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Saturday, January 14, 2017

MRI Access Fund


                                                                  
  

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What is the MSAA MRI Access Fund?

Magnetic resonance imaging (MRI) is a valuable tool for diagnosing multiple sclerosis and tracking its progression. Both aspects are critically important in helping people find answers, monitor disease activity, and make informed treatment and healthcare decisions. Unfortunately many people lack the financial means or adequate health insurance coverage to acquire the necessary MRI. Recognizing this, MSAA created the MRI Access Fund.
The MSAA MRI Access Fund assists individuals who are uninsured or under insured acquire a cranial magnetic resonance imaging (MRI) exam to help determine a diagnosis of multiple sclerosis or evaluate current MS disease progression. MSAA will work with eligible individuals, physicians, imaging centers and insurers to help fund the necessary MRI.

What services are provided through the MRI Access Fund?

Insurance payment assistance: For those of low/moderate income who have medical insurance (including Medicare) and are not able to meet the co-insurance, the MRI Access Fund will assist in covering the remaining co-insurance balance of the MRI cost, up to a specified maximum amount.
Full payment: For those of low/moderate income who do not have medical insurance or cannot afford their insurance deductible, the MRI Access Fund will pay for the MRI through contracted imaging centers across the country.

Who is Eligible? --  continue Reading

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The Ideal Clinical Trial Patient? (An article by an MS Patient)


                                                                  
  

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By Laura Kolaczkowski - January 2017


Just when I thought the patient experience and  our voice was being considered  and respected as a serious partner to the drug industry, I get that reality call to take off the rose colored glasses.  This time the splash of cold water to bring me back to my senses came via a tweet from a respected person in the patient advocacy field.This person had received an electronic newsletter from Clinical Leader, a group that states they are the "premier online community that helps streamline clinical research by connecting trial sponsors and cutting edge service providers." and when the headline 'The Anatomy of the Ideal Clinical Trial Participant' was selected, this infographic appeared -

perfect_trial.jpg


When this company, who I remember talking with at DIA 2016 because they were a rather large and loud exhibitor, was called out on Twitter for this graphic, the immediate corporate response was  the 'infographic was not intended for this use in this context - published without our permission."  Then the next tweet contritely states 'we regret any offense it conveys and respect patients!'  It appears they have removed this infographic from their website because the existing links on the corporate web not longer exist.  However, it does live on in other places, and in many twitter accounts in the health care advocacy community, and raises red flags and sets off consumer alarms. I know I will be using it again and again as an example of insensitivity to the concept of patient engagement and patient centric research, as will others.

If a company creates a product that is not meant to be shared, where else was it meant to be used? Is this a marketing tool for clients they want to recruit to hire their services? Is this another example of locker room banter and jokes that really isn't thought to mean anything? It appears to have been professionally designed so it can't be passed off as someone's crude doodling while bored during a meeting listening to the latest recruitment statistics. It sickens me to think that professional presentations in board rooms may have included the tale of this little piggie.


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Has MS Made You a Hermit? (an MS Patient's story)


                                                                  
  

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Profile photo of Laura Kolaczkowski


Lately I’ve noticed I could care less and less to get out of my own space and socialize, and it takes something special to motivate me to gather with friends or family either in person or even on line.  It’s not that I don’t still like (most of) them – it’s just I find I have no desire to go. This partially has to do with energy levels as well as my own attitude toward solitude.

Has MS Made You a Hermit?

Needing help can be exhausting

Maybe it’s because I’ve grown tired of the looks on the faces of others when they insist on helping me when I can do whatever task it is at hand.  Yes, their offers are well intentioned, but like a child I want to scream ‘I can do it myself!’ whether it is insistence to carry my plate of food from the buffet line to the table or simply pick up something I’ve dropped on the floor.  Sure MS makes many of those actions slower and tougher for me to do, but it’s still good for me to do it for myself.  I know these people mean well, but nonetheless it stirs my mood, and by avoiding these situations altogether, I feel better or at least less confrontational about my accumulating disabilities.

Social media can take a lot out of you

I certainly understand why any of us might want to hunker down and not interact with others, particularly out on social media these days. I find myself avoiding Facebook unless necessary because so many people believe there is no longer a need for civility or facts.  I like to think I understand and have respect for facts and then assume others feel the same but this past year or so has been troubling to realize facts mean nothing.  This applies to politics and cures for MS – both are fraught with lies, half-truths and worse.  The same goes for civility and kindness – I can usually ignore the comments from strangers who want to read my writings and then hide behind the anonymity of the internet to tell me I am an idiot, but the harsh social commentary that has come from people who I always thought of as compassionate and caring, is jarring and make me want to retreat further. MS is enough of a monster to live with – I don’t need to allow more beastly actions into my space.

