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Friday, March 17, 2017

Share YOUR ideas for MS Care

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Written by: Laura


Aaron Boster, MD, who happens to be my MS neuro, is the opening keynote speaker for CMSC 2017.  The Consortium for MS Centers annual meeting  (CMSC) has a strong patient focus rather than on research, and in talking about his speech, it becomes really clear there is a huge opportunity to infuse our voice  and ideas into his presentation.

His talk is titled The Comprehensive MS Center

Where he practices at Ohio Health,  all the services I might need are there.  If I see him and we decide I need OT, PT, social work, even a wheel chair fix – I can get it done there.  It’s a great concept but not widely available.  When a referral is written for me to have other things done, I don’t have to leave the clinic space – the group I am referred to comes to me.

As Dr. Boster presents to this audience of several thousand  MS clinicians  (doctors, nurses, social workers, therapists) about how he envisioned the comprehensive MS center at Ohio Health, he is looking for reflections from people with MS from around the country and even internationally, of what their experiences with ta comprehensive treatment  center might be like.  In other words - what works and what doesn’t work at various MS clinics.  This is not meant to be a critique of doctor styles or prescribing practices for drug treatment.

He would also like to include your picture (using your first name only, and the STATE you are in and not your city).   If you are not comfortable with using your picture, a substitute avatar for a patient would be used.  Imagine the impact on your own doctor sitting there and suddenly seeing  your face on the big screen and a quote about  the services you do or don’t receive. Talk about a way to grab their attention!! This is not meant to be a love fest or a chance to publicly shame neuros, but a real opportunity for us to use our presence to raise awareness of our clinical needs.  If you have an anecdote about your experience, that might also be useful/entertaining

To this end, I invite you to share a few brief thoughts.  The more people who participate in this activity, the greater the impact will be.  A few questions that are needed for the foundation of each patient quote are:

Your name (only first name will be use!)

Your state (or country)

Photo (if you are willing) – make sure it is a high quality resolution pic because when I say big screen, I mean BIG screen

Is your  MS doctor in a comprehensive clinic setting?   Yes or no

Optional: If it is not too sensitive, would you also share the name of your neurologist?  The name will NOT be used in the presentation but could be helpful in figuring out the status of their practice such as if it is an independent site or in an academic setting.

What would your ideal MS Comprehensive Center offer?

The following are just some of the topics you might reflect on in your comments as to how a comprehensive MS center might make your clinic experience better: Obviously  don't write about more than a couple and only a sentence or two will be used so don't over think this.
·         What do you like/dislike about how the clinic you attend is configured?
·         Are the services available to you in your MS clinic all you need or do you have to travel to other places?
·         How convenient is it in your area to get the services you need?
·         How often do you see your neurologist? Or do you see someone else such as the MS nurse?
·         If employed, how does taking time off of work to go to various referrals impact your job?
·         If parent of small children, how difficult is it to arrange childcare for your medical visits ?
·         When you get a referral for another service such as PT/OT, how long do you normally wait before you make contact or get in to see them?
·         Is the MRI lab in your clinic or do you have to travel somewhere else for MRIs?
·         What is missing from your clinic experience?
·         Is the clinic space easy to get to? Does the use of public transportation to come and go or the availability of valet parking for large clinics make a difference?
·         Are support groups or other meetings held at your clinic?
·         Are your phone calls handled quickly or do you leave messages and wait for return calls?
·         Anything else you might say about MS, and  the treatment you have available in your clinic.
·         In a perfect world, what would your clinic look like? I encourage you to think creatively – there may be something even Dr. Boster’s comprehensive center does not have……
·         Does your clinic have a way to find out what patients think, such as an advisory board? Would that be useful to your clinic?
I hope you see value in helping with this approach to an important and highly visible talk at CMSC and you will share ideas with me.  For two reasons, please send your photo and comments/quotes to my email at – (this is my blog email account and doesn’t get much mail and a good place I can be sure to gather your messages)

1)      I will de-identify your quotes if you wish to remain anonymous and your comments will even be blinded to Dr. Boster
2)      Dr. Boster has a major flaw and that is he doesn’t respond to emails efficiently, if at all.

Remember your thoughts may  be incorporated into a powerpoint presentation so they don’t have to be elaborate compositions. Thanks in advance and I look forward to getting your photos and thoughts. He will incorporate as many as possible into his talk. If you can do this quickly that would be great, but think about it and send it to me no later than April 4. 

Laura K.

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MSNewsToday Press Release 'MS Champions' Gala on April 22 in Florida

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   MS Views and News to Host 'MS Champions' Gala on April 22 in Florida
Read about the 2nd annual Champions Tackling MS Gala, a fund-raising event hosted by MS Views and News, taking place Saturday, April 22, in Davie, Florida.

