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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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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, January 25, 2014

Multiple Sclerosis Annual Conference Presents the Latest on Diagnosis, Patient Care & Research

Leading conference in North America, 2014 Cooperative Meeting of CMSC and ACTRIMS, offers healthcare professionals unprecedented learning, continuing education credits, and networking opportunities on multiple sclerosis diagnosis, treatment, research, and on-going patient care.


Stu's Views & MS News / MS Views and News, will be displaying at this program


Hackensack, NJ (PRWEB) January 24, 2014


The leading educational, training, and networking organization for MS healthcare professionals and researchers, The Consortium of Multiple Sclerosis Centers (CMSC) (http://www.mscare.org) announces its 28th Annual Meeting taking place May 28-31, at the Hilton Anatole in Dallas, TX. In cooperation with the American Committees for the Treatment and Research of Multiple Sclerosis (ACTRIMS©) this is the only event in North America that provides health care professionals, from a wide range of disciplines, with the latest information, treatment advancements, and research in multiple sclerosis.
Conference delegates will learn about cutting edge research findings, the latest clinical advances in the effective comprehensive management of the disease and emerging care issues that will enhance their knowledge and skills. The educational program includes a robust agenda of lectures, workshops, symposia and roundtables and provides CME for physicians as well as continuing education credits for nurses, pharmacists, psychologists, rehabilitation professionals, and social workers. Several independently supported satellite programs will also offer additional accredited learning opportunities in multiple sclerosis.
“Multiple sclerosis presents the health care professional with daily challenges—the variable course of the disease, complex care issues and ensuring optimal care within an evolving healthcare environment,” said June Halper, Chief Executive Officer, CMSC. “Our Annual Meeting will provide the essential elements for their MS toolbox and enhance their knowledge and care to better serve patients, families and colleagues.”
The Annual Meeting focuses on the comprehensive care model and covers: basic and clinical research; disease modifying treatments and new and emerging therapies; epidemiology, genetics, and epigenetics; symptomatic care, immunology and pathophysiology of multiple sclerosis; neuroimaging and biomarkers; rehabilitation; psychosocial issues; multiple sclerosis collaborative care; gender specific concerns; advocacy issues and quality of life strategies.
Highlights of the Annual Meeting include:



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Friday Feedback: Vitamin D -- the MS Magic Bullet?

January 24, 2014

This week, Friday Feedback takes a second look at a reported correlation between vitamin D and slower disease progression in multiple sclerosis patients.
We reached out to a diverse group of physicians by email and asked them to respond to the following question:
On the strength of these observational data, how would you use these findings in the clinical management of your MS patients?
The participants this week:
Cherie C. Binns, RN, an independent multiple sclerosis-certified nurse based in Wakefield, R.I.
Marian L. Evatt, MD, MS, Department of Neurology, Emory University School of Medicine
Robert Fox, MD, an MS specialist in the Mellen Center for Multiple Sclerosis at the Cleveland Clinic
J. William Lindsey, MD, professor of neurology at the University of Texas Health Science Center at Houston (UTHealth) Medical School and a member of the Mischer Neuroscience Institute at Memorial Hermann-Texas Medical Center
Eva-Maria Maida, MD, professor and chair, department of neurology, Evangelical Hospital Vienna, Austria
Anthony T. Reder, MD, professor of neurology with a focus in multiple sclerosis, The Committees on Neurobiology and Immunology, University of Chicago Medicine

READ COMPLETE Article found here
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Thousands of Multiple Sclerosis patients are getting worse each day

Thousands of Multiple Sclerosis patients are getting worse each day, when currently used medications are not working for them or their body refuses to accept the medication.

Another Option is needed and this Option Should be Lemtrada

The FDA on December 30, 2013 Denies the use of Lemtrada for MS Patients. THIS was A sad day for people with more active Multiple Sclerosis.

Lemtrada has been approved worldwide, but not good enough for us it seems, in the USA.