Socializing can be overwhelming

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The Torture That Is MS-Related Chronic Pain (A patient's story)


                                                                  
  

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The Torture That Is MS-Related Chronic Pain
Profile photo of Devin Garlit


I’ve been writing about my journey with multiple sclerosis for a while now. I’ve discussed a wide range of issues that I’ve dealt with over my many years with the disease. I have, however, held off on devoting an entire article to one of my worst symptoms until now. While I’ve made mention of it before, chronic MS-related pain is a symptom that I encounter every single day. It’s one that is hard to find relief from and it’s one that I know has a profound impact on who I am. For good and for bad, chronic pain can change you.
When I was diagnosed some 17 years ago, I had no idea that pain could even be an issue with MS.  Despite having a grandfather with MS, I found I was naive about a lot of the issues that can come with MS. As far as pain was concerned, I figured that most pain would come from the number of falls I’d take. I also didn’t start out with pain as a symptom, not until about 14 years diagnosed did I really start to suffer from it. And suffer I have; I never expected the kind of intense pain that seemed to suddenly appear out of nowhere. It’s as if someone has a voodoo doll of me somewhere and is really working it over with an assortment of torture devices.
I keep saying “pain” without really explaining it; I feel many of my colleagues have done a great job talking about pain in the past, so I don’t want to simply rehash what’s been said. I’ve also talked before about my issues sleeping with pain (what I like to call Painsomnia). With MS, pain can really encompass a number of things: Trigeminal Neuralgia (a stabbing pain in the face), the MS Hug (a tight, constricting pain in stomach and sometimes chest area), Lhermitte’s sign (an electric shock type sensation up your spine when you tilt your head down), Spasticity, Paresthesia (numbness and tingling), and Dysesthesia (burning, stabbing, or tearing pain). Now that we’ve gotten some official and crazy looking words out of the way, I’ll tell you that my personal experience deals mostly with the last three of those. I’ve already done a full post on spasticity, so I’ll try not to go into too much more about that. In addition to that spasticity, I am plagued by numbness/tingling sensations and brutal burning and stabbing pain.
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MS PATHS: Be Aware of the Info You Share


                                                                  
  

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JANUARY 11, 2017     
BY LAURA KOLACZKOWSKI



Would you open your bank account and write a blank check to just anyone requesting something of value from you? Of course not. So, why would we do that with our healthcare information?
I was recently sent an informed consent form from the MS clinic where I am treated, requesting that I allow my clinical data to be used for the MS PATHS (MS Partners Advancing Technology and Health Solutions) study, sponsored by Biogen. I wrote about this upcoming study in 2015, and how there was a lack of details and transparency as to what information would be gathered, and who was going to benefit.  You can read that background story, Dr. Google Will See You Now. Really.
When I wrote that story I never imagined I would be asked to consent my own information to this study. It seems the MS Clinic I go to is one of what is “expected to be 10” sites in the U.S. and Europe. This has posed quite a dilemma for me because I know my neurologist well, and there are plenty of good reasons he can offer as to why I should consent to have my healthcare data made available to the MS PATHS study. I understand the enormous value of big data, but as I read the informed consent form, I became more troubled than ever with this study and the lack of details, so I went looking for more information.
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How To Be Kind To Yourself To Be A Healthier You


                                                                  
  
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written by Cathy Chester

It’s true that my health’s been further compromised by a series of unfortunate events. One of them is the direction our country is going. I’ve spent a lot of time watching breaking news stories and reading compelling articles about what I consider to be dark clouds on the horizon.
You can’t predict when my wacky disease will strike. I’m not aware of large studies correlating stress and MS, but as I stated in prior posts it sure hasn’t helped.
healthy
They say life imitates art. If that’s true I think I’m a Cubist painting by Picasso where my broken parts have yet to be reassembled.
As my body challenges me I realize it’s time to take stock of my life. My health depends on it. Something has to change if I want to heal.
It’s time to choose a better path.
The words from Robert Frost’s most famous poem have guided me for years. But in the fog that’s enveloped me I’ve somehow lost my way.
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
The time has come to travel those roads once more in hopes of finding spiritual wellness.
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Friday, January 13, 2017

Biomarkers of multiple sclerosis: current findings


                                                                  
  

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Violaine K Harris, John F Tuddenham, Saud A Sadiq

Tisch Multiple Sclerosis Research Center of New York, New York, NY, USA

Abstract: Multiple sclerosis (MS) is an autoimmune disease affecting the brain and spinal cord that is associated with chronic inflammation leading to demyelination and neurodegeneration. With the recent increase in the number of available therapies for MS, optimal treatment will be based on a personalized approach determined by an individual patient’s prognosis and treatment risks. An integral part of such therapeutic decisions will be the use of molecular biomarkers to predict disability progression, monitor ongoing disease activity, and assess treatment response. This review describes current published findings within the past 3 years in biomarker research in MS, specifically highlighting recent advances in the validation of cerebrospinal fluid biomarkers such as neurofilaments (light and heavy chains), chitinases and chitinase 3-like proteins, soluble surface markers of innate immunity, and oligoclonal immunoglobulin M antibodies. Current research in circulating miRNAs as biomarkers of MS is also discussed. Continued validation and testing will be required before MS biomarkers are routinely applied in a clinical setting.