MS Views and News, a non-profit multiple sclerosis (MS) advocacy organization, will host its second annual Champions Tackling MS Gala on April 22, with money raised going to support live educational events, community resources, and services intended to help improve the quality of life for people with MS.
The Saturday event at the Signature Grand hotel in Davie, Florida, starts at 6:30 p.m.
The evening kicks off with an open bar cocktail reception at which guests are encouraged to mingle and place bids for a silent auction. The reception will be followed by a dinner in the ballroom. After dinner and live auctions there will be an award ceremony, with the event capped by an evening of dancing to the sounds of Solid Brass.

Lauren Pastrana of CBS Miami will emcee this year’s gala. The evening’s honoree guests will be Dr. Aaron Boster, MD, a neuroimmunologost and director of the Ohio Health MS Center, and the former dentist turned fine art photographer Jon Evan Glaser, who was forced to retire from dental practice due to MS complications. Boster and Glaser’s respective advocacy and commitment to being Champions Tackling MS align with the evening’s theme.
Founded in 2008, MS Views and News is dedicated to the global collection and distribution of information concerning MS and provides a range of resources for the MS community locally, nationwide and worldwide.
Through partnering relationships, MS Views and News provides education, advocacy and service to empower and enhance the lives of people with MS, their families and caregivers. In 2016, it was able to facilitate more than 52 live educational programs and launched a local wheelchair donation program.
Stuart Schlossman
Stuart Schlossman
“MS Views and News has made it our focus to provide impactful education, information and services globally. The organization serves thousands of individuals via live educational programs, archived educational video recordings, e-newsletters, Wellness Workshops, a toll free helpline and Social Work services, all free of charge to the public,” said Stuart Schlossman, MS Views and News founder and president, in a press release provided to Multiple Sclerosis News Today. Schlossman has MS.
Tickets to attend the Gala are $100.00 per person ($95.00 if paid by March 29), or $1,000.00 for a table of 10. Sponsorship opportunities are available, including $20,000.00 Diamond Sponsor, $10,000.00 Gold Sponsor, $5,000.00 Silver Sponsor, and $2,500.00 Sponsor.
For ticket purchases and information on becoming a sponsor, contact  Jennifer at 786-514-3055 or, or visit:

6 Common Symptoms of Chronic Fatigue

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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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Thursday, March 16, 2017

Biomarkers: The Future of Multiple Sclerosis Treatment?

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Researchers have unveiled studies that show the potential for biomarkers to identify certain types of MS, and perhaps the best treatments. 


Ancestry information, products for gut health, paternity tests.

One can pretty much mail order anything these days.

There are even companies that will analyze your blood without a doctor’s order. They provide blood chemistry and wellness tests based on the results. 

How long before a blood sample can provide information on what type of multiple sclerosis (MS) someone has, and also how to best treat it? 

Not long if clinical studies continue to show positive results with biomarkers and the potential benefits for people with MS.

Deciphering ‘snowflakes’

Biomarkers are genomic, metabolic, or lipidomic. They are used with blood tests, DNA/RNA sequences, and lipid analyses.
Recent research has shown biomarkers can be used to define MS in people, pinpoint the type of MS someone has, and provide possible hints to treatment and progression.
Biomarkers are not new.
The lumbar puncture that many people with MS receive will show a level of certain proteins, which can signal the presence of MS and help with diagnosis. But it is not enough.
MS is as unique as a snowflake. No two cases are the same, making diagnosis and treatment challenging.
If doctors could easily identify the illness, define the type of MS one has, and customize the treatment accordingly, then the patient’s chance of a healthier life is significantly higher.
In addition, people with MS could save money while fighting progression with the best medicine for their unique situation.

MS Views and News
Providing educational information, resources and services for those affected by MS, globally
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Wednesday, March 15, 2017


Join us on April 22nd 2017 as we celebrate Champions Tackling MS

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Researchers make major brain repair discovery in fight against Multiple Sclerosis

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March 14, 2017
Queen's University, Belfast
Scientists have discovered that specific cells from the immune system are key players in brain repair – a fundamental breakthrough that could revolutionize the treatment of debilitating neurological disorders such as Multiple Sclerosis (MS)
Queen's University Belfast scientists have discovered that specific cells from the immune system are key players in brain repair -- a fundamental breakthrough that could revolutionise the treatment of debilitating neurological disorders such as Multiple Sclerosis (MS).
The research study, led by Dr Yvonne Dombrowski and Dr Denise Fitzgerald at the Wellcome-Wolfson Institute for Experimental Medicine at Queen's University Belfast, is being hailed as a landmark study in unravelling the mysteries of how the brain repairs damage. This is crucial in the fight against MS, which affects 2.3 million people world-wide and over 4,500 people in Northern Ireland.
Read more

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Providing educational information, resources and services for those affected by MS, globally

Clinical Test of Rex Robotic Device as Rehabilitation Aid for MS Patients Starting in UK

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Clinical Test of Rex Robotic Device as Rehabilitation Aid for MS Patients Starting in UK
A clinical test of whether bionic robotics can improve mobility in people with relapsing or progressive forms of multiple sclerosis (MS) and considerable disability is now recruiting participants, after being approved by the U.K. National Health Service’s Health Research Authority (HRA) ethics committee.

