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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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Friday, September 3, 2010

Most Neurologists Yet to Be Cautious, Plan To Prescribe Oral Multiple Sclerosis Drugs

Article Date: 03 Sep 2010


In a study published this week by Majestic Research, almost 60% of neurologists expressed unaided concern about the side effects/safety of oral MS therapies in development, including NVS's Gilenia and MRK/EMD Serono's oral cladribine. Despite their concerns, the vast majority of neurologists expect to prescribe these drugs if they are approved, as the new oral MS therapies are expected to be highly efficacious and more convenient for patients than available injectable therapies. Data from the study suggests that new orals will steal share primarily frommultiple sclerosis market leaders, including BIIB's Avonex and TEVA'sCopaxone. 

The study titled Event Pulse Preview: Multiple Sclerosis shows that 84% of neurologists expect to prescribe Gilenia for some MS patients if approved, but prescribing will likely be limited to second- or third-line therapy until concerns about safety and monitoring requirements are resolved. Jemma Lampkin, Director of Market Research, said, "Neurologists are clearly worried about the side effects that have come up in the clinical trials for these drugs in development, and the negative press regarding Tysabri's PML cases over the past few years also seems to be a factor. Still, almost all of the neurologists in this study expect to prescribe Gilenia, so there is optimism regarding its potential." The study suggests that Gilenia, which is expected to be approved in September 2010, could have a more significant impact than some have predicted. 




Continue reading


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Disclaimer:  'MS Views and News' (MSVN), 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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CCSVI News: Opposition calls decision to withhold funding for MS clinical trials 'devastating'

BY MARK IYPE, POSTMEDIA NEWS



Opposition critics say the decision by the federal government not to fund Canada-wide clinical trials of a controversial multiple sclerosis treatment is a huge setback for the thousands of patients suffering from the debilitating neurological disorder.

"I think it's devastating for MS patients," said Liberal public health critic Kirsty Duncan. "This is a body-blow to a lot of people that think this treatment really works."

Duncan said the hundreds of Canadians already travelling to get the surgical treatment in Bulgaria, Poland and India should be tracked to determine if the Italian-developed procedure works.

"If Canada wants to know if this works, why are we not tracking the patients that go overseas?" she said. "We have to have evidence-based medicine and we're not collecting the evidence."

On Wednesday, Federal Health Minister Leona Aglukkaq announced the federal government has decided to accept the recommendations of its premier health research organization that there be no pan-Canadian clinical trials of the controversial new therapy because of the overwhelming lack of scientific evidence on the procedure's safety.

"I feel the most prudent course of action at this time is to accept the recommendation of the country's leading researchers," Aglukkaq told a news conference in Ottawa.

Backed by experts from the Canadian Institutes of Health Research and the MS Society of Canada, she said the government would wait for the results of seven Canadian research projects looking into the efficacy of the so-called liberation treatment before clinical trials proceed.


CONTINUE READING

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Disclaimer:  'MS Views and News' (MSVN), 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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Wednesday, September 1, 2010

Too Much with Too Little

Source : Myelin Repair Foundation
Posted: 31 Aug 2010 04:51 PM PDT

When scientists talk about their research on diseases like Parkinsons,
Alzeheimers or multiple sclerosis, it seems that the only thing that people want to know is when there going to be a cure. Scientists, in return, answer with matter of fact figures like 15, 20 or even 50 years. But in the grand scheme of scientific research and medical discovery, how many cures have actually been found by their predicted deadline? Not many, according to Emily Yoffe, from Slate Magazine.

In her most recent article titled The Medical Revolution, Yoffe discusses the types of promises that have been made due to technologies like stem cells and genomics. But instead of focusing on how these new medical practices may be the answer to our medical problems, she writes about how they might be the cause.

A decade ago the human genome was finally unraveled. It was at that time that we were supposed to understand how and why we are affected by such devastating diseases like those mentioned above that rid of us of our memories, our motility and most importantly the ability to lead a completely normal life free of complication. But that did not happen. Instead, Yoffe explains, scientists found that the human genome is much more complicated than they anticipated. Still, however, researchers use the fact that they have mapped the human genome to over promise cures to wishful patients. They do this not only because to discover anything in biology one has to be continually optimistic, but also to receive funding for their research. This money goes into the discovery portion of the drug development process but it does almost nothing to cover the cost of bringing the new drug to clinical trial – the critical step to making a drug target become a treatment.

