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CHAMPIONS TACKLING MS - AWARDS Dinner, Honoring Aaron Boster, MD and Jon e. Glaser, DDS - now open for registration. Visit www.events.msvn.org

Saturday, July 18, 2015

Memory and Recall: 10 Amazing Facts You Should Know

memory and recall
Human memory and recall works nothing like a computer, but that’s what makes it all the more fascinating to understand and experience.
- See more at: http://www.spring.org.uk/2012/10/how-memory-works-10-things-most-people-get-wrong.php#sthash.BMOWmUDA.dpuf



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How to Deal With Stress and Anxiety: 10 Proven Psychological Techniques -

Post image for How to Deal With Stress and Anxiety: 10 Proven Psychological Techniques

The best way to reduce stress is, of course, to identify the source and get rid of it.
If only this were possible.

You can try to avoid people who stress you out, say ‘no’ to things you know will cause you stress, and generally do less stuff.

Unfortunately, this is often out of the question or you would have already done it.


So, here are 10 techniques you can use to deal with stress that you can’t avoid.

1. Develop awareness

This is the step most people skip.
Why? Because it feels like we already know the answer.
But sometimes the situations, physical signs and emotions that accompany anxiety aren’t as obvious in the moment.
Here are a few common symptoms of stress and anxiety:
excessive sweating.
dizziness.
tension and muscle aches.
tiredness.
insomnia.
trembling or shaking.
a dry mouth.
headaches.

So, try keeping a kind of ‘anxiety and stress journal’, whether real or virtual.
When do you feel anxious and stressed and what are those physical signs of anxiety?
When you can identify what’s stressing you out and how you react, you’ll know when to use the techniques below.

2. Simple power of your breath

The mind and the body each feed back to the other.
For example, standing confidently makes people feel more confident.
It’s the same with anxiety: taking conscious control of breathing sends a message back to the mind.

So, when you’re anxious or stressed, which is often accompanied by shallow, quick breathing, try consciously changing it to relaxed breathing, which is usually slower and deeper.

You can count slowly while breathing in and out and try putting your hand on your stomach and feeling the breath moving in and out.

3. Avoid venting emotions

Some of the ways we react to stress are built on false conceptions of how the mind works.
‘Venting’ — letting your emotions out in an angry, tearful and emotional rush — is a good example.

It’s commonly thought that emotions have to be ‘let out’ in order to reduce them.
This simply isn’t true.

Venting emotions can actually cause them to become more powerful, rather than allowing them to subside or reduce.

None of this is to say that you shouldn’t talk to others about what is happening, it’s just that the form it takes shouldn’t be a blast of raw emotion.

4. Rethink your mindset

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Friday, July 17, 2015

MS related MEMORY STUDY now available at University of Miami


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   MS Views and News Disclaimer
 As a service and courtesy to you, the MS Views and News™  (MSVN) organization wants to inform you of this research opportunity.  MSVN  has had no role in developing the content of these studies. MSVN respects your privacy and does not disclose your personal information to third parties.

To enroll, please use the number provided in the research announcement.
   



Thursday, July 16, 2015

LATE-STAGE Multiple Sclerosis - an MS Patient's Story

By Laura Kolaczkowski—July 2, 2015
You may find this conversation unsettling, so please decide for yourself if you want to read on. I am discussing the worst case scenarios for people with aggressive, progressive MS, and what may be referred to as late-stage MS. This is in response to the recent MultipleSclerosis.net MS in America survey and what the respondents asked for in additional information.
When I began writing about multiple sclerosis, a common question from the newly diagnosed had the theme of ‘am I going to die from my MS?” I would answer quite earnestly – MS won’t kills us. The life expectancy for someone with multiple sclerosis is very similar to the general population and the leading cause of death for people with MS is heart disease, cancer and stroke, according to the MS Foundation.  They point out that MS affects the quality of life but not the quantity.1
I was challenged by more reading, research, and some other people with multiple sclerosis to rethink my answer. While MS technically is not a killer by itself (except in rare circumstances), it can cause enough problems and symptoms with complications that can be fatal, and multiple sclerosis can at the very least be named an accomplice in death for some people.
The majority of people with MS will live a life about the same length as their peers, but there is the small percentage of people, estimated at 10-15%, who will have a very aggressive form with a high degree of disability.2 This is the face of multiple sclerosis that is rarely talked about – the people with MS who are on the far end of the Expanded Disability Severity Scale (EDSS), who are totally dependent on others and are facing certain death from complications of this disease.
Continue Reading


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Caregiver Perspective: Independence Battles Protection



Donna Steigleder- One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. 