We are more than 400,000 strong (living with MS) in the USA
WE NEED YOUR VOTE to give another OPTION to those that Can benefit from this medication; hoping to keep them from severe disability.

NEW CONTACT INFORMATION --  (SEE BELOW)

YES, WE NEED YOUR VOTE.
Also we need you to write directly. WE NEED YOU TO send emails. –
We need this request to go Viral --

• Let us FLOOD the OFFICE of this FDA committee with emails, WITH the information shown above.
• Please copy and paste what is typed and attach your name to that email and then send to: 

submit all Petitions to the new contact information showing below:


Janet Woodcock, MD
Director, Center for Drug Evaluation and Research
Food and Drug Administration
10903 New Hampshire Ave
Silver Spring, MD 20993




Update


I (Stuart) for one, have nothing present to gain from Lemtrada being approved. 
Not financially and not by use of the medication.


I just believe in Choice and options for those affected by MS. 

This is why I created my petition.

PLEASE click the above link to sign our petition

And

Please copy the letter shown above and send along with your message to:
janet.woodcock@fda.hhs.gov 


VOTE FOR CHOICE of Medications







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Genzyme's MS Drug Aubagio Recommended By National Institute For Health And Care Excellence (NICE)

January 24, 2014

A Petition is found below this article posting - Please read the petition sign and send your letter to the address shown -- thank you
==========================================================
Genzyme’s new multiple sclerosis drug Aubagio (teriflunomide) has received final guidance recommendation from the National Institute for Health and Care Excellence (NICE).
Aubagio (teriflunomide) is used to treat adult patients with active relapsing, remitting multiple sclerosis (RRMS). Teriflunomide is administered as a first oral, once-daily, and first line therapy for reduction of annualized relapse rates. It is also used to reduce disability risk accumulation compared to placebo during the Phase III controlled trials. The drug is developed as a selective immunomodulatory disease-modifying treatment for MS and has compounded anti-inflammatory properties.
Aubagio provides a viable alternative to injectable first-line RRMS treatment options. Carole Longson, NICE Health Technology Evaluation Center Director, said, “As an oral treatment with a different side-effect profile, teriflunomide offers a new option for treating relapsing-remitting multiple sclerosis, which could have a substantial impact on quality of life for people with relapsing-remitting multiple sclerosis.” Director Longson added that all current treatments for MS are injectables and can be associated with disagreeable side effects.
The EU granted marketing authorization for teriflunomide based on the TEMSO (Teriflunomide Multiple Sclerosis Oral) and TOWER (Teriflunomide Oral in people With relapsing remitting multiplE scleRosis) clinical trials. During the two-year, double-blind Phase III trial, teriflunomide 14 mg decreased the annualized relapse rate in patients with RRMS by 32% (TEMSO) and 36% (TOWER) compared to placebo. The drug also reduced sustained disability accumulation risks by 30% (TEMSO) and 32% (TOWER).
Benjamin Turner, Barts Health NHS Trust consultant neurologist, said, “Teriflunomide is a simple, effective, once-daily oral medication that will be invaluable for people with MS… This approval is great news for UK patients and especially those who cannot tolerate injections, as until now there have been limited treatment options open to them.”
With NICE’s final guidance recommendation, the National Health Service (NHS) is induced to a legal obligation to begin funding treatment for eligible patients within the next three months.
==============================================
==============================================
Thousands of Multiple Sclerosis patients are getting worse each day, when currently used medications are not working for them or their body refuses to accept the medication.

Another Option is needed and this Option Should be Lemtrada

The FDA on December 30, 2013 Denies the use of Lemtrada for MS Patients. THIS was A sad day for people with more active Multiple Sclerosis.

Lemtrada has been approved worldwide, but not good enough for us it seems, in the USA.

We are more than 400,000 strong (living with MS) in the USA
WE NEED YOUR VOTE to give another OPTION to those that Can benefit from this medication; hoping to keep them from severe disability.

