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Saturday, August 11, 2012

Top Ten Most Frustrating Factors of M.S.



Top Ten Most Frustrating Factors of M.S.
By Julie Brush
I am not a survivor of a disease. I live with a disease, one which will never have an end. Here are a few major hurdles people living with M.S. have to cope with on a daily basis.
1. The road to diagnosis can be long, draining, scary and expensive as you try to make sense of a myriad of symptoms. You may wonder why your left foot is dragging or why you feel like the room is tilted or why your legs are numb. These are just a few of the symptoms that can be present prior to diagnosis.
2. Most people don’t realize that MS is one of the most expensive diseases to treat. Since there is no cure and no chance of beating this disease, you must spend your life maintaining it and these costs can be astronomical.
3. Once you are diagnosed with this disease, someone you know will inevitably say, “But you look okay.” This is a frustrating statement to hear and there are books on how to cope with this kind of attitude. While you may appear fine at that point and time, symptoms of M.S. can shift and progess day to day and even hour to hour.
4. Since so many symptoms of M.S. are invisible, i.e. pain, numbness and tingling, oftentimes your family members, loved ones and coworkers may think you are malingering. Rest assured the community impacted by this disease intimately understands the gravity of your symptoms, invisible or not.
5. Choice of treatment is a huge decision that can have several outcomes. Deciding treatment modalities like whether to use an injection, infusion or oral medications to modify the progression of the disease can be an extremely long and daunting process.
6. Symptoms can change from day to day,hour to hour and many times,within a matter of minutes.
7. Oftentimes, you can go through the five stages of grief on a daily basis. (Only a person with M.S. understands this).
8. It can hard to cope with the loss of the things you used to do and love along with constantly trying to figure out ways to modify the things you once loved, again. Whether it’s running, biking or even walking, you’re never sure what will happen next to impact the life you’ve always known.
9. The sheer unpredictability of the disease and the fact that there is no cure can be unbearable.
10. Going to bed each night,wondering if tomorrow will be the day you will wake up and not be able to walk.
article source: HealthSource

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Thursday, August 9, 2012

Teva to commence third Phase III study of laquinimod for RRMS


August 9, 2012


Teva Pharmaceutical Industries Ltd. and Active Biotech provided today an update on the clinical development program of once-daily oral laquinimod for the treatment of relapsing-remitting multiple sclerosis (RRMS). The companies are to initiate a third Phase III study of laquinimod, following the written agreement reached with the U.S. Food and Drug Administration (FDA) on the Special Protocol Assessment (SPA).    

The third Phase III laquinimod trial CONCERTO will evaluate two doses of the investigational product (0.6mg and 1.2mg) in approximately 1,800 patients for up to 24 months. The primary outcome measure will be confirmed disability progression as measured by the Expanded Disability Status Scale (EDSS).

"The results achieved in the previous Phase III trials of laquinimod support the clinical utility of this compound as a unique treatment option for multiple sclerosis," said Dr. Michael Hayden, President of Global R&D and Chief Scientific Officer, Teva Pharmaceutical Industries Ltd. "We are encouraged by the FDA's agreement on the trial design and planned analysis, and look forward to further developing laquinimod as a potential treatment option for RRMS patients."

Source: Teva Pharmaceutical Industries Ltd.



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Wednesday, August 8, 2012

How Does Multiple Sclerosis Progress? Possible Clues Discovered


August 7, 2012
Researchers have discovered that one or more substances produced by a certain type of immune cell may be involved in the progression of multiple sclerosis (MS), an autoimmune disease affecting the brain and spinal cord, may be involved caused by. The finding might lead to new, targeted treatments for those suffering from MS.

Leading researcher, Robert Lisak, M.D., a professor of neurology at Wayne State explained that B cells belong to a subset of circulating white blood cells (lymphocytes), which become immunoglobulin (antibodies) producing plasma cells when mature. However, B cells also seem to play a role in controlling other lymphocytes, particularly T cells, and help to regulate a healthy immune system.

The B cells attack the brain and spinal cord in patients with MS, which could be due to the fact that the nervous system and the meninges, the covering of the brain and spinal cord, produce substances that attract the B cells. Once within the meninges or central nervous system, the activated B cells secrete one or several substances that damage oligodendrocytes, i.e. cells that produce myelin, a protective substance, yet which do not seem to affect the immunoglobulins. The scientists observed that B cells seem to be more active in MS patients. This may explain whey these cells produce toxic substances and partially why they are attracted by the nervous system and the meninges.

