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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, March 5, 2010

AN MS Patient's Story on His LIBERATION TREATMENT

Written by Mark Kalina


It is now 3 days after "Liberation Day". Sunday afternoon 12:30 pm. February 28th, 2010.

Three days ago, Dr. Mohsin Saeed at Scripps Clinic opened my left jugular vein with angioplasty and my right jugular vein with angioplasty followed by a stent. The procedure is called by its inventor, Dr. Paolo Zamboni, The Liberation Procedure. It is a revolutionary treatment for an old, disabling disease -- Multiple Sclerosis. Until about 3 months ago, the only theory I knew about MS was that it was an autoimmune disease which attacked and destroyed myelin, the external coating around nerves. For unknown reasons, nerve conduction was slowed while plaques formed in the brain. It was always unclear why or when attacks would happen but they did and were difficult to control. Modern medicine responded with anti-inflammatory drugs and immune suppressants following the line of reasoning that if the disease was caused by an immune response, then stopping the immune response would stop the disease.

I was always leery of this approach because as a doc, I felt I needed my immune system to stay well in the face of my patients who carried diseases. In fact, I was quite proud of my ability to stay well in the face of wintertime time viruses, etc. So even though my life and body had deteriorated significantly over my ten or so years with MS, I kept my head buried in the sand in terms of using the pharmaceutical technologies available to me and my peers with this affliction.

» Read More

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Researchers Find Further Evidence Linking Epstein-Barr Virus And Risk Of Multiple Sclerosis

March 5, 2010

Researchers from the Harvard School of Public Health, Walter Reed Army Institute of Research, and a team of collaborators have observed for the first time that the risk ofmultiple sclerosis (MS) increases by many folds following infection with the Epstein-Barr virus (EBV). This finding implicates EBV as a contributory cause to multiple sclerosis. The study appears in an advance online edition of the journalAnnals of Neurology and will appear in a later print edition.

Hundred of thousands of individuals not infected with EBV were followed up for several years through repeated blood samples collections. Researchers were then able to determine the time when individuals developed an EBV infection and its relation to MS onset. "The recruitment of individuals before they were infected with EBV and following up with them for several years is the critical methodological aspect that makes this study qualitatively different from all previous work," said Alberto Ascherio, senior author of the study and professor of epidemiology and
nutrition at Harvard School of Public Health and professor of medicine at Harvard Medical School.

continue reading from the 3rd paragraph at Medical News Today

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An e-list members' show of Gratitude -


From: deb etheriedge [mailto:m]
Sent: Friday, March 05, 2010 12:24 PM
To: Stuart
Subject: Re: Thank you and Welcome to "Stu's Views and MS Related News"/ "MS Views and News"...

Wanted you to know that this e-newsletter introduction is the best in regard to any topic I have ever received! It is so informative and well organized. Stuart, you are a gifted writer and editor. I am thankful you have chosen to fill this needed position of gathering and then relaying to us information we desparately seek.
Sincerely,
Debby Etheriedge

Want to see the letter Debby is writing about? Just take 30 seconds to register by clicking here: http://goo.gl/6yI8
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Multiple Sclerosis Research attn Gulf War Veterans with MS and other autoimmune m-s symptoms

March 5, 2010 by Denise Nichols - Veterans Today

Italian Researchers Discover A Possible Onset Mechanism For Multiple Sclerosis


A non-pathogenic bacterium is capable of triggering an autoimmune disease similar to multiple sclerosis in the mouse, the model animal which helps to explain how human diseases work. This is what a group of researchers from the Catholic University of Rome, led by Francesco Ria (Institute of General Pathology) and Giovanni Delogu (Institute of Microbiology), have explained for the first time in a recently published article on the Journal of Immunology.

Multiple sclerosis is caused by an inflammatory reaction provoked by the immune system, leading to disruption of the coating of the nerve fibres in the Central Nervous System.