NEW CONTACT INFORMATION --  (SEE BELOW)

YES, WE NEED YOUR VOTE.
Also we need you to write directly. WE NEED YOU TO send emails. –
We need this request to go Viral --

• Let us FLOOD the OFFICE of this FDA committee with emails, WITH the information shown above.
• Please copy and paste what is typed and attach your name to that email and then send to: 

submit all Petitions to the new contact information showing below:


Janet Woodcock, MD
Director, Center for Drug Evaluation and Research
Food and Drug Administration
10903 New Hampshire Ave
Silver Spring, MD 20993




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Thank you    
…………………….
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Research and Markets: Generic Drug Opportunity Assessment - Fingolimod (Gilenya)

June 23, 2014


Gilenya (fingolimod) is the first in a new class of multiple sclerosis (MS) therapies called sphingosine 1-phosphate receptor modulators and the first oral therapy approved to treat relapsing-remitting MS (RRMS). In the US, Gilenya is indicated for relapsing forms of MS. In the EU, Gilenya is indicated for adult patients with highly active RRMS defined as either high disease activity despite treatment with beta interferon, or rapidly evolving severe RRMS. A Phase II/III study of Gilenya in patients with chronic inflammatory demyelinating polyradiculoneuropathy was initiated in 2012. In 2012 Gilenya continued to show rapid growth as the first once-daily oral therapy approved for relapsing remitting and/or relapsing forms of multiple sclerosis (MS and RRMS) in adult patients, and achieved $1.2 billion in annual sales.
The Market
The Multiple Sclerosis market has been dominated by injectables - interferons and more recently Teva's Copaxone. It is believed that interferon medications such as Rebif, Betaferon, and Avonex are effective against MS because they help regulate the immune system to decrease attacks on myelin. Rebif has been shown to be effective in treating patients with relapsing-remitting MS. The interferons have been shown to reduce relapses in relapsing-remitting MS, though not for primary progressive multiple sclerosis, for which there are currently no disease-modifying treatments proven to be effective.
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Stem Cell Update by Richard Cohen

Stem Cell Update


Serious science playing out in medical laboratories is strange and mysterious.  Individuals in white coats , some gowned and working in clean rooms, perform specialized tasks amid the strange sounds of whirring machines unknown to most.  We spent part of the afternoon yesterday in such a place, the labs of the Tisch MS Research Center.   Though I thought these creatures looked like CIA types, they were busy extracting stem cells from bone marrow.  They showed me my cells.  There is a lot to understand.  Those cells will be infused back into my body in about one month.   We will share our video soon.  See if you can make sense of it.  I am shocked that I think I get it.
Stay tuned.
Post source: http://richardmcohen.com/stem-cell-update/


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Wednesday, January 22, 2014

Recorded Calls on our Health and Nutrition Products

Provided by Sherri K -

These calls are very informative. You can listen to them anywhere by
just dialing the number and then putting in the access number for each call.
Please be sure to press the # key when they ask for the reference number.


Recorded Phone Calls


Calls can be accessed by calling (712) 432-1202 and then entering the
Access codes shown below.

These call are listed under www.unlimitedlifestyles.com under the recorded call Section also IMPORTANT!

- YOU MUST PRESS THE # KEY AGAIN AFTER THE CALL REQUESTS THE REFERENCE
NUMBER OR THE CALL WILL NOT PLAY.

1- .NM Program from a Healthcare Professional's Point of View (Download MP3)
Access Code: 939478# (20 Mins) - Dr. Stan Pierce


.2- Wellness & Daily Essential Kits (Download MP3) Call is attached to
this email
Access Code: 609222# (13 Mins) - Dr. Sheryl Duchess


.3- Detox & Digestive Kits (Download MP3)
Access Code: 820894# (30 Mins) - April Ritchotte


.4- Anti-Stress Kit (Download MP3)
Access Code: 394046# (15 Mins) - April Ritchotte

.

