Avonex®, Extavia®, Plegridy®)
  • natalizumab (Tysabri®)

Some DMTs are immunomodulators but also restrict the ability of the immune system to respond to infection and therefore may increase your risk of infections, including COVID-19. These include:
  • dimethyl fumarate (Tecfidera®)
  • diroximel fumarate (Vumerity)
  • fingolimod (Gilenya®)
  • siponimod (Mayzent®)
  • teriflunomide (Aubagio®)

Some DMTs deplete certain types of immune system cells known as lymphocytes and are considered immunosuppressants – and therefore may increase your risk of infections, including COVID-19. These include:
  • alemtuzumab (Lemtrada®)
  • cladribine (Mavenclad®)
  • mitoxantrone (Novantrone®)
  • ocrelizumab (Ocrevus®)
  • rituximab (Rituxan®)

source: National MS Society

Additional Resources

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“NfL” Biomarker Associated with Disability Progression in Large Swedish Study of People with MS

COVID-19 is unprecedented and rapidly changing situation.
Get the latest public health information from CDC: https://www.coronavirus.gov 
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May 20, 2020
Higher blood levels of a molecule called Neurofilament light chain (NfL) were associated with progression of disability in blood samples from 4,385 people with MS. Although further study is needed before this blood test can be used routinely to predict disease course and guide the care of individuals with MS, these findings add to growing evidence that NfL has potential as a predictive biomarker of MS disease activity and disability progression. .
  • NfL is a fragment that is part of the debris that enters the spinal fluid and blood when nerve wires (axons) are damaged. Studies of NfL in the bloodstream and in spinal fluid have been underway to better define how this biomarker may be employed to help detect and predict disease activity and response to treatments, not only in MS but in other disorders.
  • In this large study, the researchers identified 4,385 people with MS from Swedish MS registries, and 1,026 people who did not have MS. They tested NfL levels in blood samples and followed the participants for five years.
  • People with MS had significantly higher levels of NfL in their blood, compared to people without MS. Higher NfL levels were significantly associated with worsening disability during the next year and with the likelihood of reaching moderate disability (affecting daily activities but not walking ability).
  • This large study adds to a growing body of knowledge needed to determine the best use of NfL as a biomarker for MS care, treatment decisions, and clinical trials. Additional studies underway will help standardize its use and help understand how age and other health conditions impact NfL levels. 


Plasma neurofilament light levels are associated with the risk of disability in multiple sclerosis” by Ali Manouchehrinia, PhD, and colleagues from the Karolinska Institutet was published on May 20, 2020 in Neurology.

Source



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Thursday, May 21, 2020

Multiple sclerosis and your eyes -- Nystagmus; Twitching; Optic neuritis, and More

COVID-19 is unprecedented and rapidly changing situation.
Get the latest public health information from CDC: https://www.coronavirus.gov 
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MS is characterized by the immune system damaging myelin — a substance that surrounds and protects nerve fibers. Damaged areas of myelin are referred to as plaques or lesions.
Demyelinating lesions can affect different parts of the CNS, including the optic nerves. One of the common early signs of MS is vision problems.

People with MS sometimes experience myoclonus. Myoclonus is sudden, involuntary twitching or quivering of a muscle or group of muscles.
It’s a reactive nerve cell misfire that sends the wrong signal to your muscles. This could be the result of demyelinating lesions from MS.

There are a variety of causes for an eye twitch in people with MS, such as nystagmus and internuclear ophthalmoplegia. Other eye conditions such as optic neuritis and diplopia are also known to affect many people with MS.

Nystagmus is uncontrolled repetitive vertical, horizontal, or circular eye movements. This makes it nearly impossible to steadily view objects.
Acquired nystagmus is not an uncommon symptom of MS, and often results in diminished vision and depth perception. It also can impact coordination and balance.
If you have visually disabling nystagmus, your doctor might recommend medications such as:
Internuclear ophthalmoplegia (INO) is damage to the nerve fibers that coordinate both eyes in looking from side to side (horizontal movements). Vertical eye movements are not affected.
If INO is caused by a stroke (typically in older people), it usually only affects one eye. If it’s caused by MS (typically in younger people), it often affects both eyes.

Some studiesTrusted Source have indicated that INO is seen in about 23 percentTrusted Source of people with MS and that most people will experience a complete recovery.
For acute internuclear ophthalmoplegia, your doctor might recommend intravenous steroid therapy.


A common vision problem related to MS, optic neuritis is an inflammation of the optic nerve that can result in blurred vision, pain, and a sudden loss of vision — typically in one eye.

Rarely causing blindness, optic neuritis might result in the blurring of vision or a dark spot in the center of the visual field, known as a central scotoma.

Optic neuritis commonly improves on its own, but based on your specific situation, your doctor might recommend a steroid such as methylprednisolone administered intravenously, possibly followed with oral steroids.



