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Wednesday, August 16, 2017

How MS Affects the Entire Family

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Open communication and mutual support help patients, parents, spouses and kids.

By Lisa Esposito, Staff Writer 

There's something about multiple sclerosis, or MS, that disrupts families at every level. "I've often talked about it as the uninvited guest," says Rosalind Kalb, vice president for health care information and resources at the National Multiple Sclerosis Society. "This disease shows up in your household, moves in, spreads its junk all over and doesn't leave. It means everyone has to develop a relationship with this intruder."
MS is a progressive disease of the central nervous system that affects the brain, spinal cord and optic nerves. Multiple sclerosis causes multiple symptoms – from blurred vision to blindness; mobility issues ranging from poor balance and coordination to paralysis; slurred speech, tremors and severe fatigue; and problems with memory and concentration.
A family sits on a hospital bed.
Keeping the lines of communication open can help families offer support and information. (GETTY IMAGES)
There's no cure for MS, and it's unpredictable. People with relapsing/remitting MS, the most common form, experience periodic flare-ups that come and go. About two-thirds of cases occur in women. First symptoms – often visual – most commonly happen between ages 20 and 40, according to the Centers for Disease Control and Prevention, although children and older adults can be diagnosed, too.
When you put those risk factors together, "Women of childbearing age, who are starting careers and families, are the folks who seem to be most often at risk," says Kalb, a clinical psychologist and the author of "Multiple Sclerosis For Dummies."
Shifting Family Shoulders

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Disproven Theories About the Causes of MS and Its Flare-ups

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Science may get closer to actual causes when it learns what doesn't trigger the disease.

By Heidi Godman, Contributor | March 24, 2017

A home heathcare nurse exchanges a smile with her patient. The patient, receiving nutrition from a feeding tube, has advanced Multiple Sclerosis (MS).
While some multiple sclerosis causes have been nixed, smoking and Vitamin D deficiency are both still associated with the risk for developing MS. (GETTY IMAGES)
 You may hear about a lot of potential causes of multiple sclerosis, the progressive, incurable disease that damages the brain, spinal cord and optic nerves. Theories have ranged from genetic to environmental triggers, some as simple as living with a pet.

In reality, it's difficult to say exactly what causes the condition. "If there were just one thing that caused MS, I believe we would have figured it out by now," says Dr. Robert Shin, a professor of neurology at MedStar Georgetown University Hospital.
Understanding MS
MS starts when the body's immune system mistakenly attacks the nerves and their protective covering. "I use the analogy of friendly fire. It's like we have soldiers in the field fighting the enemy. Sometimes they can get confused and accidentally shoot allies," Shin says.
The damage interrupts the signals being transmitted throughout the body, resulting in symptoms ranging from numbness and tingling in the extremities to vision problems, muscle weakness, trouble walking and even paralysis.

The disabling nature of the condition has motivated scientists to try to pinpoint why the immune system takes aim at a healthy central nervous system. Researchers are also seeking to understand what causes people with the most common type of MS – called relapsing-remitting MS – to experience symptom flare-ups periodically.
Eliminating MS Causes
It was only the 1960s when scientists began unraveling how the MS disease process works, according to the National Institutes of Health. In the six decades since, researchers have studied many potential causes of MS, and come up with few answers.
Scientists are at least beginning to understand what doesn't lead to MS onset. For example, scientists suspected for years that a virus carried by dogs, called canine distemper, was associated with the onset of MS in dog owners. A 1982 New York Times article recounts how two neurologists made the connection after three sisters developed MS in 1974, not long after the family's dog contracted distemper.
But there has not been enough clinical evidence to support a link between MS and canine distemper, reports the National Multiple Sclerosis Society.
The group notes that there is also a lack of evidence supporting an association between MS and:
  • Environmental allergens (allergies).
  • Exposure to the heavy metals mercury, lead or manganese.
  • Consumption of the artificial sweetener aspartame.
Nixed Relapse Triggers
When Dr. Colin Bamford began researching MS in 1976, scientists already knew the immune system was involved in the development of MS. But it wasn't clear what triggered MS relapses or the progression of disability.
One question, Bamford recalls, was whether physical trauma could lead to deterioration. 