.5 TLS Accelerators (Download MP3)
Access Code: 613573# (15 Mins) - April Ritchotte


.6- Spectrum Line of Supplements (Download MP3)
Access Code: 477982# (25 Mins) - Jacque Birchman



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A Patient's Story on her Experience with Lemtrada


Written 01.22.14 -

I am Lisa Dasis, a 52 year old mother of two grown children and grandmother of four wonderful grandchildren. My husband and family are so supportive of me especially since being diagnosed with Multiple Sclerosis back in 2004.
Receiving my diagnosis was not an easy process as it took many years and several incorrect diagnosis to get to that point. You would think being a Registered Nurse would have helped me with ascertaining it, but as many of you know many symptoms would come and go with different durations. Often when I would finally get into a physician’s office, there was not a symptom present for them to observe. There is a family history of Lupus so when receiving this diagnosis, there wasn’t much of a surprise. Many symptoms of Lupus mimic MS, but as time marched on and everything started to not only increase in duration but a lot of new problems started to appear, I started questioning if something else could really be going on. 

My career at that time was an orthopedic surgical nurse which required me to hold extremities and pass instruments to the surgeon. This job required a great deal of physical strength both in holding extremities and standing for long length of times. It became impossible for me to manage this as my condition deteriorated, so I found myself moving into positions that took less physical strength but more mental stamina. This too became an obstacle for me when the cognitive disorders appeared. Nursing is one area where mistakes cannot happen, so as it became a major problem I pushed hard for a referral outside my small community for a second opinion. In the back of my head I started to suspect Multiple Sclerosis and had mentioned it to my doctor. He felt that there was a small chance of this being possible but fortunately, he referred me to a MS Specialist/Researcher in Nashville, TN.

Within 15 minutes of my exam with this physician, he said, “I believe you have MS and feel it is located primarily in your neck.”  A MRI of my head and neck, spinal tap, and an Evoke Potential test were all ordered and results given to me within two weeks of my initial visit. The primary diagnosis was RRMS and was immediately put on Betaseron. Within two years I was told that I had Progressive MS and that the medication I was on wasn’t working. My EDSS score had gone from a 5 up to a 9.7, was in a wheelchair full time, loss of control of bladder and bowels, overwhelming fatigue, weakness, and experiencing major slurred speech and cognitive disorders. My physician called my husband and me in and said that there was a small window of opportunity to turn things around. He had found a medication that had worked very well over in the UK for several years and wanted to try this on me. This medication was called Campath, or also known Alemtuzumab, now labeled Lemtrada. 

My first dose started in January of 2006 which I received in his office by I.V., with each dose lasting about 5 hours for 3 days. The first year after taking it, my blood work indicated it was working but I really didn’t see an improvement with my condition. The second dose was given a year later following the same protocol as before. Once again my blood work showed it was working but this time there was enough improvement that I was able to get out of the wheel chair, and had control of both bladder and bowel functions. By the end of the second year I only need a cane to assist me with ambulation. We repeated the 3rd dose in January of 2008; both my husband and I where totally blown away with how my body responded to this dose. By the summer of that year I was walking without any assisted devices, there were no exacerbations experienced, and it was the closest to feeling like the person I had once remembered. Taking advantage of this, I began walking daily and started an exercise regime.

The following 4 years I went without taking another dose of Lemtrada. I felt amazing and was walking up to 4 miles a day.  Two of the three years there wasn’t a flare-up that required a intervention. My MRI’s had improved a great deal and it had been so long since I remembered feeling that good that I started thinking about possibly returning to work. By the end of the 3rd year though, a treatment for an exacerbation was needed. Year 4 was very difficult for as my condition started back sliding. There were more “bad” than “good” days which required Solumderol as treatment. My doctor and I discussed my next dose of Lemtrada but it wasn’t available for purchase or through a study. It had been taken off the market, which really surprised me because I had heard over the past couple of years that it was close to being FDA approved. 