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Cell therapy repairs multiple sclerosis damage and restores motor functions in mice

COVID-19 is unprecedented and rapidly changing situation.
Get the latest public health information from CDC: https://www.coronavirus.gov 
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Migraine headache/epilepsy brain image
A cell therapy out of the University of Rochester Medical Center is in development to treat neurological diseases marked by a loss of glial cells, which are critical to preserving signals between brain cells. (CC0 Creative Commons)

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Glial cells play several key roles in the central nervous system, including supplying oxygen to neurons and forming myelin—the protective, fatty substance that protects the nerve cells’ axons. In multiple sclerosis (MS), glial cells called oligodendrocytes are attacked by the immune system, causing a breakdown of myelin that disrupts the signals between nerve cells and results in a loss of motor and sensory functions.

A team of researchers at the University of Rochester Medical Center (URMC) is developing a method for regenerating myelin with progenitor glial cells. When they transplanted the cells into mouse models of MS, the cells transformed into new oligodendrocytes and restored myelin. They reported the results of the study in the journal Cell Reports.
Now, a company that was spun out of the university last year, Oscine Therapeutics, is preparing the cell therapy for human clinical trials in MS and other glial diseases, according to a statement. Oscine received an undisclosed amount of funding last year from Sana Biotechnology, a cell therapy developer backed by funding from Arch, Flagship and F-Prime.

The cell therapy got its start in the lab of Steve Goldman, M.D., Ph.D., professor of neurology and neuroscience at URMC, who led a 15-year effort to figure out how to coax stem cells into becoming glial cells. Their hope was to develop the therapy to treat progressive multiple sclerosis—a stage of the disease during which oligodendrocytes become exhausted and can no longer make myelin.

In the mouse study, Goldman and colleagues showed that after transplantation, the human glial progenitor cells migrated to damaged areas of the brain. After they created new oligodendrocytes, myelation was restored, as was motor functioning, the team reported. Goldman is the scientific founder and a shareholder in Oscine.

CONTINUE


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Disease-modifying Treatments and Cognition in Relapsing-Remitting Multiple Sclerosis: A Meta-Analysis


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Full report

Abstract

Objective: Disease-modifying treatments (DMTs) are the gold standard for slowing disability progression in multiple sclerosis (MS), but their effects on cognitive impairment, a key symptom of the disease, are mostly unknown. We conducted a systematic review and meta-analysis to evaluate the differential effects of DMTs on cognitive test performance in relapsing-remitting MS (RRMS).
Methods: PubMed, Scopus, and Cochrane Library were searched for studies reporting longitudinal cognitive performance data related to all major DMTs. The standardized mean difference (Hedges g) between baseline and follow-up cognitive assessment was used as the main effect size measure.
Results: Forty-four studies, including 55 distinct MS patient samples, were found eligible for the systematic review. Twenty-five studies were related to platform therapies (mainly β-interferon [n = 17] and glatiramer acetate [n = 4]), whereas 22 studies were related to escalation therapies (mainly natalizumab [n = 14] and fingolimod [n = 6]). Reported data were mostly confined to the cognitive domain processing speed. A meta-analysis including 41 studies and 7,131 patients revealed a small to moderate positive effect on cognitive test performance of DMTs in general (g = 0.27, 95% confidence interval [CI] = [0.21-0.33]), but no statistically significant differences between platform (g = 0.27, 95% CI = [0.18-0.35]) and escalation therapies (g = 0.28, 95% CI = [0.19-0.37]) or between any single DMT and β-interferon.
Conclusions: DMTs are effective in improving cognitive test performance in RRMS, but a treatment escalation mainly to amend cognition is not supported by the current evidence. Given the multitude of DMTs and their widespread use, the available data regarding differential treatment effects on cognitive impairment are remarkably scant. Clinical drug trials that use more extensive cognitive outcome measures are urgently needed.
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Wednesday, May 20, 2020

When It Comes to COVID-19, It's Not You, It's We and It’s a Community Thing

By |May 14th, 2020

COVID-19The strangest thing happened yesterday.

I was sitting at home, like many of us have been since the novel coronavirus shattered our world, when someone knocked on the front door. I could see through the window that it was someone with bags in his hand. Probably just a delivery. I’ll wait.

After a minute, the dog is still barking his head off, so I get closer to the window.

Now I see that it’s someone I know from church. I wave, thinking he’ll put the packages down and leave. That’s what we do nowadays, either leave the packages or step six feet back so we can talk without inadvertently sharing air space with a potential carrier.

He waves back. And stays there. Right in front of the door.

Okay, now I’m confused. I know I should social distance, but I don’t want to be rude. He will probably just step back when I open the door, right?

