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Saturday, February 14, 2015

For those affected by Multiple Sclerosis living in or near Indianapolis, IN - this is an educational program to attend, learn and share the valuable resources which you will gain from this event

RSVP to attend this 
MS educational Program
by clicking the link shown below

TO attend, click 
Select the Indianapolis program
and then Register


If affected by MS and living in or near Chicago, IL - This is a program to attend and gain knowledge of Multiple Sclerosis

RSVP for this program in Chicago

New Multiple Sclerosis Drug May Repair Nerve Demyelination

YES - the Research of this medication has been blogged on our site in the past, but now it appears that it is getting closer to reality...

Read on.........

Thursday, January 8, 2015 
- Data Offer Evidence of Proof of Biology in Acute Optic Neuritis -
- Phase 2 Multiple Sclerosis Trial Ongoing, Data Expected in 2016 Will Further Define Clinical Potential -
CAMBRIDGE, Mass. – Biogen Idec (NASDAQ: BIIB) today announced top-line results from the Phase 2 acute optic neuritis (AON) RENEW trial in which treatment with anti-LINGO-1 showed evidence of biological repair of the visual system. Anti-LINGO-1 demonstrated an improvement in the study’s primary endpoint, recovery of optic nerve latency (time for a signal to travel from the retina to the visual cortex), as measured by full field visual evoked potential (FF-VEP), relative to placebo. The study showed no effect on secondary endpoints, including change in thickness of the retinal layers (optic nerve neurons and axons) and visual function, as measured by spectral domain optical coherence tomography (SD-OCT) and low contrast letter acuity, respectively.
AON damages the optic nerve, causing loss of the myelin sheath and axonal injury, and may result in loss of visual function. AON is considered a good clinical model to measure the hypothesized mechanisms of action of anti-LINGO-1, remyelination and neuroprotection. RENEW was designed to study anti-LINGO-1’s ability to enable repair of an optic nerve lesion via axonal remyelination following the onset of a first episode of AON. RENEW is part of the anti-LINGO-1 Phase 2 clinical development program, which includes the SYNERGY trial in multiple sclerosis.
“We believe the RENEW results are encouraging, as this is the first clinical trial to provide evidence of biological repair in the central nervous system (CNS) by facilitating remyelination following an acute inflammatory injury,” said Alfred Sandrock, M.D., Ph.D., group senior vice president and chief medical officer at Biogen Idec. “We look forward to the SYNERGY results in 2016 to further advance our understanding of this molecule in MS, including a full dose response. The totality of the data from the two Phase 2 studies may provide us with a clearer understanding of anti-LINGO-1’s clinical potential.”
RENEW studied the effects on remyelination by measuring the latency of nerve conduction between the retina and the visual cortex in the brain using FF-VEP. The primary endpoint measured FF-VEP latency for the affected eye at week 24 compared to the unaffected fellow eye at baseline. Results demonstrated a 34 percent improvement (p=0.0504) in the recovery of optic nerve latency compared to placebo in the per-protocol population. The analysis of the intent-to-treat (ITT) population, which includes patients in both arms who did not complete the study, showed a positive trend but did not reach statistical significance.
Anti-LINGO-1 was generally well tolerated.

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Thursday, February 12, 2015

Stem Cell Tx May Cut New Brain Lesions in MS

Provided by: Cherie C. Binns RN BS MSCN

Multiple sclerosis (MS) patients who had autologous hematopoietic stem-cell transplantation had significantly fewer new lesions on MRI than those on mitoxantrone, Italian researchers found.

In a randomized, controlled trial, CD34-positive hematopoietic cell transplant reduced the number of new T2 lesions by 79% compared with mitoxantrone over a 4-year study period (P=0.00016), Giovanni Mancardi, MD, of the University of Genova in Italy, and colleagues reported in Neurology.

The therapy also reduced gadolinium-enhancing lesions and annualized relapse rate, but there was no difference in progression of disability, although the study was not powered to look at the latter finding, the researchers noted.
"More research is needed with larger numbers of patients who are randomized to receive either the stem-cell transplant or an approved therapy, but it's very exciting to see that this treatment may be so superior to a current treatment for people with severe MS that are not responding well to standard treatments," Mancardi said in a statement.