“We do not know what causes multiple sclerosis”, explains Francesco Ria, immunologist of the Catholic University. “We know that there exists a genetic factor and an environmental factor, but we do not yet possess a satisfactory theory which can explain how exactly this environmental factor works”.

Currently, there are two competing theories in the field: according to a first hypothesis, a virus hides within the brain and what causes the disease is the immunologic antiviral reaction. On the other hand, the second hypothesis states that a viral or bacterial pathogen similar to specific molecules of the Central Nervous System causes an inflammation which provokes a reaction of the immune system. This reaction ends up destroying the brain cells. The latter is called the autoimmune hypothesis.

» Read More


Thursday, March 4, 2010

An often forgotten medication for Multiple Sclerosis



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Message of Gratitude from an MS Patient

I am so happy to have received the email shown below (letting me know how much my work is appreciated) that I asked the sender of this, for her permission for me to post it...

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From: Judy Z [mailto:]
Sent: Thursday, March 04, 2010 12:28 PM
To: Stuart@msviewsandnews.org
Subject: Re: MS in the News - includes info: AMPYRA, CCSVI, COPAXONE News, patient stories, and...

Hi Stu,
Don't know if I am doing this right, but I can't tell you enough how much your blog has helped me cope with this most nasty, debilitating disease.
I have been diagnosed for 8 years but knew I had it much longer. My Neuro is a total ass and doesn't care what drug I choose since his drug of choice was Avonex (he was part of the clinical trials) and at the time I opted for Copaxone. He is now being "paid" by Clabradine so is pushing that for then near future. I see him once a year and all he wants to do is give my Rx for Copaxone and Xanax and I have actually stopped asking him questions as he fails to do a full neuro work up each time I come and when I do ask a question he tells me it is not related to MS! He heads up this practice and when I mentioned I would like to switch to another doc in the group (my friend sees him) he maligned him and went on to write the scripts and leave the room. So most of my info is gleened through the web and YOU. I am so inspired by your Tysabri experience as I have felt that I am declining, ever so slowly but a decline nonetheless. So I have decided that perhaps I would like to give this a try. I am most fortunate to have attained an appt at Georgetown with an MS specialist there and will ask his advice and try to run my laundry list of 8+ years of questions by him but in the meantime I continue to read your blog regularly and have learned SO much. Finances being what they are with me not working and a son in college I hope to be able to contribute to your endeavor in the near future, but in the meantime, thanks again and keep up the good work. Don't overdo with Tysabri but do enjoy life as I have always been about quality as opposed to quantity!
Judy Z in Richmond VA


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TM Designs can put Your MS Art onto Shirts


The MS Views and News T-Shirt was produced by TM Designs - Art to Shirt
For lack of having a model to pose with this shirt, it was tacked for viewing


If you contact TM designs, please let them know
you learned of them from Stuart
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intermittent self-catheters - Study

Information provide by The Patients Voice in the UK

Hi Everyone

A research team at Brunel University in the UK is trying to find people who use intermittent self-catheters as a result of neurological damage to the spinal cord who would be willing to complete a questionnaire.

http://www.thepatientsvoice.org/The_SMILE_study.asp

Best wishes

The Patients Voice




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Wednesday, March 3, 2010

Fatigue, mood and quality of life improve in MS patients after progressive resistance training

Information provided by Karen D. in Tamarac, FL.

Department of Sport Science/Neurology University of Aarhus, Dalgas Avenue, Denmark/Dept. of Neurology, Soenderborg Hospital, Denmark.

Fatigue occurs in the majority of multiple sclerosis patients and therapeutic possibilities are few.


Fatigue, mood and quality of life were studied in patients with multiple sclerosis following progressive resistance training leading to improvement of muscular strength and functional capacity.