March 2013, I received my 4th dose through a study by my physician. This dose didn’t work this time by evidence of additional lesions on my MRI compared to the one performed before the dose was given. I have also been experiencing a great deal of weakness, fatigue, falling episodes, cognitive problems, and several other symptoms that have not responded even to Solumderol. It has been a difficult year both with living with the active MS and being disappointed with the outcome of my last treatment. My doctor and I feel that length of time that we had to wait for Lemtrada to be available again, as a “study” drug that it could take additional doses for my body to respond as it did before. My next dose is scheduled this February and must say that I am excited and hopeful for a positive outcome. My faith in this medication is extreme and can’t help but be excited on how much it will help others.

I write a blog about MS call MSlisaSAYS.com and have spoken to several individuals who have taken Lemtrada and are who are just now taking it for the first time. The responses from those who have taken it before are all positive and for those who are taking it now for the first time or who are hoping to be treated with it in the future, I want you to know how much it has been my miracle drug and hope your outcome is as great as mine.

=======================


In response to the many who need an option for another MS medication, I posted a petition online several days ago, that asks the FDA to reconsider their decision to deny this medication in the USA. Can you all imagine this?
  Being denied in the USA - YET APPROVED everywhere else in the world.
        Why is this?
                   
Please help LISA and Hundreds if not thousands of others, to have another medication Option in their tool-chest.

I for one, have nothing to gain from Lemtrada being approved. Not financially and not by use of the medication.

I just believe in Choice and Options for those affected by MS. 

This is why I created my petition.  
Please click the link - read and if you can, please sign the petition as it reads...

   - thank you -- Regards, Stuart






Disclaimer: The information shown above is the biography of one patient and the opinion of another. 
   If you ave any question about Lemtrada - please contact your healthcare provider

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Modest familial risks for multiple sclerosis

January 22, 2014
Contact: Press Office
pressinfo@ki.se
46-852-486-077
Karolinska Institutet 

Modest familial risks for multiple sclerosis

Even though multiple sclerosis is largely caused by genetic factors, the risk of patients' relatives developing the disease is lower than previously assumed. This is the conclusion of a new population registry-based study, published in the scientific journal Brain.
In the present study from Karolinska Institutet, researchers have assessed the familial risks for multiple sclerosis (MS) by using population registers and health care registries. This way, the researchers were able to include in their study almost everyone diagnosed with the disease in Sweden. Slightly over 28,000 individuals diagnosed with MS from 1968 onwards were identified. By using the Swedish Multi-generation registry, both biological and adopted relatives were identified and the researchers could assess the risks for the different groups.
This is the first study for MS in which the familial risks have been analysed using matched controls. By including randomly selected controls and their relatives, the researchers could also assess the risk for relatives of MS patients developing the disease compared to the risk for the population in general.

The estimated risks in this study turned out lower than the previously reported high risks. The risk for a sibling to a person with multiple sclerosis for developing disease was seven times higher compared to the general population, while the risk for a child of an MS patient was five times higher. The study found no increase in risk for grandchildren and nieces/nephews.

"The population registers in Sweden are reliable tools for finding relatives to MS patients and their possible MS diagnosis, instead of relying on the patients' memories. Our study is a good example of how one can quickly achieve more reliable results than the previous studies that were based on patient groups collected in hospitals throughout decades," says Helga Westerlind, PhD student at the Department of Clinical Neuroscience and first author of the article.

The researchers have also used the Swedish twin register to identify twins with multiple sclerosis and investigate how genes, shared environment and individual risk factors contribute to the disease. The analysis confirmed previous results: MS seems to be primarily caused by genetic factors, and secondarily by individual risk factors. A shared environment does not appear to be of any significance.

###

The study was funded by the Swedish Research Council, Karolinska Institutet, Stockholm County Council, the Bibbi and Nils Jensen Foundation and the Swedish Research Council for Health, Working Life and Welfare.

