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Saturday, July 1, 2017

Patients with multiple sclerosis may benefit from over-the-counter therapy


                                                                  
  
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Treatment options currently are limited for people suffering from secondary progressive multiple sclerosis. However, an OHSU pilot study suggests over-the-counter antioxidant lipoic acid holds promise in improving patients' lives.

he research was published June 28, 2017 in the journal Neuroimmunology & Neuroinflammation.
The randomized double-blind study involved 51 participants who completed the two-year trial. Twenty-seven people were given a 1,200-milogram daily dose of lipoic acid, with the remaining 24 participants given a placebo. Researchers are using the findings from the pilot trial to design the expanded multi-site clinical trial to begin later this year in Portland and other sites that have yet to be finalized.
"These are high doses," said lead author Rebecca Spain, M.D., M.S.P.H., an assistant professor of neurology in the OHSU School of Medicine. "And while it seems safe, we won't know whether it actually improves the lives of people with MS until we can replicate the results in the pilot study through a much bigger clinical trial. Fortunately, we're going to be able to answer that question with the participation of kind volunteers."
MS is a chronic condition that affects an estimated 2.3 million people worldwide. In MS, the sheath covering nerve fibers in the brain and spinal cord becomes damaged, slowing or blocking electrical signals from the brain reaching the eyes, muscles and other parts of the body.
The major finding of the pilot study involved measuring the degree to which lipoic acid arrested the rate of whole , as measured through magnetic resonance imaging.
The study revealed a 68 percent improvement over the placebo in slowing the rate of whole brain atrophy in patients with secondary progressive MS. For the sake of comparison, a clinical trial involving the recent FDA-approved pharmaceutical Ocrevus showed an 18 percent improvement over a placebo in slowing the rate of whole  atrophy for patients with primary progressive forms of the disease.
In addition, the pilot study suggested improved walking times and fewer falls among study participants who took a daily dose of lipoic acid compared with those who received the placebo. Researchers are eager to test those outcomes in the larger clinical trial.
A companion study, published concurrently by Neuroimmunology & Neuroinflammation, measured the rate of absorption and clearance of lipoic acid through periodic blood tests of pilot study participants. The results will help to inform the design of additional .
Lipoic  was determined to be safe and well-tolerated by  participants. Stomach upset was the most frequent side effect.
Read more at: https://medicalxpress.com/news/2017-06-patients-multiple-sclerosis-benefit-over-the-counter.html#jCp




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Thursday, June 29, 2017

The Intersection of Medical Marijuana and MS


                                                                  
  
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marijuana for ms

Written by Meg Lewellyn on April 17, 2017


In 2007, I was diagnosed with multiple sclerosis. I was momma to three young kids aged 9, 7, and 5 years, and I really didn’t have time to let MS take over my life. I was an active, probably overly involved “super mom” who never wanted to let anyone down and never wanted to show weakness or vulnerability.

MS swept in and shook that all up.

Initially, it struck where it hurt me most: my mobility. It went to crap overnight. In less than a year, I went from running 6 to 8 miles six days a week to needing to use a cane or my Segway to go anywhere outside of my house. It was a nasty blow, but one that I rolled with, finding the new ways to get things done, allowing myself to embrace the “new me” who seemed to be constantly in flux.

MS can redefine your life in an instant and then decide to mess with you and redefine it again tomorrow. I fought my way through the flares, fatigue, and fog, a warrior on a mission wielding my pink cane as a sword.

During this phase of my MS life, pain hadn’t arrived as a full-fledged member of the team I played against each day. It would pop its head out during my workouts, though. I would arrive at the gym feeling fine, only to discover burning pain, spasticity, and spasms within minutes. It hurt a lot, but knowing that it would subside shortly after finishing up made it bearable.


The rollercoaster that is MS pain


After four years, I was fortunate enough to begin to experience improvements in my mobility and balance. (There’s something to be said about divorce and a reduction in stress.) I put my cane away and began focusing on living without it. It was wonderful, this newfound freedom, and there were even days when “I have MS” wasn’t the first thought to go through my head when I woke up in the morning. When I was out, I stopped worrying I would fall or be unable to make it back to the car after a trip to the grocery store.

Then MS decided it wanted to play once again and opened the door to the pain. It slowly built over time, first popping up every once in a while. It was annoying but tolerable. But the occasional visit became a regular thing, taking over more and more of my life. Over the years, as the pain became constant and all-consuming, I talked to my doctors about it. I went from always rating my pain at 2 or 3 during my appointments to constantly writing “10++++” on the form (along with a few expletives, just to make my point).