Fatigue (Fatigue Severity Scale, FSS), mood (Major Depression Inventory, MDI) and quality of life (physical and mental component scores, PCS and MCS, of SF36) were scored at start, end and follow-up of a randomized controlled clinical trial of 12 weeks of progressive resistance training in moderately disabled (Expanded Disability Status Scale, EDSS: 3-5.5) multiple sclerosis patients including a Control group (n = 15) and an Exercise group (n = 16). Fatigue (FSS > 4) was present in all patients. Scores of FSS, MDI, PCS-SF36 and MCS-SF36 were comparable at start of study in the two groups. Fatigue improved during exercise by -0.6 (95% confidence interval (CI) -1.4 to 0.4) a.u. vs. 0.1 (95% CI -0.4 to 0.6) a.u. in controls (p = 0.04), mood improved by -2.4 (95% CI -4.1 to 0.7) a.u. vs. 1.1 (-1.2 to 3.4) a.u. in controls (p = 0.01) and quality of life (PCS-SF36) improved by 3.5 (95% CI 1.4-5.7) a.u. vs. -1.0 (95% CI -3.4-1.4) a.u. in controls (p = 0.01).


The beneficial effect of progressive resistance training on all scores was maintained at follow-up after further 12 weeks. Fatigue, mood and quality of life all improved following progressive resistance training, the beneficial effect being maintained for at least 12 weeks after end of intervention.

PMID: 20194584 [PubMed - as supplied by publisher]


source: PubMed

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Tuesday, March 2, 2010

Multiple Sclerosis related: Phase II Trial Results Published with regard to LDN (Low Dose Naltrexone)

Medical News Today - March 2, 2010

Results of a phase II clinical trial on the safety and effectiveness of low dose naltrexone (LDN) as a symptom-relief treatment for people with MS have been published in the journal Annals of Neurology.

The results of the study suggest that LDN is safe and may have positive effects on the mental quality of life in people with MS; but no effect on a patient's physical quality of life.

The work, led by Dr. Bruce Cree at the University of California in San Francisco, is the first placebo controlled clinical trial to look at the effects of LDN in people with MS.

Researchers found vivid dreaming was the only symptom reported as a result of taking LDN but due to a high drop out rate among trial participants, concluded that larger scale trials are needed to determine the effect of LDN on overall quality of life.

Dr Susan Kohlhaas, Research Communications Officer at the MS Society said, "We are really pleased to see results of this study published. The next step will be to complete larger, more detailed clinical trials to determine the potential of LDN as a symptom relief therapy for people with MS."

Source
Multiple Sclerosis Society

Article URL: http://www.medicalnewstoday.com/articles/180804.php

Main News Category: Multiple Sclerosis

Also Appears In: Neurology / Neuroscience, Clinical Trials / Drug Trials,

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NFL Player will not let MS slow him down


Like a lot of football players, Courtney Taylor is waiting for the phone to ring because, at the moment, he’s a man without a team.

Auburn’s all-time leading receiver was one of the last players cut by the Seattle Seahawks on the eve of the 2009 season, and he didn’t catch on with any other organization during the season.

He’s heard some good things lately. The Philadelphia Eagles might work him out, and the Cleveland Browns, too. Mike Holmgren, who picked him at Seattle in the sixth round of the 2007 NFL Draft, is now the Cleveland president.

Not that players like the 25-year-old Taylor can be choosers. The destination is less important than the opportunity.

"I gotta get back into it," he said. "I’m chomping at the bit right now."

Taylor’s still living in Seattle, working out to be ready when the call comes. Oh, and once a month, he does something that sets him apart from other former and future NFL players.

He travels to the University of Washington Medical Center for an intravenous infusion of a powerful medication called Tysabri. That’s how he fights his multiple sclerosis.

"The medication wore on my body at first, but once I got used to it, I felt like a brand-new man," he said. "The medication has it under control."