Publication: "Modest familial risks for multiple sclerosis - a registry based study of the population of Sweden", Helga Westerlind, Ryan Ramanujam, Daniel Uvehag, Ralf Kuja-Halkola, Marcus Boman, Matteo Bottai, Paul Lichtenstein, Jan Hillert, Brain, online 17 January 2014.


Contact the Press Office and download images: ki.se/pressroom.
Karolinska Institutet - a medical university: ki.se/english.

SOURCE

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Sanofi’s Aubagio Wins Final Approval From U.K. Cost Agency NICE

  Jan 21, 2014
Sanofi’s multiple sclerosis drug Aubagio won final approval from the U.K.’s health-cost agency, allowing access to a market in which it will compete with Novartis AG’s Gilenya.
The National Institute for Health and Care Excellence, or NICE, recommended Aubagio, also known as teriflunomide, as a treatment option for adults with relapsing-remitting multiple sclerosis, the most common form of the disease, it said in a statement today. The decision confirms a preliminary ruling made last month in which NICE recommended the drug after Paris-based Sanofi agreed to a price cut.
The drug is the second oral MS treatment to win NICE’s backing in the U.K., after Basel, Switzerland-based Novartis’s Gilenya was approved in April 2012. Aubagio is the only oral MS drug to demonstrate an ability to slow the progression of disability in two trials, William Sibold, the head of MS at Sanofi’s (SAN) Genzyme unit, said in a telephone interview.
“That consistent efficacy is something that resonates very well with the community,” Sibold said.
Continue Reading
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Medication Compliance

I just read one of the better written articles on patient compliance with medication and treatment protocols that I have seen in my 40 years as an RN.  It is long (9 pages) but written in an easily readable and understandable style and gives clearer insight into why we do not always take our medications as directed.  It certainly provides food for thought on the occasional difference in patient goals and those of their health care provider.  Here is a link to the Article:


Cherie C. Binns RN BS MSCN

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Florida’s surprising progress toward a more sensible marijuana policy -

by Andrew Marra
Allowing medical marijuana could foster more sensible attitudes about decriminalization


It’s remarkable how quickly the landscape is shifting on the divisive issue of marijuana legalization. Not just in headline-grabbing states like California, Colorado and Washington, but here in Florida, too.

This month, Republican lawmakers in the Florida House allowed a hearing on medical marijuana legalization, focusing on a certain marijuana strain that may help treat seizures in children. After hearing testimony from parents with children who suffer from seizures, a top Republican lawmaker vowed to put together a bill that would permit those treatments using a marijuana strain called “Charlotte’s Web.” One Republican lawmaker, a Baptist minister, called it “using the substance wisely as God intended.”

That sort of comment from a conservative member of the Legislature’s Republican caucus would have been almost unimaginable even a few years ago. But things are happening so quickly in the state and around the country that even this development could be overtaken by other events. A push is on to legalize medical marijuana in Florida through a constitutional amendment, and the backers of the proposed amendment say they have more than enough signatures to get the measure on the ballot.

Those signatures still have to be verified, and the state Supreme Court has to approve the ballot language. But if those two hurdles are cleared, voters could vote on whether to legalize marijuana for medical use this November.

All of this is happening little more than a year after Colorado and Washington legalized marijuana use for any purpose, and at the same time that President Obama is making headlines for commenting that he believes marijuana is no more dangerous than alcohol, and that the experiments with legalization in Colorado and Washington are important because of the way marijuana arrests disproportionately target African-Americans.

As the Legislature’s hearing on medical marijuana show, the politics of drug legalization are changing fast. Whether voters get a chance to speak on the issue this November, a reckoning inevitably will come. And it will be sorely needed.

Allowing medical marijuana in Florida is a common-sense choice to alleviate pain for thousands of sick people. Perhaps just as importantly, legalizing marijuana for medical purposes would create a political environment more suitable to exploring ways to decriminalize marijuana possession and regulate its recreational use at the state level.

- See more 

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