I tried what my doctor prescribed. Sometimes, it would help a bit, at least at the beginning. But any improvements were short lived, and I would find myself right back in the midst of the pain, spending each and every day just hoping simply to make it through the day. I tried baclofen, tizanidine, gabapentin, methadone (Dolophine), clonazepam, LDN, amitriptyline, and nortriptyline. I self-medicated with alcohol. But none of it worked. The pain remained, and I sunk deeper and deeper into the world it created for me.

Why I was apprehensive about medical marijuana

I had discussed medical marijuana with my doctor a few times over the years, and I had even been given my medical prescription (MMJ card) about four years ago. The doctor didn’t know much about it, but suggested I research it. Recreational cannabis was legalized here in Washington, and cannabis shops began popping up all over the place. But I didn’t explore it as an option.




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Cladribine Tablets Are Only a Step Away from European Union Approval for Relapsing Multiple Sclerosis


                                                                  
  
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Merck’s cladribine tablets are now just one step away from obtaining European Union approval as a relapsing multiple sclerosis treatment.

The European Medicines Agency’s Committee for Medicinal Products for Human Use has recommended that the European Commission approve the tablets.


“The positive opinion from the CHMP [the committee] is an extraordinary development for our company, affirming our belief in cladribine tablets as a potential important treatment option for patients living with multiple sclerosis,” BelĂ©n Garijo, a Merck board member, said in a press release.

“We now eagerly await the European Commission decision, and the opportunity to make a difference in the MS treatment paradigm,” he said. “Our sincerest thanks to the entire MS community for their unwavering support throughout the cladribine tablets journey.”






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If My MRI Is Stable, Why Is My Walking Getting Worse?


                                                                  
  
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June 27, 2017


By: Ed Tobias




During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?”

Interestingly, within a few days of my exam, a Harvard Med School study was released that addressed a similar question: Is there always a link between the level of physical disability in some MS patients and the amount of lesions in the brain?


What my doctor said

My neurologist’s answer was pretty simple. Disease progression in parts of the body that are controlled by nerves along the spinal cord, such as the legs, is usually noticed by a patient physically before the progression can be seen on a spinal MRI. On the other hand, MS disease progression can be spotted on an MRI of the brain before it’s noticed physically. So, by regularly doing brain scans, a neurologist may be able to halt that progression by changing DMDs, for example, before it has a chance to have a physical impact. Doing a spinal scan doesn’t present the same opportunity.
The Harvard Med School study

Details of the Harvard Medical School study are reported in an article written for Multiple Sclerosis News Today by Jose Marques Lopes, PhD. The conclusion of this study is that, for some MS patients, there may be no connection between the number and size of the lesions that can be seen on an MRI of the brain and that patient’s level of physical disability.

The research found that a little over 13 percent of the patients who were studied had this “dissociation” between what the scan revealed and their disability level. Some had only a few brain lesions but lots of disability. Others had a lot of brain lesions but relatively little physical disability.

According to the researchers, patients in the low brain lesion but high disability group were prone to having a progressive form of MS, more cervical spinal cord lesions, and a lower physical quality of life. The study’s authors believe this may be due to their lesions being concentrated in the spinal cord rather than in the brain, and that’s pretty much what my neuro told me about my MS.

What about MS patients with the opposite — when their MRIs show a lot of brain lesions but they exhibit few physical symptoms? The Harvard researchers suspect these patients may be likely to have cognitive problems.
Bottom line

For the study: The researchers believe that this disparity between observable symptoms and MRI results complicates a neurologist’s ability to determine a prognosis for MRI patients.


For me: The study results, combined with what my neurologist told me the other day, explain why being told for many years that “the MRI looks great” was only half of my MS story.
Continue reading from MS News Today



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Doctors urge MS patients not to believe everything they read on the internet.


                                                                  
  