The trial, called RAPPER 3 (Robot Assisted Physiotherapy Exercises with Rex III), will be conducted at the Canterbury site of the East Kent Hospital’s University Foundation Trust (EKHUFT), and is expected to begin the first of 10 patient evaluations on April 19.
It will evaluate the feasibility and safety of using Rex Bionics‘s REX robot exoskeleton device as a hands-free rehabilitation aid for people with MS who have moderate to severely restricted mobility. The trial aims to have each patient complete a four-week “transfer, stand, balance, and walk” rehab program, and demonstrate better strength, improved balance and balance-related skills, and walking ability. Secondary trial goals include improved Multiple Sclerosis Walking scale (MSWS-12) and the Multiple Sclerosis Impact scale (MSIS-29) scores.

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Tuesday, March 14, 2017 09:54PM
SAN FRANCISCO (KGO) -- On a good day, watching Sarah Warto climb the stairs you might not guess that she suffers from multiple sclerosis. But shortly after the birth of her daughter, 2.5 years ago symptoms kicked in.

"It effected my ability to walk. That was probably the biggest issue for me because as the mother of a newborn child all I wanted to do was get up and run around after her," Warto said.

Now, she's waiting on the potential approval of a new drug that could change the course of her disease, and possibly her life.

Stephen Hauser, M.D. of UCSF helped oversee testing of the drug.

It was developed by Bay Area-based Genentech, and it's clinical name is Ocrelizumab.

Hauser says it was able to disrupt symptoms in the less severe form of multiple sclerosis, called relapsing. "Ocrelizumab has been able to nearly completely stop disease activity in people with relapsing and remitting forms of Multiple Sclerosis," Hauser said.

He says it was even able to reduce symptoms from the much more damaging form of the disease called progressive, which can ultimately rob patients of the ability to move on their own. "So for people with relapsing MS this is spectacular news. And for people with progressive MS the door is finally open," Hauser said.


MS Views and News
Providing educational information, resources and services for those affected by MS, globally
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Barriers in the Accessibility and Continuity of Health-Care Services Among People with Multiple Sclerosis: A Literature Review

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Barriers in the Accessibility and Continuity of Health-Care Services Among People with Multiple Sclerosis: A Literature Review

Chung-Yi ChiuPhD, CRCMalachy BishopPhD, CRCJJ PionkeMA, MSIDavid StrauserPhD, CRCRyan L. SantensMPH, MSW
From the University of Illinois at Urbana-Champaign, Champaign, IL, USA (CYC, JJP, DS, RLS); and University of Kentucky, Lexington, KY, USA (MB).

Correspondence: Chung-Yi Chiu, PhD, CRC, Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign, 1206 S. Fourth St., Champaign, IL 61820; e-mail: .
Background: Individuals with multiple sclerosis (MS) face a range of barriers in accessing and using health-care services. The aim of this literature review was to identify specific barriers to accessing and using health-care services based on a continuum of the health-care delivery system.
Methods: Literature searches were conducted within the following databases: PubMed, PsycInfo, CINAHL Nursing Literature, and Web of Science. The following terms were searched as subject headings, keywords, or abstracts: health care, access, barriers, physical disability, and multiple sclerosis. The literature search produced 361 potentially relevant citations. After screening titles, abstracts, and citations, eight citations were selected for full-text review.
Results: Health-care barriers were divided into three continuous phases of receiving health care, namely, before, during, and after visit phases. In the before-visit phase, the most commonly identified barrier was transportation. In the during-visit phase, communication quality was the major concern for individuals with MS. In the after-visit phase, discontinued referral was the major barrier encountered by individuals with MS.
Conclusions: There are multiple interrelated barriers to accessing and using health-care services along the health-care delivery continuum. These range from complex and long-recognized barriers that will likely require extended advocacy to create policy changes, to issues that can and should be addressed through relatively minor changes in health-care delivery practices, improved care coordination, and increased provider awareness, education, and responsiveness to patients' needs.