Wrong. As soon as the latch turns, he’s within two feet of me. I haven’t been this close to another human being (other than my carefully cloistered wife, kids, and caregivers) for at least 45 days. I freak out.

“Dude! Six feet!” I yell and pull back on the joystick of my chair. I fly backwards a little too far, smashing into the dining room table.

He laughs playfully and offers to set the bags by the front door. “I gotta be careful,” I say, a little embarrassed, still trying to figure out what is going on. 

What is he thinking!? Did we not just experience a pandemic? Mass graves. Bodies stored in ice rinks because the morgues were too full. Empty cities. Massive layoffs.

He’s not even wearing a mask. Did the threat of COVID-19 magically evaporate overnight? I know, some states have lightened restrictions, but we are still supposed to avoid getting within spitting distance of each other, right? Does he not know the governor extended the stay-at-home order two more weeks? Am I crazy or is he?

He tells me he just got back from a trip to St. George, Utah, where, he says, all restrictions have been lifted. “Yeah, people are hanging out together, swimming in the pool at the hotel, no masks,” he says. “Everything is back to normal.”

He probably notices the look of terror spreading across my face.

“I should probably be more careful,” he admits. Then, referring to his victory over cancer, he says, “But it’s been five years, and I feel good.” 

It’s a Community Thing

CONTINUE READING this amazing article direct from NewMobility .com

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Tuesday, May 19, 2020

Novel Coronavirus Disease 2019 (COVID-19) and Neurodegenerative Disorders

Abstract
During the last few months, the whole humanity is experiencing largest and most severe sudden influx of COVID-19 outbreak caused by the novel Coronavirus (CoV) originated from Wuhan, China. According to the WHO reports, total 3862676 positive cases and 265961 deaths have been recorded worldwide due to COVID-19 infection as of 09 May 2020. CoVs are a large family of viruses (enveloped, single-stranded RNA viruses), which includes Severe Acute Respiratory Syndrome Coronavirus (SARS-CoV) and Middle East Respiratory Syndrome-related Coronavirus (MERS-CoV). New SARS CoV2 is the members of Betacoronavirus genus. These viruses cause infections in bats, camels and humans, and a few other associated species. Despite many neurologic complications associated with SARSCoV-2 infection, it is still unclear whether these symptoms results from direct neural injury or due to some other reason. Currently, it appears that most of the neurological symptoms of COVID-19 are non-specific and secondary to the systemic illness. A single case of acute hemorrhagic necrotizing encephalopathy has been reported. SARS-CoV-2 associated Guillain-Barré syndrome is an atypical case. Till today, no convincing evidence is available to confirm that the SARS-CoV-2 virus directly affects nerves system in humans. However, post-infection surveillance will be necessary to identify the possible post-COVID-19 neurologic syndromes. This article is protected by copyright. All rights reserved.

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Easy to connect with the REALTALK MS, Podcast series

It’s the easiest way to connect with the RealTalk MS podcast. You’ll never miss another episode.
AND…we’re sharing free bonus content available ONLY in the RealTalk MS app.
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Monday, May 18, 2020

SLEEP and Multiple Sclerosis

This content was created by the National Sleep Foundation

Multiple Sclerosis (MS) is a disorder in which the body’s immune system attacks and destroys myelin, a membrane that covers axons in the brain and spinal cord. Myelin serves both to protect axons and to speed the conduction of electrical impulses along nerve fibers. The destruction of myelin results in scarring and loss of nerve cells and can lead to a whole host of symptoms for MS patients, including paralysis, depression, loss of memory, fatigue and problems with vision, balance, bladder and bowel control. However, because it is a disease that progresses slowly, MS can be very mild for some patients and many people with MS are able to lead full and active lives.
According to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, MS is more common in women than men and is more than twice as likely to affect white people than people of other races. Also, the prevalence of MS among people in the more northerly climate zone is five times higher than for people in the tropics. The cause of MS is unknown but environmental, viral and genetic causes may play a role. MS is not fatal or contagious, although severe symptoms may lead to a shortened or decreased quality of life for some people.
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Fatigue, one of the most common symptoms of MS, can be profoundly disabling. The cause of fatigue in MS is not well understood but some researchers believe that the degree of fatigue felt by MS patients is an indication of how far along the disease has progressed. However, a recent study conducted by researchers from Pennsylvania State University found that depression and sleep disturbance were stronger predictors of fatigue in MS patients than disease severity. Specifically, the results of this study showed that all three contribute to fatigue in MS, but that sleep disturbance is the biggest contributor.
MS is also associated with a number of sleep disorders. According to a study led by W. Elon Fleming, MD, at the Sleep Disorders Center at Island Hospital in Anacortes, Washington, the most common sleep disorders in MS patients are insomnia, nocturnal leg spasms, narcolepsy, REM sleep behavior disorder, and sleep disordered breathing. Restless legs syndrome (RLS) is also highly prevalent among MS patients. One study revealed that among 156 MS patients, 51% met the criteria for RLS based on neurological examination and medical interview and that RLS was associated with higher MS-related disability. Medications used to treat MS may also cause or worsen these problems. The study also showed that pain, medications and frequent nighttime urination influenced sleep among MS patients.
Reducing fatigue and improving sleep is critical to improving the lives of people with MS. There are many options for improving sleep, including both behavioral and pharmaceutical remedies. It is very important that physicians screen for sleep problems among their MS patients and that they are aware of the options to treat them.