Continue Reading


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Tysabri Will Remain Decision Resources' Clinical Gold Standard Through 2018 for the Treatment of Secondary Progressive Multiple Sclerosis

Biogen Idec/Elan's Tysabri Will Remain Decision Resources' Clinical Gold Standard Through 2018 for the Treatment of Secondary Progressive Multiple Sclerosis

A Drug That Reduces Long-Term Disability Progression More Effectively Than Bayer HealthCare's Betaseron Would Earn Sizable Patient Share in the United States, According to a New Report from Decision Resources

WALTHAM, Mass., March 1 /PRNewswire/ -- Decision Resources, one of the world's leading research and advisory firms for pharmaceutical and healthcare issues, finds that, for the treatment of secondary progressive multiple sclerosis, Biogen Idec/Elan's Tysabri will remain Decision Resources' proprietary clinical gold standard through 2018. While some drugs in development for multiple sclerosis hold promise, most have less favorable efficacy and/or delivery features compared with Tysabri. Secondary progressive multiple sclerosis is a subpopulation of chronic progressive multiple sclerosis.


The new report entitled Multiple Sclerosis (Chronic Progressive): Amid Few Approved Therapies and Limited Drug Development, Significant Opportunity Awaits New Therapies for Patients with Progressive Forms of MS also finds that a drug approved for secondary progressive multiple sclerosis that reduces long-term disability progression more effectively than Bayer HealthCare's Betaseron would earn 25 - 38 percent patient share in the United States. These high patient shares reflect the unmet need for drugs that have the ability to delay disability progression in multiple sclerosis patients over the long term.


"Surveyed neurologists told us that a drug's effect on long-term disability progression is the attribute that most influences their prescribing decisions in chronic progressive multiple sclerosis," stated Decision Resources Director Bethany Kiernan, Ph.D. "Although Tysabri's robust therapeutic effects have been demonstrated only in relapsing-remitting multiple sclerosis patients, not chronic progressive multiple sclerosis patients, interviewed experts' positive perception of the drug's efficacy extends beyond the relapsing-remitting population. Taken together, these clinical data and the opinions of interviewed thought leaders indicate that Tysabri has advantages over the chronic progressive multiple sclerosis sales leader, Betaseron, on this attribute."


Continue reading from About the Report



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Monday, March 1, 2010

Acorda Therapeutics, Inc. today announced that AMPYRA(TM) (dalfampridine) Extended Release Tablets, 10 mg is now available by prescription

Acorda Therapeutics Announces Availability of AMPYRA(TM) (dalfampridine)

  • AMPYRA Now Available by Prescription in the United States and Puerto Rico
  • AMPYRA Patient Support Services Available to Assist Healthcare Professionals and People with MS

HAWTHORNE, N.Y., Mar 01, 2010 (BUSINESS WIRE) -- Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced that AMPYRA(TM) (dalfampridine) Extended Release Tablets, 10 mg is now available by prescription in the United States and Puerto Rico. AMPYRA was approved on January 22, 2010 by the U.S. Food and Drug Administration (FDA) as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. AMPYRA is indicated for use in all types of MS, and can be used either alone or with existing therapies, including disease-modifying agents.

"The majority of people with MS experience a decline in their walking as their disease progresses. The availability of AMPYRA therefore gives people with MS and their physicians an important new therapeutic option. AMPYRA is an oral therapy and the first and only treatment indicated to improve walking in people with MS," said Ron Cohen, M.D., President and CEO of Acorda Therapeutics. "I am proud of the Acorda team, whose commitment and enormous efforts have allowed us to give patients access to AMPYRA just five weeks following FDA approval. We are committed to making AMPYRA broadly available to people with MS who may benefit from therapy, and to that end, have implemented patient assistance and co-pay programs."

The AMPYRA patient assistance program is being managed by a third party organization with extensive experience in coordinating patient benefits. People with MS who meet certain income requirements may receive AMPYRA at no cost. People with MS participating in Medicare Part D may be eligible for financial assistance.