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The Relationship Between Fatigability and Perceived Fatigue Measured Using the Neurological Fatigue Index in People with Multiple Sclerosis

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Mayis AldughmiPTJared BrucePhDCatherine F. SiengsukonPT, PhD
From the Department of Physical Therapy and Rehabilitation Science, University of Kansas Medical Center, Kansas City, KS, USA (MA, CFS); and Department of Psychology, University of Missouri-Kansas City, Kansas City, MO, USA (JB).
Correspondence: Catherine F. Siengsukon, PT, PhD, University of Kansas Medical Center, 3901 Rainbow Blvd., Mail Stop 2002, Kansas City, KS 66160; e-mail: .
Background: Understanding the relationship between perceived fatigue and performance fatigability could lead to more effective interventions to manage multiple sclerosis (MS)–related fatigue. However, the relationship between self-perceived fatigue measured using the Neurological Fatigue Index (NFI-MS) and performance fatigability in people with MS is unknown. Therefore, the aim of the study was to explore the relationship between the NFI-MS and performance fatigability in people with MS.
Methods: Fifty-two participants (mean age: 46.8 ± 10.1) completed the study. Three measures of performance fatigability were utilized: percent change in meters walked from the first to last minute of the 6-Minute Walk Test (6MWT), percent change in force exerted from the first to last trial on a repetitive maximal hand grip test, and Response Speed Variability (RSV) on the Continuous Performance Test (CPT). Perceived physical and cognitive fatigue were measured using the NFI-MS. The state level of fatigue was examined immediately before and after performing the fatigability measures using a 1-item Visual Analogue Fatigue Scale (VAFS).
Results: Out of the three performance fatigability measures, only the attentional task (RSV) was significantly associated with the NFI-MS physical domain (r = .326, P = .020) and NFI-MS cognitive domain (r = .276, P = .05). Participants demonstrated significantly higher state levels fatigue after performing all the performance fatigability measures (P ≤ .001).
Conclusions: The NFI-MS and the performance fatigability measures utilized in this study are easy to administer. We encourage a wider use of those measures in clinical and research settings for a comprehensive assessment of MS-related fatigue.

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Let’s Compare MS Symptoms, and How We’re Handling Them

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Let’s Compare MS Symptoms, and How We’re Handling Them

We all know, because we have heard it so many times, that MS is not the same for everyone — that no two people have exactly the same combination of symptoms.
That got me thinking the other day (pause for call-outs or derision) about the number of symptoms there are, and which ones I have to deal with.
As a start, I headed over to the website of the U.S.’s National MS Society. I found an imposing list of 22 symptoms. But how many affect me? What do I do about them? And how do you manage yours?
Fatigue – Oh, yes, this can knock me off my feet. But since moving to Spain, it hasn’t affected me. It might be the more relaxed lifestyle.
Walking (Gait) Difficulties – Probably the most visible part of the disease for me. My left side is affected, making walking difficult. I am pleased to say that my Vitamin D supplement appears to be helping me around the house and walking short distances. Fewer falls, too. Over longer distances, I still need a wheelchair — the great folding lightweight power chair I bought.
Numbness or Tingling – Yes, mostly in my left hand. I cannot use that hand to hold anything.
Spasticity – Having looked up the definition, I seem to have been spared this.
Weakness – Yes, mainly in my left knee but, again, apparently improving with Vitamin D.
Vision Problems – No, fortunately nothing yet.
Dizziness and Vertigo – A difficult one to answer, but I’ll try to explain. I rarely suffer from dizziness, but my balance depends on being able to see around me. In darkness, I am much more likely to lose my balance.
Bladder Problems – Yes, both infrequency and urgency. These are controlled mainly by medication, but if I’m going where public restrooms may be difficult to find, I wear a pad to be on the safe side.
Sexual Problems – Perhaps the most difficult symptom for many to discuss. Ok, so here goes: Yes, I have sexual problems linked with erectile dysfunction. But I still have a full and fulfilling sex life. How? Easy, Lisa and I talk. We understand each other’s needs and we both end up happy.
Bowel Problems – That’s me, but no risk of incontinence here. Constipation is my problem. I take laxatives to overcome this.
Pain – Fortunately, no. Nothing beyond aches and pains that can affect everyone.
Cognitive Changes – Not in the slightest. Just as alert, aware, and understanding as ever.
Emotional Changes – No. I am emotionally stable, calm, virtually worry-free, and happy.
Speech Problems – None, apart from an English accent.
Swallowing Problems – None. You serve it, I’ll swallow it (as long as I like it).
Tremor – None.
Seizures – None at all, but I take a daily dose of anticonvulsive medication because I also have epilepsy. Even so, no seizure for more than 40 years.
Breathing Problems – Yes, shortness of breath if I try to do too much. I find that sitting down gets me going again soon.
Itching – Occasionally, particularly after going to bed.
Headache – Extremely rarely, probably less frequently than many people without MS.
Depression – Never! Life is worth living, so live it.
Hearing Loss – Eh, what? No, seriously, Lisa says I have bionic hearing.

So, how are you getting along with your symptoms?
SOURCE: Multiple Sclerosis News Today

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