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Monday, August 14, 2017

Promising New Treatments for Multiple Sclerosis

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Multiple sclerosis (MS) is a chronic disease that affects the central nervous system. Nerves are coated in a protective covering called myelin, which also speeds up the transmission of nerve signals. People with MS experience inflammation of areas of myelin and progressive deterioration and loss of myelin.
Nerves may function abnormally when myelin is damaged. This can cause a number of unpredictable symptoms. These include:
  • pain, tingling, or burning sensations throughout the body
  • vision loss
  • mobility difficulties
  • muscle spasms or stiffness
  • difficulty with balance
  • slurred speech
  • impaired memory and cognitive function
Years of dedicated research have led to new treatments for MS. There is still no cure for the disease, but drug regimens and behavioral therapy allow people with MS to enjoy a better quality of life.

Purpose of treatments

Many treatment options can help manage the course and symptoms of this chronic disease. Treatment can help:
  • slow the progression of MS
  • minimize symptoms during MS exacerbations or flare-ups
  • improve physical and mental function
Treatment in the form of support groups or talk therapy can also provide much-needed emotional support.


Anyone who is diagnosed with a relapsing form of MS will most likely begin treatment with an FDA-approved disease-modifying drug. This includes individuals who experience a first clinical event consistent with MS. Treatment with a disease-modifying drug should continue indefinitely unless the patient has a poor response, experiences intolerable side effects, or doesn’t take the drug as they should. Treatment should also change if a better option becomes available.

Read More

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Recruitment underway for PPMS Patient/Care-partner Medical Advisory Board meeting

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Patient Recruitment Notice:

A pharmaceutical/biotech company will be hosting a small Patient/Care-partner Medical Advisory Board meeting throughout the course of two half-days on Wednesday, November 8 and Thursday, November 9 in Los Angeles, CA.

The goal of this meeting it is to convene patients with a diagnosis of primary progressive multiple sclerosis (PPMS) and their care-partners to share their perceptions of PPMS care and treatment options, their own treatment choices, and their experiences and challenges with PPMS. This advice will inform and provide personal insight to the pharmaceutical/biotech company’s work in providing information about their product and appropriately engaging with the MS community in the future.

The pharmaceutical/biotech company will reimburse the travel expenses of invited participants, and provide an honorarium as thanks for their time and participation. 
Participants must:
· Be between the ages of 18 and 55
· Have a diagnosis (made by a physician) of PPMS for 3 to 10 years
· Not currently be participating in an MS drug clinical trial
· Have not previously participated in Patient/Care-partner Medical Advisory Board(s)
· Be interested in participating, with or without a care-partner; and
· Be willing and able to travel to Los Angeles, for a two half-day meeting on Wednesday, November 8 and Thursday, November 9 in Los Angeles, CA.  The meeting will be held at a hotel within the LAX International Airport.

If you are interested in attending, please contact Ali Anastasia at Ashfield Healthcare by email or phone. 

.  If/when a patient passes the screening, they will be notified the name of the ad board sponsor 

Please note that this study is not an MS Views and News Study, nor are we being paid for recruitment or the advertising for this posted notice. 
This posted message is only being shown, to bring exposure of this ad board meeting. 