Symptoms

Initial symptoms of MS may be brief and mild and usually first occur in people between the ages of 20 and 40. Each MS patient has a unique set of symptoms, depending on where in the brain the destruction of myelin occurs. Some patients are most affected by severe fatigue while others complain of blurred vision and loss of balance. Still others may suffer most profoundly due to loss of bladder and bowel control. MS patients might experience any of these and other symptoms either fully or partially while others go for months or years with no symptoms whatsoever. Another feature of the disease is unpredictability; MS patients may have severe symptoms one day and be symptom-free the next.
Many of the body’s essential functions depend on the brain and spinal cord, at least as a relay station, and damage to it in people with MS results in a wide variety of symptoms. Here are some of the most common:
  • Visual impairments – eye twitching, blurred vision, double vision, loss of color vision, blindness
  • Muscular effects – weakness, loss of muscle tone, slurred speech, muscle contractions, foot drop, paralysis
  • Sensory symptoms – numbness, tingling, pain, burning, itching, loss of awareness of location of body parts
  • Coordination and balance – loss of coordination or balance, shaking, over or undershooting limb movements, nausea, vomiting, stuttering, loss of ability to move to a rhythm
  • Bowel, bladder and sexual dysfunction – urinary incontinence, bowel incontinence, impotence, lack of ability to achieve orgasm
  • Cognitive abnormalities – short and long-term memory problems, speech impairments
  • Mood disorders – mood swings, anxiety, depression
  • Sleep disorders – insomnia, nocturnal movements, sleep disordered breathing, narcolepsy, and REM sleep behavior disorder
  • Other – epileptic seizures, problems breathing, acid reflux, impaired taste and smell, difficulty swallowing, problems regulating heat and cold, fatigue
There is no single test for MS. When a person seeks treatment for MS-related symptoms, a doctor will consider neurological exams, laboratory tests and the patient’s medical history to confirm the diagnosis. The clinical diagnosis is usually confirmed by an MRI examination of the brain.

Treatment

There is no cure for MS at the present time. The goal in treating MS is to limit the destruction of myelin, which typically requires suppression of the body’s immune system. If you are diagnosed with MS, your doctor may prescribe pharmaceutical therapies that achieve this and address your related symptoms. However, some people with MS lead healthy lives without any treatment at all.
Because of its connection to symptom severity, sleep problems should be given special consideration in MS patients. There are many options for improving sleep, including both behavioral and pharmaceutical remedies. If you have MS and are suffering from sleep problems, talk to your doctor about diagnosing and treating them.

Coping

Getting a good night’s sleep helps to alleviate many common symptoms of MS, including chronic fatigue, mood and memory problems. Daytime naps can also help, but only if napping does not interfere with night-time sleep.
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Sunday, May 17, 2020

Understanding MS Progression

Published April 23, 2020

Peter Chin Group Medical Director, Neuroscience, U.S. Medical Affairs, Genentech*
*While Peter was an employee at the time this article was published, he has since left Genentech.


Over the last 25 years, the scientific community has made significant advancements in understanding and treating multiple sclerosis (MS), which have helped transform what it means to live with the disease. Today, people diagnosed with MS have a far better chance of delaying disability, due to clinical advances in diagnosing MS faster and the availability of more medicines. But how do we move from delaying MS progression to stopping it or, perhaps someday in the future, even reversing it? This question is at the core of Genentech’s ongoing MS research.

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MS is a progressive disease from the start, regardless of how it manifests, and the biology of the disease is very complex. We believe that a better understanding of MS progression and being able to identify its underlying signs – paired with early treatment – could help tackle progression and preserve people’s day-to-day function over the long-term. Looking at MS from the first symptoms and signs of the disease is especially important in progressive forms of the disease, as disability tends to accumulate relentlessly.

Genentech has been conducting therapeutic clinical trials that aim to address unmet medical needs in Progressive MS for almost 15 years. With each clinical trial across the field, whether successful or not, we as a community learn a lot about the disease itself, which in turn enables us to design more sophisticated studies in the next round.


In the videos below, I share more about how our understanding of MS progression is evolving and how we’re applying these insights to our research in Progressive MS.

Peter sheds light on our understanding of MS progression and what will be needed to truly tackle the disease.
To watch additional videos and to read more, please click here



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