The ASTIMS study enrolled 21 patients from seven centers in Italy and Spain from 2004 to 2009 who had relapsing-remitting or secondary progressive MS. They were randomized to intensive immunosuppression followed by either mitoxantrone or autologous hematopoietic stem-cell transplantation every month for 6 months.

The intensive immunosuppression regimen involved mobilization with cyclophosphamide and filgrastim, conditioning with carmustine, cytosine arabinoside, etoposide, melphalan, and anti-thymocyte globulin.

The mean age at transplantation was 35.5 years, and the median Expanded Disability Status Scale (EDSS) score at baseline was 6.

ASTIMS was designed as a phase III study, but became a phase II trial with a primary laboratory endpoint -- the cumulative number of new T2 lesions 4 years after randomization -- "when it was clear that the number of enrolled patients was lower than expected," the researchers wrote.

Overall, Mancardi and colleagues found fewer T2 lesions in the stem-cell group than in the mitoxantrone group during follow-up at a median of 2.5 lesions versus a median of eight lesions (rate ratio 0.21, 95% CI 0.10-0.48, P=0.00016).
This effect was evident in the first year and was sustained through 4 years of follow-up, they reported. It was also maintained in all sensitivity analyses.

It also resulted in complete suppression of active inflammatory lesions as measured by gadolinium-enhancing lesions, with no stem-cell patients having new lesions compared with 56% of those on mitoxantrone (P=0.029).

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Tuesday, February 10, 2015

Click Here to Access the Virtual MS Treatment Simulator from CMSC

       Learn more of these Virtual Programs by clicking here

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Monday, February 9, 2015

BRING IT ON -- A Special Multiple Sclerosis Q&A program from Davie, Florida

Program Date: February 7, 2015

This Q&A was made possible by all the questions brought by the MS Patients and Caregivers that attended this program as well as the many that sent their questions by email or via social media.

Questions ranged from topic relating to MS medications, Symptoms like cognition, Alternative Therapies and many concerning Social Security disability law as well.

Watch this program at your leisure. It is approx. 2 hours in length but here, you can pause at anytime and resume when you can.

PLEASE share this video with others that have MS, caregivers and healthcare providers. 

This MS Views and News, MS Q&A program was well received and appreciated, as mentioned by many as they left for the day..... 

To know more of MS Views and News and the educational programs we provide and to have access to our every-other -week e-Newsletters, then please click - to opt-in

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re: Supplemental Security Income (SSI)

“Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes):

·         It is designed to help aged, blind, and disabled people, who have little or no income; and It provides cash to meet basic needs for food, clothing, and shelter.”

The federal SSA website is:

Per our conversation, under the “benefits” tab, you can click on Supplemental Security Income (SSI):

Under the “benefits” tab, you can click on Supplemental Security Income (SSI):

You can learn more about what the SSI program covers via:

This link addresses the benefits that adults and/or children with a disabling condition might be eligible. But, in general,

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MS News from New Zealand: Experimental drug containing tiny fragments of teenage acne bacteria trialled on MS patients

A drug trial is offering hope to Victorians suffering from multiple sclerosis.
A drug trial is offering hope to Victorians suffering from multiple sclerosis.

VICTORIAN patients with multiple sclerosis are trialling an experimental drug containing tiny fragments of teenage acne bacteria.

The potential new treatment for the disease is derived from the same bacteria that causes acne in teenagers and aims to stimulate responses in the immune system.

Most patients with relapsing-remitting MS go on to develop secondary progressive MS where there are not relapses or remission.

Principal investigator Dr Bob Soh, from the Nucleus Network in Melbourne, said there are currently no effective treatments for secondary progressive MS.

Already eight Victorians are signed up to the phase 2B trial of the drug MIS416, which will determine if the drug can improve their symptoms.

Unlike other drugs that use a man-made version of the substance, MIS416 takes the bacteria and puts it through a manufacturing process that leaves behind just the microparticle required to elicit the immune reaction against MS.

Trial participants are given weekly infusions of the drug or a placebo.

But Dr Soh said that at the end of a 52-week trial period scientists would “unblind the trial” giving those who received the placebo the option of receiving the medication.

Trials of the drug in New Zealand have shown modest improvements in symptoms.

Stephen Mudgway, 51, has been on the drug for three years. “Before I was on the drug I was sleeping for 18 hours a day, but it has given me my life back,” Mr Mudgway said.