Here’s why, I think. Him: Lynn was in his 40’s when he was diagnosed with MS. 
He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along and suddenly he...


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Not All Snowflakes are the Same - an MS patient's story

by: Matt Allen G- 

So I recently decided to make the switch from Tysabri to Lemtrada. I did not talk too much about it on my own blog because A) I just have not been on top of it due to me not feeling well and B) I didn’t know enough about Lemtrada and how it works to be able to talk about it without spreading misinformation. 

So I mentioned it very casually. As a blogger I am used to writing an article and hearing all sorts of opinions either “on my side” or “against it”. 

I am more than OK with people disagreeing... 




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Is Your MS Bothering You Today?

by: Ashley Ringstaff- 

Have you ever heard the sentence, “Is your MS bothering you today?” or something to that extent? 

It seems to happen to me with people that I don’t see all that often, or aren’t as ‘educated’ about the disease. But it tends to bother me at times. Mainly when people ask me things like this, that I’ve told multiple times the workings of Multiple Sclerosis. 

I understand that not everyone wants to ‘hear’ about MS, and I can understand that. But don’t try and ask me about MS, and to take the time to really educate you so you can...




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Risk Assessment Ability Declines With Multiple Sclerosis Disease Severity According To Survey

July 2015 - by: Maureen Newman

The ability to assess risk may decline as multiple sclerosis disease status progresses over time, as determined by a recent study from University of Alberta in Canada. Principal investigator Esther Fujiwara, PhD, and lead author of the study, Ashley Radomski, used thegame of dice task (GDT) to challenge patients with multiple sclerosis to make risk assessments. Individuals with more severe disease were less able to make decisions when faced with risky situations.
“What we found in our study is that those patients who have increased disease severity, as indicated by a particular subtype of multiple sclerosis or by greater structural changes in the brain, did have greater decision-making disabilities than patients who were considered less severe,” said Radomski in a news release from University of Alberta. The changes seemed to be related to brain atrophy.
Radomski and Dr. Fujiwara were motivated to conduct the study to understand how multiple sclerosis may affect decisions that patients must make in their daily lives. “People with multiple sclerosis are faced with many complex decisions on a regular basis—for example, choices about which medications to take or not take, what short- or long-term effects are desirable or undesirable, which side-effects seem acceptable or unacceptable, and so on,” explained Dr. Fujiwara.
During the GDT, 32 patients with multiple sclerosis and 20 healthy controls were asked to evaluate the risks of throwing dice and choosing combinations of predicted outcomes. According to the article, a less risky choice would be more numbers in a chosen combination. This less risky choice would be accompanied by a lesser reward, potentially leading some participants to choose unwisely. By analyzing this behavior, the researchers were able to draw insights on the way patients make everyday decisions.
Continue with this read from: MultipleSclerosisnewstoday

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Biogen Reports Another Tecfidera PML Case

Non-fatal case is the second one for the oral MS drug. 

by Kristina Fiore Staff Writer, MedPage Today

There's been a second case of progressive multifocal leukoencephalopathy (PML) with dimethyl fumarate (Tecfidera) for multiple sclerosis, a Biogen spokesperson confirmed.

The company said it reported the case -- which wasn't fatal -- to regulators including the FDA but would not specify where the case occurred

It occurred in a patient with primary progressive MS who had prolonged severe lymphopenia, which is on the drug's label as a risk factor for PML, according to Biogen spokesperson Catherine Falcetti.

"It's very similar to what we saw with the other case," Falcetti told MedPage Today. "It's within the risk profile, and the risk-benefit ratio remains favorable."

The other PML case with Tecfidera, reported in the New England Journal of Medicineearlier this year, occurred in a 54-year-old woman with MS, who had severe lymphopenia for 3.5 years.

Another case of PML was reported at that time, but it occurred in a patient who was taking a compounded formulation of dimethyl fumarate for psoriasis

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Tuesday, July 14, 2015

New to MS Views and News: MS CLINICIAN DIGEST: POSTINGS BY MEDICAL EXPERTS

MS CLINICIAN DIGEST: POSTINGS BY MEDICAL EXPERTS

All information shared on this website is for educating members of the MS community. MS Views and News is not responsible for articles and opinions provided by the medical consultants on this website. The information on this website is not intended to treat anyone or replace any formal relationship with a physician or other qualified health care professional.
Furthermore, the contents of the MS Views and New (MSVN) Website, such as text, graphics, images, information obtained from MSVN's licensors, and other material contained on the MSVN Site ("Content") are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the MS Views and News Website 
If you think you may have a medical emergency, call your doctor or 911 immediately. MS Views and News (MSVN) does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Site. Reliance on any information provided by MSVN, MSVN employees, others appearing on the Site at the invitation of MSVN, or other visitors to the Site is solely at your own risk. -- Disclaimer: The stories/ articles written, are views solely expressed by the writer of each posting -
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This is a new page for MS Clinicians to write articles for the healthcare community.
If you are an HCP and want to provide information, please send your article to us for medical board review.