6 of the Most Common Symptoms of Chronic Fatigue

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August 2017

If you suffer from a chronic illness like MS, then it’s highly likely that you’ll experience fatigue from time to time. Fatigue is different than just feeling tired, and generally it’s not something that can be fixed with an early night or by taking a little break.
With tips from the pros at, we’ve put together a list of six ways that chronic fatigue can affect sufferers on a daily basis.
You feel extremely exhausted. 
Everyone experiences feeling tired and worn out from time to time but chronic fatigue takes this a step further. People will often avoid doing things they enjoy because they don’t have the energy to go out or even get off the sofa. Getting through a day at work or school will leave them feeling extremely exhausted as though they have gone through their energy reserves and have nothing left.
You can’t get a good night’s sleep. 
You would imagine that fatigue could be solved with sleep, but patients who suffer from chronic fatigue often have trouble falling asleep or wake constantly throughout the night. This lack of sleep (or disturbed sleep) only adds to the problem and makes the fatigue worse. Even if you do get to sleep, many find that they don’t feel any better when they wake up.
You can’t concentrate. 
Fatigue also affects people cognitively. Many find it difficult to concentrate, that they forget things, and are easily distracted. Brain fog is a common symptom associated with fatigue and many report being unable to communicate well, often not being able to find the right words when speaking or forgetting people’s names.
Simple tasks zap your emotional energy. 
Completing simple tasks when you have chronic fatigue can seem like climbing a mountain. As well as being physically taxing, fatigue can also be emotionally and mentally taxing. Stressful situations may have you feeling completely overwrought or agitated.
You can’t balance. 
Extreme fatigue can also cause balance issues. People often report feeling unstable when standing upright, which can be relieved by lying down. Although there is no proven reason for this sensation, it’s thought that it could be due to less blood flowing to the brain when a person is standing up.
You’re constantly in pain. 

Chronic fatigue can also bring about pains and aches. People with chronic fatigue are more likely to suffer from headaches, joint aches, and muscle soreness.

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Tuesday, August 8, 2017

Multiple sclerosis: New blood test can identify types of MS and if treatments are working

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Updated 3 Feb 2017, 10:05pm

Patients with multiple sclerosis will soon have access to a new test which can tell them exactly what type of MS they have and how well their medications are working.
At the moment, patients have to have an array of expensive tests to determine what kind of MS they have.
The study, published in Nature scientific reports, shows a blood test could greatly simplify and speed up this process, allowing doctors to adapt a patient's treatment more accurately and rapidly.
Neuroscience Professor Gilles Guillemin from Macquarie University said the discovery was the culmination of 12 years' hard work in the lab.
Neuroscientist Gilles Guillemin
"We can tell you which sub-type of MS you have and if you respond to treatment," he said.
At the moment, patients have to wait weeks on a medication to see if it is effective.
"If you can have the blood test and see the marker not working, and this treatment doesn't work, the clinician will be able to realise very quickly change to another therapy," Professor Guillemin said.

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Ohio State researchers report breakthrough in cell regeneration

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Technology has potential for use in repairing organs, blood vessels and nerve cells
Published on August 07, 2017

Researcher Chandan Sen with the nanotechnology-based chip designed to deliver biological
Researcher Chandan Sen with the nanotechnology-based chip designed to deliver biological "cargo" for cell conversion. Image: The Ohio State University Wexner Medical Center