READ More here

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Sunday, February 8, 2015

NMSS - LIVE WEBCAST on March 4, 2015 - Finding Answers for Progressive MS

On Wednesday, March 4, join a panel of experts for a live nationwide webcast on “Finding Answers for Progressive MS.”

Wednesday, March 4, 2015
2 – 3 p.m. Eastern (1 – 2 p.m. CT, Noon – 1 p.m. MT, 11 a.m. – Noon PT)
To register for the live webcast, please click here.
Topics include:
  • Updates on Progressive MS research
  • Advancements in Progressive MS treatment, symptom management and rehabilitation
  • Progress made by the Progressive MS Alliance
Moderator: Kate Milliken, founder, Milligrace Productions. Kate has been living with MS since 2006
Panelists include:
Dr. Alan Thompson, University College London Faculty of Brain Sciences, UK
Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer for the National MS Society
*Additional panelists will be posted here soon.


* For people who cannot participate in real-time, we will post the recorded version with transcript for viewing shortly after the event.

About Multiple Sclerosis

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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Multiple Sclerosis Icebergs: What’s Going on in 90 Percent That Lies Beneath?

Published Feb 6, 2015
At a meeting a few months ago, someone referred to multiple sclerosis as an “iceberg disease.” I jotted down a note to help me remember to write a blog about that idea. In shuffling through a file this week I ran across that note and I thought about it for a while.
Many analogies of an iceberg’s hidden dangers have been put forward due to the relative physics of frozen fresh water versus salt water. The density of ice is 0.92 grams/milliliter; of water, 1.0 gm/ml; and of salt water, 1.03 gm/ml. Therefore, ice has nine-tenths, or 90 percent, of water’s density.  In other words, only 10 percent of an iceberg is above water.  The other 90 percent lies below the surface.
There are research notes looking at the difference between clinical and sub-clinical MS relapsesthat refer to them as MS icebergs. This research deals with the possible dangers of the NEDA (no evident disease activity) standard of medication effectiveness.  There may be no “above the water evidence” of disease activity but below the surface, damage may be harder to see.
Far below the visible surface of the disease, some grey- and white-matter lesions may not even be observed by high-powered MRI machines. And brain atrophy is one of the very scary words we hear in relation to advanced MS.  All of these things can be occurring out of sight.
I also think that the MS iceberg is a good way of describing our symptoms.
We’ve heard some of our symptoms called “invisible.” Sometimes people just don’t believe we have MS because they can’t see what we’re experiencing.  Even if we have symptoms that telegraph to the world there is something “wrong” with us or we have disclosed our condition, no one can know the whole story of what we’re experiencing.
While many silent exacerbations can be detected by MRI, not all of them are, and we are probably not aware of them happening as they don’t present themselves clinically.  So there is activity below the surface that can’t be detected and we can’t feel… but it’s still there.
The MS iceberg isn’t going away, and there’s nothing I can do about it.  I guess it’s just a little bit comforting that my MS isn’t the only dangerous thing in the world only showing 10 percent of itself to the light of day.
Wishing you and your family the best of health.

Don’t forget that my book, Chef Interrupted, will be available on March 1, but you can pre-order your copy now on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

Article Source

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Rehabilitation and Habilitation Services and Devices

Information sourced and provided  to us by Jennifer Falk, MSW, CPHM, in Miami, Florida
This fact sheet is intended to help Navigators answer specific questions that people with disabilities might ask about rehabilitation and habilitation services and devices benefits when they are considering buying health insurance through the Marketplace

Q1. What do I need to know about rehabilitation and habilitation services and devices?

A. Health plans available through the Marketplace must offer rehabilitation and habilitation services and devices as essential health benefits. These services speed your recovery after an illness or injury and reduce the likelihood that you will need to be hospitalized again. They also might help to slow the progression of your disability or enable you to gain new functional or communication skills. They also help to improve your health, strengthen your ability to participate in the community, and maintain function long-term. Equally important, such services can improve the likelihood that you can return to work and maintain a good quality of life.
These categories of services and benefits are grouped together here and also in federal law because they are interdependent and might be used at the same time to ensure recovery or to meet a specific clinical or functional goal. For example, an occupational therapist might help a person who wishes to learn a new way of dressing because they have a new wheelchair with arm rests that are harder to grip than those on the older chair. At the same time, the person could be working with a physical therapist to maintain upper mobility functions in muscles that were overused with the older chair, thereby prompting the need for a new chair. Rehabilitation and habilitation devices and services often complement one another as components in a comprehensive treatment plan.