Another broken portion of the drug discovery process is that the researchers are so focused on discovering a cure for a certain disease, and promising their patients that cure, that they forget to mention the target validation process which is required to catch the wandering eye of pharmaceutical companies. Most discovery biology gets trapped in the moat that surrounds the target validation process because of the money it takes to push a target through. This moat is called the valley of death in the medical field. That is because small molecules that show promise to become a treatment, by ridding animal models of disease completely, go there to die when they are not picked up by big pharmaceutical companies or they lose funded research.

Some may argue that the problem with the medical system is that there are not enough cures or treatments coming out of all of the funded research. But take a step back. Maybe scientists are just promising too much when they understand too little. That is one of the reasons that the MRF is traveling down the road less traveled of drug target validation. By having an Accelerated Collaborative Research model, our drug targets will be able to bridge the valley of death and successfully land on the side of clinical trials.

If you would like to read more about The Medical Revolution, go to the article written in Slate by Emily Yoffe here


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Disclaimer:  'MS Views and News' (MSVN), 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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MS Lifelines just reached a major milestone



MS Lifelines just reached a major milestone of servicing one million calls.  That’s important because MS Lifelines, an educational and support service for the MS community, helps people living with MS, their families and care partners with their unique needs.  We wanted to make sure that you and your readers were up to date on everything that MS Lifelines has to offer the MS community.

More about MS LifeLines:

        The call center includes patient enrollment specialists, patient support specialists, nurse support specialists and reimbursement specialists that are available 24/7.

·        MS LifeLines is sponsored by EMD Serono, Inc. an affiliate of Merck KGaA, Darmstadt, Germany, and Pfizer Inc.


     Learn more of MS Lifelines by visiting their website: www.mslifeslines.com







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Disclaimer:  'MS Views and News' (MSVN), 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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Physically Integrated Dance Comes of Age for persons with a Disability

September 2010


Physically integrated dance is performed by people with and without disabilities.


Read more, from the New Mobility website by clicking here



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Disclaimer:  'MS Views and News' (MSVN), 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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SPONSORSHIP Dollars are needed to educate

MS Views and News seeks private and corporate sponsors.


Corporate sponsorships are limited to those in any healthcare community
Private Sponsors / private donors can help us to provide the information we are providing to the MS community. Your family name can be listed on a wall of donors that we will soon create.


For Our Sponsorship Opportunities, please click here to see what we need and for what, we need the funding.


To make a donation, please use this link
In case you want to donate but you can not make one payment and would rather be able to make smaller monthly donations, then please click here to do this in a manner in which you are comfortable.  Then enter the amount you are able to donate each month as a recurring payment.



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Disclaimer:  'MS Views and News' (MSVN), 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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The Titanium Wheelchair Revolution


September 2010

Aluminum, once the industry standard, got a big challenge when titanium wheelchairs entered the market in the mid '90s — and justifiably so. Titanium chairs soon became synonymous with "ultralight" and pushed the envelope of what is possible. But chairs made out of the aerospace metal also came with higher price tags. In time titanium chairs pushed manufacturers and engineers to advance aluminum chairs to the point where their weight is now on par with titanium. With weight no longer an issue, what are the advantages of titanium, and do they justify a higher price tag?
"I'm brutal on chairs," says Brad Morgan, who used a titanium Quickie for 16 years.
"I'm brutal on chairs," says Brad Morgan, who used a titanium Quickie for 16 years.
To answer the question, let's first revisit the basics. Pure titanium is brittle; its superior qualities are achieved when combined with other metals to form titanium alloys. Grade 9 seamless aircraft-grade titanium has proven to be the best for wheelchair applications. Titanium is heavier than aluminum, but twice as strong. Because of titanium's high strength, you can make a chair with thinner-walled tubing, using less material. Thus, lightness and strength are combined.