If you are a patient, caregiver or anybody else with interest in reading these articles, please stop-in to visit this page.

For Direct access to this page on the MS Views and News website, click here

Or simply visit our website www.msviewsandnews.org to access other aspects that pertain to the MS community



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Living with MS and Planning for a Family: Women’s Concerns

Written by:  Megan Weigel, DNP, ARNP-c, MSCN   *   Date: 7/12/2015

            Living with Multiple Sclerosis (MS) can cause feelings of uncertainty, anxiety, and even fear to arise when the discussion of family planning is brought to the table.  The purpose of this article is to offer some practical advice about issues surrounding pregnancy for women living with MS.

            First of all, MS has no effect on pregnancy itself.  Rather, pregnancy is beneficial for most women with MS because it shifts the immune system into an anti-inflammatory state.  In fact, according to one study, relapse rates fell by 70% during the third trimester.  Many women ask about the high risk of relapse after pregnancy.  While the relapse rate in the first 3 months after delivery rises by 70% above pre-pregnancy level, only about 30% of women will relapse during this period.  A woman may have less of a chance of relapse in this time period if she had been on disease modifying therapy (DMT) prior to becoming pregnant, and if she had a lower incidence of disease activity. 

            It is important to note that most MS specialists would not recommend staying on DMT while trying to become pregnant or during pregnancy.  Each DMT has a different “wash-out” period.  If you and your partner are planning a family, your timeline should be discussed with your MS specialist as soon as possible.  




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New MS Study Shows TYSABRI Improves Cognitive Impairment

JULY 13TH, 2015 


Researchers at Spedali Civili of Brescia in Italy recently published findings in the journalPLoS One that Biogen’s Tysabri (natalizumab) can improve cognitive impairment in patients with relapsing remitting multiple sclerosis (RRMS) over the course of at least three years. The study is entitled “Natalizumab Significantly Improves Cognitive Impairment over Three Years in MS: Pattern of Disability Progression and Preliminary MRI Findings.

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New treatment for MS now available in the DC area

Thomas James, WUSA4:47 p.m. EDT July 13, 2015

The treatment, called Lemtrada, has been used around the world for several years.

TYSONS, Va. (WUSA) -- It's a condition where the body disrupts the nervous system. Multiple Sclerosis, or MS, affects more than 400,000 people here in the United States. A new and highly anticipated treatment for MS has now made it's here to our region.
In 2002, Melissa Gray from Ashburn was having an unusual episode.
Gray says, "I was having difficulty speaking, my speech was slurred, and my walking, I wasn't walking straight."
She went to a doctor who simply said she was dehydrated. Her family was not convinced, so she went to an ER.
"I went to the emergency test and they did a CAT scan and it showed that I had like a million lesions on my brain," says Gray.
Melissa found out that she has multiple sclerosis. It's a condition where the immune system attacks the lining surrounding the nerves in the brain, causing them to malfunction. These attacks happened periodically. Over the years Melissa used many different types of treatments for relief. But, eventually the attacks started happening more frequently.
Melissa sees Dr. Heidi Crayton of the Multiple Sclerosis Center of Greater Washington. Dr. Crayton also worked on a clinical trial that could help patients like Melissa.
The treatment, called Lemtrada, has been used around the world for several years. But it's been a long road for drug approval here in the US.
Dr. Crayton says, "There were some issues that kind of needed to be hammered out between the company and the FDA. Clinical trial design and things like that."
There was a huge push from the MS community and healthcare patients to get this medication approved. Finally in December of last year, the FDA approved Lemtrada.
"It's a once a year infusion. This medicine actually works by rebooting the immune system. It kind of wipes it out, and reboots it, a kind of healthier, better immune system if you will," adds Dr. Crayton.
Melissa is the first patient here in the DC area to receive this new treatment.
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Clays' Boots were made for WALKING: Singer Clay Walker continues fight against multiple sclerosis

Published: 

NASHVILLE, Tenn. (WKRN) – Country music star Clay Walker has hosted a charity golf tournament for the past eight years  in California to raise funds in the fight against multiple sclerosis.
He has a very personal reason for working to find a cure for the disease.
“When I was first diagnosed in 1996, I was told that I would be in a wheelchair in four years and that I would be dead in 8,” Walker said.
Walker’s friends from Tennessee, Texas, California and far beyond head to Pebble Beach, California, in early summer for his annual Clay Walker Charity Classic.