Acorda has also instituted a co-payment program that limits the out-of-pocket expense for eligible patients with private insurance to $40 for a one-month prescription, where allowed by law.

For more information about AMPYRA, including the patient assistance and co-pay programs, healthcare professionals and people with MS can contact AMPYRA Patient Support Services at 888-881-1918.

AMPYRA Patient Support Services will also work with healthcare professionals to process prescriptions and coordinate with insurance carriers to facilitate coverage. AMPYRA is available only through a network of specialty pharmacy providers that will provide the medication to patients by mail. AMPYRA will not be available in retail pharmacies.

AMPYRA Patient Support Services is available from 8:00 a.m. to 8:00 p.m. Eastern Time at 888-881-1918. For full U.S. Prescribing Information and Medication Guide, please visit:http://www.AMPYRA.com.


View here for more information on Ampyra

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Sunday, February 28, 2010

Stem Cell Debate Isn’t About Ideology

By Marion D. Thorpe, Jr. MD MPH

The polarizing ideology surrounding stem cell usage leaves very little room for thoughtful discussion. All too often the mainstream media frames this matter in such a way that either you support stem cell research to cure cancer, heart disease, diabetes, Parkinson's and Alzheimer's - or you're a Neanderthal, opposed to medical progress and dismissive of human suffering. That's pure nonsense. It's far more complicated.

Most agree that stem cells are wonderfully versatile, with great potential to transform themselves within the human body and advance treatments and cures for many diseases. Beyond that, there are actually three important stem cell debates going on. We need to come as close as we can to getting each one right.

The morality debate. Not all stem cells are created equal. There are embryonic stem cells taken from "discarded" human embryos, stem cells extracted from a delivered baby's umbilical cord with no risk to the donor, and adult stem cells derived from skin, organs and other parts of the body with little risk to the donor.

The Rev. Tadeusz Pacholczyk, Director of Education at the National Catholic Bioethics Center, puts the moral argument against using embryonic stem cells this way: "(Clearly) this research exploits younger humans, with lethal consequences, to address the needs of older and wealthier humans. The human embryo is being slowly transformed before our eyes into a commodity to be exploited, a kind of raw material to be utilized on the way to making a brilliant career as a scientist, or making profits as an entrepreneur, or making treatments for myself when I'm sick."

Ruth Faden, Director of the Johns Hopkins Berman Institute of Bioethics, has a different perspective: "Those who believe that human embryos have the same moral status as the rest of us will and should continue to press their case. For most Americans, however, the president's policy strikes the right moral balance (on) reducing human suffering and improving human health.

The medical debate. With due respect to Ms. Fadden, no one has yet significantly reduced human suffering or improved human health with any stem cell, embryonic or otherwise. That jury will be out for a long time.

Continue reading from second paragraph of the medical debate


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Researchers discover possible mechanism that triggers Multiple Sclerosis


How MS attacks the body
How MS attacks the body
Adam Medical










Scientists at the Catholic University of Romeannounced Saturday (Feb. 27) that they may have identified a possible onset mechanism for Multiple Sclerosis by triggering the disease in mice.

The research by Francesco Ria at theInstitute of General Pathology and Giovanni Delogu at the Institute of Microbiology shows that they could use a non-pathogenic bacterium to cause an autoimmune disease similar to Multiple Sclerosis.

The disease was triggered in a mouse that is often used to substitute for a human model.

The research was detailed in the Journal of Immunology. Two major theories about how Multiple Sclerosis attacks the human body include: a virus hiding in the brain that causes the antiviral action, and that a virus silmiar to molecules in the central nervous system causes inflammation that ignites a reaction to the immmune system, causing the body to attack itself.

Francesco Ria, the immunologist conducting the study was quoted as saying: "We do not know what causes Multiple Sclerosis. We know that there exist a genetic factor and an environmental factor, but we do not yet posses a satisfactory theory which can explain how exactly this environmental factor works."

Source: Examiner.com


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