Q2. What are examples of rehabilitation services?

A. Rehabilitation typically includes services you might need to regain function after an injury or illness and include acute clinical care in the hospital or treatment in a rehabilitation hospital or residential rehabilitation facility. Services might also include treatment you might need from a day treatment program, outpatient clinic, other outpatient setting, or that a home health agency provides. Rehabilitation benefits covered by a health plan might also pay your specialist physician to manage your care over time. Examples of covered services you might need include physical, occupational, and speech-language therapy, cognitive therapy, recreational therapy, and psychological and behavioral evaluation.

Q3. What are examples of habilitation services?

A. Habilitation focuses on helping you or a family member attain, keep or improve skills and functioning for daily living. Examples include therapy for a child who is not walking or talking at the expected age or teaching adults with developmental disabilities the fine motor coordination required to groom and dress themselves. Habilitation services include physical, occupational, and speech-language therapy, various treatments related to pain management, and audiology and other services that are offered in both hospital and outpatient locations. The benefits of these therapies can include, for example, improved socialization skills, which reduces developmental delays for children with developmental disabilities. Adults and older people with certain disabilities can also benefit, for example, from therapies that prevent muscle loss and thus mobility, or that increase fine motor coordination so that independent living tasks such as dressing and bathing are made easier.

Q4. What are examples of devices?

A. You or a family member might also need certain equipment so you can benefit from habilitation and/or rehabilitation therapy services or that meet other clinical or functional needs. Examples include walkers, canes, and crutches, glucose monitors and infusion pumps, prosthetics and orthotics, low vision aids, augmentative communication devices, and complex rehabilitation technologies such as motorized wheelchairs and assistive breathing machines. These are devices that you might need to aid in your recovery after an injury or illness, maintain function or prevent its loss, sustain your health or help you gain new skills for independence.

Q5. Does health insurance sold through the Marketplace cover rehabilitation, habilitation and devices?

A. Although individual and small group health plans sold either inside or outside the Health Insurance Marketplace must offer rehabilitation and habilitation services and devices, the scope of the benefits available will vary from plan to plan. For example, in order to determine what and how many therapy benefits are offered by plans, states have picked as a model a typical plan sold in that state. Plans offered in the Marketplace must provide benefits substantially equal to those provided in their state’s model plan.
Here are examples of therapy benefits from a few of those model plans:

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Traveling with MS: What You Need To Know