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For patients with complex and chronic medical conditions, knowledge is power. Without checks and balances, it also can be risky.
Physicians who treat patients with multiple sclerosis say the internet in particular provides a wealth of information, both good and bad. For patients seeking to learn more, Google can lead to websites and social-media platforms serving a steady diet of information about diagnosis, treatment and management of their disease.
While physicians welcome patient interest and knowledge, they also caution that not all websites are created equal and not all information found on the internet is valid.
“You don’t need to be a highly trained neuroimmunologist with multiple years of education to write something for the internet,” notes Aaron Boster, MD, director of the MS center at OhioHealth.
In general, physicians say they don’t discourage patients from seeking information online, as long as they bring what they find to their healthcare professionals.
When patients come to Boster with questions about things they’ve read on websites or online forums, “I see a patient who is engaged, who wants to be educated and involved in their care.”
So does Timothy Shephard, MD, vice president of neurosciences at Mount Carmel Health System. “The better informed a patient is coming into an appointment, the better that appointment is going to be. I have yet to meet a physician who doesn’t welcome a patient who has done research and is well-informed,” he says.
Tech-Savvy Patients
Because the average age of onset for MS is 30, many patients “are people who have grown up with an iPad in their hands,” Boster says. “These are millennials who are extremely comfortable with and savvy about the internet and social media.”
When seeking information about MS, physicians say this: Consider the source.
Especially in the first couple of years following a diagnosis, Boster advises patients to steer clear of the internet when it comes to MS advice. “It takes about two years for a patient to be comfortable in their own skin with their disease. They need to develop filters to evaluate what they read online. Until they do, their care team is that filter.”
Early in the course of their disease, “reading too much is guaranteed to make you frustrated,” says Boster, who also serves as OhioHealth’s system medical chief of neuroimmunology. Realizing, however, that patients won’t be able to resist the temptation, he urges them to “read with profound caution.”
Boster and others say it’s crucial for patients to bring everything and anything they read online to their physicians so they can separate fact from fiction. Physicians say it’s their job to temper expectations and provide reliable information. Boster has even initiated campaigns across Facebook, Twitter, Instagram and YouTube to dispense “digestible amounts of information” about the newest developments in MS.
Relying on the internet to diagnose and plan for multiple sclerosis is tricky because the disease manifests itself differently in each patient.
MS lesions can occur anywhere in the central nervous system, and symptoms can mimic other conditions, says Michael Racke, MD, a neurologist at OSU. For example, if the disease affects the optic nerve, loss of vision may result. If it happens in an older person, one might attribute that to normal aging. In a younger person, “We might be more inclined to think MS,” he says.
Because the disease represents a unique interface between the nervous system and the immune system, it’s nearly impossible to predict how it will evolve from person to person, Boster says. Twins can have the same disease yet experience it differently, he explains.
Due to this variability, “You can read something from a reputable source, and it still might not apply to your particular disease.”
Online Communities
By its nature, MS can feel like a “lonely” disease, Boster says. Some of its symptoms, such as pathologic fatigue, aren’t obvious or observable. Because of its relapsing/remitting characteristics, patients might seem well one month and debilitated the next.
That can cause problems in the workplace, where employers might mistakenly believe employees are shirking responsibility or malingering.
The Multiple Sclerosis Society of America has created visual models of the relapsing/remitting nature of multiple sclerosis to help employers understand what’s happening.
When dealing with workplace challenges and other issues, patient forums are another online source of support and information.
“Especially for the newly diagnosed, they can be helpful,” Shephard says. “Forums can be a good source of really creative ideas from people who’ve gone before you.” They can offer guidance, for instance, on the best places to shop to avoid fatigue, how to deal with summer heat, how to adapt a house for wheelchair access.
Because a significant number of MS patients have difficulty with cognitive processing at some point during the course of the disease, the forums can provide answers on how they and their caregivers deal with the situation, Shephard says.
Boster says forums serve their best purpose by providing a safe place for patients to share with one other. “There is a sense of acceptance, understanding and community that is invaluable.”
They also can be confusing because of the volume of opinions expressed.
Boster cautions that online platforms can be “the bathroom wall of comments,” with little accountability or ownership.
Too Good to Be True?
Those caring for people with multiple sclerosis feel perhaps most uneasy about the internet when it’s used to promote unproven,potentially dangerous treatments.
In the past few years, for-profit stem-cell clinics have proliferated in the United States and abroad. Their websites do not go unnoticed by patients, some of whom are willing to try anything.
“In the last 12 months, I’ve had so many patients ask me, ‘What about these stem cells?’” Boster says.
Although stem-cell therapy is not approved by the US Food & Drug Administration to treat MS, the clinics claim it provides relief from the disease. Some sites feature video testimonials from patients who say their lives have been transformed.
“It looks pretty impressive,” Racke says. “But are patients putting themselves at risk and undergoing procedures that aren’t medically necessary?”
He understands their frustration. “Patients who are desperate may be looking for something that is too good to be true. There may be a little too much enthusiasm for untested, unproven treatments.”
Such direct-to-consumer appeals by people promising miracles are “quackery,” Boster says. “It’s predatory behavior that is abominable. It’s selling false hope, and it’s taking advantage of people who are very vulnerable.”
Shephard says patients in the secondary progressive stages of MS are most at risk for seeking cures at any cost. “The best you can do is educate them on the potential risks of alternative therapies and explain why FDA approval is so important. But at the end of the day, it’s the patient’s right to do what they feel they need to do,” he says. “Healthcare is not about forcing people to do something. It’s about advising patients to make the best decision possible.”
Laurie Loscocco is a freelance writer.