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Proximity to Heavy Traffic Raises Dementia Risk – But Not That of MS, Study Finds


                                                                  
  

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Proximity to Heavy Traffic Raises Dementia Risk – But Not That of MS, Study Finds

The effect air and noise pollution can have on the development of neurodegenerative diseases is not fully understood, but results from a large study published in The Lancet suggest living close to heavy-traffic roadways could increase the risk of developing dementia — but not other neurological diseases, such as multiple sclerosis (MS) or Parkinson’s disease.
Heavy traffic — in addition to being noisy — can increase levels of nitrogen oxide, ultrafine particles, heavy metals, and volatile organic compounds in the air. Studies have shown that some of the pollutants impair cognitive function in animal models and alter brain structure.
Living near major roads and the incidence of dementia, Parkinson’s disease, and multiple sclerosis: a population-based cohort study” examined the role heavy-traffic exposure has in the development of dementia, Parkinson’s disease, and MS — three of the most common neuro-degenerative diseases.

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MS Update: Two Pharmaceutical Giants Will Work Together To Treat The Auto Immune Disease


                                                                  
  

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As of the present time, there is no known cure to Multiple sclerosis which has baffled experts ever since its emergence. However, that could possibly change in no time as two of the well-known pharmaceutical giants, Sanofi and ImmuNext have recently announced that they have finally come up to an agreement to develop an antibody with the potential to treat a series of autoimmune diseases, including multiple sclerosis (MS) and lupus. The two companies revealingly said that they are currently planning to launch a research collaboration that will allegedly support clinical testing of the drug that will hopefully shed light to the mysterious disease that continues to affect millions of people globally.


According to reports revealed by BioPharma Dive, the said agreement would be able to grant Sanofi with exclusive worldwide manufacturing and marketing rights to ImmuNext's preclinical drug INX-021, a monoclonal antibody that is known to calm a cellular pathway for a protein called CD40L or CD154. Experts believe that the protein has the ability to regulate the immune response and contribute to autoimmune diseases and chronic inflammation if by any chance that it becomes hyperactive.





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Thursday, January 12, 2017

Neurology / Neuroscience Multiple Sclerosis Muscular Dystrophy / ALS Ataxia: Causes, Symptoms, and Treatments


                                                                  
  

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Ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects, and other voluntary movements.
Many different things can cause ataxia, including multiple sclerosis, head trauma, alcohol abuse, stroke, cerebral palsy, genetics, or tumor. Ataxia may also be a symptom associated with certain infections.
There are many types of ataxia. In this article, we will discuss some of the more common types, causes, and available treatments.
Contents of this article:
  1. Types
  2. Causes
  3. Symptoms
  4. Diagnosis
  5. Treatments
Fast facts on ataxia
Here are some key points about ataxia. More detail and supporting information is in the main article.
  • Ataxia can be caused by a wide range of factors
  • Symptoms can include poor coordination, slurred speech, tremors, and hearing problems
  • Diagnosis of ataxia can be challenging and often involves a range of tests
  • Although ataxia is not always curable, symptoms can often be alleviated

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Sunday, January 8, 2017

Cognitive Decline in MS & Age-Related Pathologies


                                                                  
  

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December 13, 2016


While the progression of motor decline is amplified by aging in multiple sclerosis (MS), the degree of cognitive impairment does not vary across the lifespan, according to a recent study. Thus, evidence of accelerated cognitive impairment in older adults with MS may signal the presence of other age-related cognitive pathologies. In all, 698 MS patients (aged 29–71 years) and 226 healthy controls (HCs; aged 18–72 years) completed neuroperformance tests covering ambulation, upper extremity function, information processing speed, and memory. Researchers found:

Linear regression models predicting cognitive and motor function revealed main effects of MS/HC diagnosis, age, and education across all measures.
There was also an interaction between age and diagnosis on measures of motor function, but not on cognitive outcomes.

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Most MS Patients Not Meeting Nutrition Guidelines


                                                                  
  

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Int J MS Care; ePub 2016 Nov 2; Balto, et al


An overwhelming majority of individuals with multiple sclerosis (MS) are not meeting nutrition guidelines, according to a recent study, and more than 90% with 2 or more risk factors reported the co-occurrence of poor diet and insufficient levels of physical activity. 69 participants with MS completed self-reported measures of smoking status, nutrition, alcohol use, physical activity levels, and sociodemographic and clinical characteristics. Researchers found:

Poor diet was the most common risk factor, with 85.5% of the sample not meeting dietary guidelines.
Of participants with 2 or more risk factors, 90.3% were not meeting dietary and physical activity guidelines.
There were differential rates of meeting physical activity guidelines between men and women, such that 73% of women were not meeting physical activity guidelines compared with 38% of men.

Citation:
Balto JM, Ensari I, Hubbard EA, Khan N, Barnes JL, Motl RW. Individual and co-occurring SNAP risk factors: Investigation of smoking, nutrition, alcohol consumption, and physical activity in persons with multiple sclerosis. [Published online ahead of print November 2, 2016]. Int J MS Care. doi:10.7224/1537-2073.2016-040.

Source


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