By Ashley Ringstaff—February 6, 2015
As most of you may have seen or heard, I tend to travel a bit every year to attend MS Conferences, on behalf of MSWorld’s Conference Center. I started doing this for ECTRIMS 2011 in Amsterdam, which was October 2011.
When I look back to what happened on my first time traveling, especially international trips, to how I prepare and travel now… there is a HUGE difference.
It was pretty much, learn from previous experience(s) for me. From 2011 to now, I’ve also traveled while being on different Disease Modifying Therapies for MS. I’ve also traveled during easy times with my MS and at times when my MS impacted my life a bit more than “normal”.
So I have sort of a list I go by when preparing for travel, whether it’s by car or plane, which I wanted to share with everyone.
I don’t just travel with one bag for clothes, etc. I have a bag/suitcase that I use for my clothing, shower bag, etc., but I also have a separate bag that I have with me at all times. This bag isn’t apart of my ‘checked bag’ at the airport and it’s not in the back of my SUV (or trunk if you have a car).
So for my bag I keep with me, I include:
  • Medicine
    • This includes medicine I might need while traveling, as well as any medications I could possibly need. You never know when you might need it and having it easily accessible is a must.
      • Make sure that you have enough medication on all of your prescriptions, so that you don’t run out while you’re away.
    • Medical Card/Information
      • When I’m traveling, I usually use a different wallet/purse. So I make sure to have a Medical Information ID Card in my wallet/purse, but also another one in a front pocket on my bag that I carry. This is just in case of an emergency, but you never know when it could come in handy. It’s good to be overly prepared for any emergency situations.
        • I also have the “American Medical ID” Necklace & Charm… this is also just in case.
      • Hand Sanitizer
        • I’ve talked about this in my blog, “Tis’ the Season”… I don’t want to be miserable on my trip because I picked up somebody’s nasty germs and got sick. Use it often!
      • Travel Pillow/Blanket
        • Yes, I know that certain airlines offer pillows and blankets, but do you know where that stuff has been? I don’t… and I don’t want to find out. So I bring my own, thin/comfy blanket, so it doesn’t take up too much room.
      • Electronics (and chargers)
        • Is it a pain to keep this with me at all times? Yes it can be. But I don’t want my electronics to be left in my checked bag and tossed around during transfer. I do have a rolling bag for traveling by plane, this way I’m not carrying a heavy bag on my shoulder. Also, having my computer/iPad & phone w/ me at all times, I know I won’t get bored.
          • Mind you, I have a Macbook Air & iPad Mini, so they aren’t very heavy to begin with.
        • Folder for Travel Information
          • I always have a printed-paper of my hotel confirmation, flight confirmation, etc. This way I don’t have to search for this information in my e-mails, etc.
            • Apps on my phone: I have a lot of travel apps, this way I have a lot of the information I might need on my phone.
          • Cane
            • In the past, I’ve had to travel with a cane. The first time I did this, it was just a normal cane that you see at your local pharmacy. That was BIG. I now have a cane that can be folded, this way I can put it away when I don’t need it. (By the way, I don’t just want to have a plain looking cane, I like it to have a design… so if you’re like me, look up fashionable canes on the internet. You can also check out a list in MSWorld’s Resource Center.)
Now, when it comes to what I include in my suitcase… I know I’m a girl, so you’re thinking oh goodness; this is going to get complicated. Now, my first time traveling, there was a lot of stuff in my luggage but I’ve come to figure out some things that make it a bit more organized and easier.
You know those infomercials you see on the TV that are usually VERY annoying or pointless?? Well they aren’t all like that. I got me some “Space Bags” to use when I’m going to be gone for a while and need more clothes than usual. Using the vacuum packed bags really helps make room in my suitcase for more clothing. But this can be a problem with the ‘weight limit(s)’ that some airlines have, so be sure to check what your limit is. I have one of those ‘luggage scales’ now, so I don’t have to pay overage fees, or move things around to different bags. (Now, I didn’t actually order the “Space Bags” from TV… I found that my local store had a similar product, so check that out!)
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Studying Vision Impairments in Multiple Sclerosis

By Rachel Lutz | February 06, 2015

 Vision impairments due to multiple sclerosis (MS) is common but an under studied area, according to a report from a recent international meeting of investigators published in Brain. - 

Researchers from both the United States and the United Kingdom reported on an international meeting of investigators aiming to develop and study visual outcomes in MS. The meeting, held in November 2013 in Dublin, Ireland, was attended by over 60 investigators in the realms of MS, neuro ophthalmology, clinical trial design, and evaluation of clinical outcome measures from Europe, North America, Asia, and Australia.

 First, the researchers examined optic neuritis associated with MS, which is common among patients. The symptoms are described as several days of visual loss and, often, peri orbital pain exacerbated by eye movements. Complete vision loss is uncommon, however. Improvement of vision takes place typically after about 1 month following symptom onset. About 95 percent of patients achieve 20/40 high contrast visual acuity (HCVA), although many patients experience decreases in vision related quality of life (QOL) after 5 to 8 years. There are short term treatments, typically intravenous methylprednisolone, which can speed recovery, but nothing offers long term benefits. Optical coherence tomography (OCT) offers a good option, the researchers believe, in studying therapies for neuroprotection and repair in MS.  

The attendees also believed that patient reported outcomes are equally if not more important than clinical outcomes in measures of visual function, structure, and electrophysiology in their relation to patient QOL. The most common test used for vision specific QOL, the NEI-VFQ-25, are reduced in MS patients, so a 10-item supplement was introduced. However, there have still been reduced scores reported for MS patients. Attention must also be paid to fatigue during study visits, according to the authors.

“Ideally, visual measures used in MS clinical trials should be standardized, reliable, practical, tolerated by study participants, and applicable for both adult and pediatric populations,” the authors wrote. “Aspects include visual function, vision specific QOL, structural markers, and electrophysiological tools.”  

More comprehensive studies of visual dysfunction as secondary outcomes in clinical trials are needed, and particularly for progressive MS, the attendees determined. But more trials which aim to improve visual outcomes following optic neuritis are needed, as well.

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