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Monday, July 13, 2015

Introduction to iConquerMS

Let Me Introduce You…
By Cherie C. Binns RN BS MSCN for MSCN and ACP
July 13, 2014

Last summer I was contacted about my knowledge of Multiple Sclerosis and the research process in that field.  I coordinated a couple of small clinical trials locally and know the basics of the research process.   For instance, I know that to bring a new treatment for MS to market, there is an average of fifteen (15) years of intensive research and almost one BILLION dollars spent before the FDA is ready to look at the data presented and approve the treatment or medication to be used in the Multiple Sclerosis Population (or cancer or diabetes or heart disease or any number of other illness families). 

The call I received was generated by a small but dedicated group of people who have been working together for nearly a decade at the Accelerated Cure Project  (ACP).   The goal of this group, as I understood it then, was to gather health information and biological samples (blood) that could be shared with researchers to lower the cost of the research, standardize research (same information used by many can eliminate what we call “outliers” or information that is just sitting out there and no one quite knows what to do with it) in exchange for the results of their findings.   It is thought this may shave a few years off the research process and lower the cost of bringing new treatments to market.

That phone call last summer was being made many times over to people who were not only familiar with the research process, but with membership drives, and Not for Profit Governance and more.  Uniquely, at least half of the people chosen to be contacted were persons living with Multiple Sclerosis! (PWMS)  They were in the infancy of forming  iConquerMS, a Patient Powered Research Network (PPRN), to see that the kinds of research that those of us living with MS were most concerned was being done…and quickly!   The goal is to communicate with researchers to let them know what “we, the people” feel is most urgent and most important right here and right now!  Once our Governance, Membership and Research committees were formed, we began to brainstorm in conference calls to find ways how we would get the news out to the MS Community that they could have a voice and their information had power to drive research and their ideas could become actual research projects. 

iConquerMS  uses surveys similar to some you may have done through NARCOMS and it also gives people a place to offer research suggestions, share their  health record data, volunteer and  in general, have personal input and, at times, control over the outcomes and time lines and costs of research. We also hope to partner with NARCOMS in the future to share and augment each other’s data toward a better understanding.  You still have the opportunity every Spring and Fall to continue your participation in NARCOMS and add new understanding through iConquerMS.org.  iConquerMS.org Plans to roll out our surveys in the Summer and Winter so you don’t feel overwhelmed with the help you are asked to give to both groups.

At the beginning of this year, we launched a monumental campaign with a goal to bring our membership to 20,000 persons with MS by the beginning of 2016.  We are doing well but could use some more help.  Persons with MS (PWMS) are needed to log in, set up a free account, share their story and data and recruit family and friends to do the same.  Why family and friends?   We also want to further look at the role genetics or the environment may have in who gets MS Additionally.  You have the opportunity to help researchers in other fields of medicine as iConquerMS has banded together with 17 other PPRNs around the country through PCORI (Patient Centered Outcomes Research Institute), which serves as an umbrella organization for patient powered research. Our data is protected through de-identification methods, before it is shared with researchers.
We are excited that some of the early research findings are coming back to us showing similar findings when the same data is used.  


Please take some time to go to www.iConquerMS.org , become a member, contribute your data and information, be an active participant in the research process and in so doing, be a self-advocate for a Healthier YOU!  There is a place on the website to reach out to the Governing Board Members with questions about why we choose to do what we are doing and how we are doing it.   Or you can check out who serves on the various committees and reach out to us with your questions.  Finally, those of us who live with Multiple Sclerosis have a strong voice and a say in what we want to see studied and can move the course of research forward with our individual contributions to iConquerMS.


The above information was provided to MS Views and News by Cherie C. Binns RN BS MSCN

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Sunday, July 12, 2015

Trans-cranial magnetic stimulation for depression...

Trans-cranial magnetic stimulation


A cutting edge new therapy is giving new hope to those suffering with depression. 

The therapy targets a specific part of the brain and some patients said they have been success where regular medication has failed. 

The therapy includes the sound of targeted magnetic pulses being sent to a specific part of this patient's brain to treat severe depression. 

Psychologist Dr. Ahmed Dokmak said only the specific part of the brain needs to be stimulated, which is called trans-cranial magnetic stimulation, or TMS. 

“TMS is the revolution that psychiatry has been waiting for,” Dokmak said. 

Some psychiatrists have begun offering neurostar TMS therapy to patients for whom medication does not work or when side effects are too great. 

With TMS, the pulsed magnetic field stimulates brain cells that help produce chemical to better regulate mood. 

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