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A Good interview of MS Community Outreach


                                                                  
  
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HELP me to create awareness of MS to those OUTSIDE the MS community. Listen to this interview and SHARE ---
When you have a few minutes, please listen to this interview with Erika Lyons Richardson and Stuart Schlossman:

http://www.blogtalkradio.com/msgsn/2017/06/29/ms-me-community-outreach-with-stuart-schlossman

Topic: Community Outreach --- (with mentions of partnering MS orgs)


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6 less-common symptoms (Hearing loss, Tremors, Headaches, Breathing probs, itching, and seizures) of MS


                                                                  
  
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title
(http://www.momentummagazineonline.com/wp-content/uploads/2017/05/800_362_iStock-4556198631.jpg)

They may not be as widely known, but physical challenges such as hearing loss can be part of the MS picture.

by Lori De Milto
When Jeannie, the star character of the 1960s sitcom “I Dream of Jeannie,” waved her hands about, she was using her magical powers as a genie to help astronaut Tony Nelson, who had freed her from her bottle, recalls Dara Brown, a 40-year-old Baltimore resident. But when Brown’s hands started moving on their own, it wasn’t intentional or helpful. “If I went to grab something, my hands would fly all over the place, like Jeannie,” she says.
Brown’s uncontrollable shaking, or tremor, is one of the less-common symptoms of multiple sclerosis. It started six years after she was diagnosed with MS in 2006 at age 30. At first, her handwriting looked funny and her fingers hit the wrong keys when she tried to type on the computer. Within about a month, her hands shook so much that she couldn’t feed herself.
Most tremors caused by MS are action tremors, like Brown’s, in which the tremor starts when the person moves; it usually affects the hands and arms. Brown’s neurologist prescribed an anti-seizure medicine called carbamazepine, which she takes before she eats. “It’s not a cure, but it helps,” she says.
Brown’s happy that it does: Tremor is one of the most difficult MS symptoms to treat. “Drugs that typically work for essential tremor (another type of neurologically induced shaking) or Parkinson’s disease tend not to work with MS tremor,” says Dr. David E. Jones, a neurologist at the James Q. Miller Multiple Sclerosis Clinic at the University of Virginia Health System, and an assistant professor of neurology at the University of Virginia School of Medicine. “Most of the time, the improvement from treatment is mild.” But other approaches, such as physical therapy or using weights on one’s wrist, can often help.

Sudden, intense itching

Headaches & Seizures

Trouble hearing

Breathing problems

Uncontrollable shaking, or tremor

Tremor is just one of several symptoms considered to be “less common” among people with MS, even though 25 percent to 58 percent of people living with the disease experience it. And many of the other less-common symptoms associated with MS can be successfully treated, either with medications, technology or other treatments. The other less-common symptoms of MS are headache, breathing problems, hearing loss, seizures and itching. (See chart at right.)
Doctors don’t know why some people have these “less-common” symptoms and others don’t. “Presumably the basis for this is location of the lesion,” notes Dr. Jones, but it remains unclear why some locations in the brain and spinal cord are affected more commonly than others.
Hear, hear!
Stephanie Crystal Wolfstone-Francis started having trouble hearing in her mid-30s, a symptom she and her doctor believe is due to MS.
“I struggle to understand what people are saying,” says the 68-year-old resident of Auburn, Maine, who wasn’t officially diagnosed with MS until about 15 years ago. In meetings, Crystal Wolfstone-Francis uses either a personal amplifier or a computer-based service that translates spoken words into text that she can read.
However, most people with MS who have hearing loss experience it differently than Crystal Wolfstone-Francis, whose hearing loss was progressive. Its onset is usually sudden, and can arise during an MS relapse or in hot weather. It typically occurs in one ear only and “the hearing acuity tends to get better over time,” says Dr. Jones.
The other 4 symptoms
The other uncommon symptoms, like most aspects of MS, vary from person to person. The good news is that treatments are available to help alleviate all of them.
Headaches may be migraines or tension headaches related to spasticity. Medications, physical therapy and environmental changes can help.
Breathing problems can include shortness of breath and difficulty breathing deeply. A pulmonologist may recommend medications, and a respiratory therapist may provide breathing exercises or other treatments.
Sudden, intense itching can occur anywhere on the body or the face, and while this can be exasperating, several types of medications can reduce or take away the itch.
Seizures can occur in people with MS. In many people who are affected, the seizures tend to be mild. They can involve brief episodes of unconsciousness or loss of awareness, and may or may not include uncontrollable movements of the arms and legs, or repetitive movement (like rubbing hands). Some individuals experience generalized seizures, which can affect the entire body. Again, medications are usually quite successful in limiting these.
Is it really MS?
Many things can cause tremor, headache, breathing problems, hearing loss, seizures or itching. “Just because you have MS and one of these symptoms, that doesn’t necessarily mean that MS is causing the symptom,” says Dr. Jones.
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