*** Video and photos available for download: ***
COLUMBUS, Ohio – Researchers at The Ohio State University Wexner Medical Center and Ohio State’s College of Engineering have developed a new technology, Tissue Nanotransfection (TNT), that can generate any cell type of interest for treatment within the patient’s own body. This technology may be used to repair injured tissue or restore function of aging tissue, including organs, blood vessels and nerve cells.
Results of the regenerative medicine study published today in the journal Nature Nanotechnology.
“By using our novel nanochip technology, injured or compromised organs can be replaced. We have shown that skin is a fertile land where we can grow the elements of any organ that is declining,” said Dr. Chandan Sen, director of Ohio State’s Center for Regenerative Medicine & Cell Based Therapies, who co-led the study with L. James Lee, professor of chemical and biomolecular engineering with Ohio State’s College of Engineering in collaboration with Ohio State’s Nanoscale Science and Engineering Center.
Researchers studied mice and pigs in these experiments. In the study, researchers were able to reprogram skin cells to become vascular cells in badly injured legs that lacked blood flow. Within one week, active blood vessels appeared in the injured leg, and by the second week, the leg was saved. In lab tests, this technology was also shown to reprogram skin cells in the live body into nerve cells that were injected into brain-injured mice to help them recover from stroke.
“This is difficult to imagine, but it is achievable, successfully working about 98 percent of the time. With this technology, we can convert skin cells into elements of any organ with just one touch. This process only takes less than a second and is non-invasive, and then you're off. The chip does not stay with you, and the reprogramming of the cell starts. Our technology keeps the cells in the body under immune surveillance, so immune suppression is not necessary,” said Sen, who also is executive director of Ohio State’s Comprehensive Wound Center.
TNT technology has two major components: First is a nanotechnology-based chip designed to deliver cargo to adult cells in the live body. Second is the design of specific biological cargo for cell conversion. This cargo, when delivered using the chip, converts an adult cell from one type to another, said first author Daniel Gallego-Perez, an assistant professor of biomedical engineering and general surgery who also was a postdoctoral researcher in both Sen’s and Lee’s laboratories.
TNT doesn’t require any laboratory-based procedures and may be implemented at the point of care. The procedure is also non-invasive. The cargo is delivered by zapping the device with a small electrical charge that’s barely felt by the patient.

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Monday, August 7, 2017

MS Wellness Workshop - Monthly meetings in Miami, FL

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Stop Comparing - Do what you Can Do!

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The other day I was out cranking it on the bike trail. It wasn’t an epic ride—the 20 mile mark still manages to elude me—but I put in a solid 13 miles over a couple of hours, decently impressive on an arm trike in 90-degree heat. And then I ran into Beth. You know, that Beth.

“Dave!” It was Beth Ulibarri, aka @MilesAndTrials, aka Ironman Beth. She also happens to be a fellow active MSer, only with a bit more emphasis on the “active” part. We all know of Beths, those absolute studs in the MS world that defy the disease with an athletic prowess that impresses even the pros (she has trained with our resident pro triathlete Kelly Williamson).

I asked how her ride had been and if she had logged a few miles that morning. “A few.” Like 90 in just under 5 hours. She was training on her Felt B12 TT carbon fiber bike (while decked out in her sponsored Klean kit) for the upcoming Ironman Lake Placid, a 2.4 mile swim, 112 mile bike and 26.2 mile run. (Update: She finished her fourth Ironman in 12:09 and set a new PR! Daaamn.)

Now, I could have looked down at my Craig’s List clunky trike with seven gears and felt jealousy. Or moped because on the best of days, I was putting in a fraction of the miles Beth logs JUST TO GET WARMED UP. But that’s a fool’s errand when you have an unpredictable disease like multiple sclerosis, one that affects each person wildly differently.  

It’s so tempting to compare yourself with others—the healthy, the diseased, even the “old you.” Don’t dare fall into this trap. Don’t compare yourself to Beth or, for that matter, to me. Do what you can do. Today. And the next time out, if your goal is to improve, strive to do it better. If it is to maintain, then attempt to match it. If it is to just try to do something healthy, then try. With all due respect to Yoda, it’s okay to just try.

Still bummed? Then remind yourself about Facebook. You know, when you see the posts of friends who are eating THE BEST MEAL EVER or doing THE COOLEST THING EVER. Sounds like they are having more fun than you, awwwe, sad face. But remember, those same friends are not going to post about the ungodly amount of diarrhea they got after that 5-star meal or that they permanently lost 10 percent of their hearing because they were too close to the stage when they got that high-five from Ke$ha (oh wait, she goes by just Kesha now). They probably also got food poisoning after eating a hot dog at the concert, had an unfortunate “accident” in the car on the drive home, and then were so distracted that they got into a fender-bender. (Imagine exchanging insurance information after that.)

See what I’m saying? Stop with the measuring sticks. 
Be inspired by others with this disease and then do what you can do. Today. 
And then tomorrow? Do what you can do.

Written by Dave Bexfield: 

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