Alan Ludovici, vice president of engineering for TiLite, the pioneering titanium wheelchair manufacturer, explains that working with titanium requires precision and unique design and manufacturing skills. He says titanium has very good "memory" and is difficult to bend, so the bends have to be exact. Once titanium is bent into a shape for a chair, the memory keeps it in that shape. The fit of titanium parts needs to be precise in order to achieve a good weld. "At TiLite we have a process called 'zero gap tolerance,'" he says, "meaning that all the parts of a frame have to fit together so perfectly that they are water tight — before they are sent to our welders." 


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Disclaimer:  'MS Views and News' (MSVN), 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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Can Do MS - Offers a Quilting fundraiser

For the CAN DO MS organization
Donate a Quilt Square today. Click here to learn more


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Disclaimer:  'MS Views and News' (MSVN), 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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The Positives and Negatives, pros and cons of CCSVI and needed research

What is written here is My opinion and nothing more.
I am not a medical expert, have no degrees in medicine.
The only initials behind my name are RRMS, and for many, you too have those same initials.

Yes, I have heard from many who have felt so much better since having been ballooned for CCSVI. I have heard from people who are walking again after not being able to walk for years. I have heard from those that are able again to ride a bicycle, able to jog or just able to feel better.

But then too, I have heard from countless persons, who had the procedure and while at first thought they made a recovery, then learned within days that they had not, and instead wonder, why not?

Again - like I have said and will continue to always say, there are positives and negatives to everything.
Whether this be of articles I blog or what makes the world go round and round...

CCSVI might be useful for some (the answer they have been waiting for) and not for others.

Tysabri®, Copaxone®, Rebif®, Avonex® and Betaseron® are good for some and do nothing for others.
Tylenol® works for me but not for my daughter. Motrin® works for her but does negative things to me.
Warm baths help some, cool baths help others..

Getting my point yet?

The concept for CCSVI and how it might help "some" in the MS community is still in infancy stages. Yes, I feel it needs research and research studies to learn most specifically how it helps some and why it does nothing for others. And why also are some with MS candidates (having clogged jugular veins) and why others are not...

In my opinion, research is needed to learn if the stenosis of these veins might just be another form (or another symptom) of Multiple Sclerosis and like most MS symptoms, not everybody has each symptom.

So again, I will say that I am neutral on the subject of CCSVI.  I only hope that in time, we will know more of the effect CCSVI has on some and not on others and why Fatigue or Pain or Cognitive Dysfunction affect some more than others as a primary symptom.

Keep an Open Mind and Have a great day...


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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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Quality Care from a Certified Nurse Practitioner and board certified multiple sclerosis nurse

In many communities around the world, there may not be a MS Neurologist or even a neurologist, but might be a Nurse Practitioner who is a board certified MS Nurse and quite capable in treating you.

Please read of one, who I am fortunate to know, and how she has added a benefit to the MS medical arena in South Florida.

Click the links found below to be empowered with great information.



Jennifer Smrtka, MSN, ANP-C, MSCN

Certified Adult Nurse Practitioner
Multiple Sclerosis Specialist
Neurologic Associates Research
Fort Lauderdale MS Center
Pompano Beach, FL


Jennifer M. Smrtka, MSN, ANP-C, MSCN, is a board certified adult nurse practitioner and board certified multiple sclerosis nurse. She earned her BSN from Michigan State University in East Lansing, MI, and her MSN from the University of Michigan in Ann Arbor, MI. She has held faculty teaching and clinical positions at the University of North Carolina at Chapel Hill Medical School and Columbia University School of Nursing in NYC.  At both academic posts, she was faculty nurse practitioner for the UNC MS Center and the Columbia University Multiple Sclerosis Clinical Care Center.  She has exclusively worked in MS since 2003 as a clinician, clinical instructor, consultant, and a clinical research investigator.  She is a board member of the International Organization of Multiple Sclerosis Nurses.  She currently collaborates with Dr. Brian Steingo of the Ft. Lauderdale MS Center in Ft. Lauderdale, Florida. She has published multiple journal articles and lectured extensively on the topics of the clinical aspects, treatments, and the pathophysiology of MS.

Program Affiliation History



Source for the above information can be found here: PrimeInc.org

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Disclaimer:  'MS Views and News' (MSVN), 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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