Most of the brain is split into gray areas that contain neurons, and white areas, where neurons send their axons just like electrical cables carry messages, in order to communicate with other neurons and transfer messages from the brain to the muscles. The white parts of the brain have their particular color because the oligodendrocytes produce myelin, the axons' coating/insulation similar to that to the plastic coating of electrical cables, which is rich in cholesterol. Myelin accelerates communication along the axons, making it more reliable, yet when this coating degrades or is attacked, it can lead to 'leakages' or messages being sent to the wrong receptor during communication from the brain to other body parts. The team noted that oligodendrocytes also appear to play a role in other activities, which are vital for the nerve cells and their axons.

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Motorcyclist with MS Begins One Million Mile Journey for MS Awareness



Paul Pelland, a Londonderry, NH resident and former long distance motorcycle competitor has just begun the longest and hardest ride of his life, in hopes of empowering others with Multiple Sclerosisto find ways to follow their dreams and passions, while at the same time bringing public awareness about the disabling disease, and raising money for a cure.

Londonderry, New Hampshire (PRWEB) August 07, 2012
Paul, who was diagnosed with Multiple Sclerosis in 2005 after experiencing weakness and numbness in his hands as well as cognitive difficulties, will attempt to ride one million miles, attending and speaking at various MS patient events across the United States. Along the way, Paul will also be attempting various long distance challenges and records. Next spring he will attempt to break a record by riding 50,000 miles in 50 days, all in the name of MS. Before getting his diagnosis, Paul was a top ten finisher of the Ironbutt Rally, an 11 day 11,000 mile motorcycle endurance event known as, “The World’s Toughest Motorcycle Competition.”
“Long Distance Riding is never about speed, but my Endless Road Tour is definitely a race.” Paul states, “It’s a race against time. My ability clock is ticking.”


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INNOVATIVE, STATE OF THE ART SWISS TECHNOLOGY COMES TO THE UNITED STATES



By Karen Altonen and Ed Gray, OT/PTA

Therapy options have vastly improved for Parkinson’s, multiple sclerosis, stroke, balance and other patients with physical challenges.   Most recently two new physical therapy centers imported from Switzerland a proven, technologically advanced, FDA approved medical device specifically designed to help people with movement disorders.  Successfully treating patients for over 20 years in Europe, the GIGERMD® medical device was designed by Adrian Giger out of the compassion and love for a family member suffering from the limitations brought on by MS.  What is so unique about the Swiss-made GIGERMD® medical device?  The medical GIGERMD® device offers a painless way to re-educate the muscles, adjust heart rate and/or activate other muscles with less than a pound of resistance.  

The GIGERMD® medical device also incorporates active biofeedback technology to provide audio-visual stimulation in combination with coordinated movements of the limbs.  This biofeedback portion can be used to train patients how to manage or change troublesome physical symptoms using a non-invasive process.  This is what makes the GIGERMD® medical device so unique; a physical and visual stimulus that directs a patient to maximize the benefits of therapy with minimal discomfort or resistance.   




An added advantage of the GIGERMD® medical device is that it records each session so progress is measured and available for review at the end of every session.   No other therapy or medical device in the US can offer a therapy patient so much and so easily. 

Patients have travelled from New Jersey, Boston, MA; Austin, TX and Naples, FL just to have a session with the GIGERMD® medical device.  Testimonies from patients treated on the GIGERMD® medical device include statements like, “it’s the best investment I have made in my healthcare “and “We both believe the equipment was beneficial for his overall physical therapy and was as responsible as the other exercises to his improved movements.”   

Florida currently has two locations offering the GIGERMD® medical device:

Avenue Therapy in the Piper Glen Plaza, 12040 Jog Road, Boynton Beach, Phone 561-733-5083

or at the GIGERMD® Movement Therapy Center, Shops of Boca Grove, 21065 Powerline Road, Boca Raton; Phone 561-883-7800.   

Call either location for more information or to set up a visit.  

Once you try the GIGERMD® medical device you will discover for yourself the changes that are possible.    





Disclaimer: As a service and courtesy to you, the MS Views and News/Stu's Views & MS News organization wants to inform you of the product shown above.  MSVN  has had no role in developing the content of the information and we do not agree nor disagree with the content written or hope for treatment success.  To learn more of this product and what it might do for you, contact either of the numbers shown above.






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NBC TO SHARON OSBOURNE We Didn't FIRE Jack O. Over M.S. Diagnosis


NBC is lashing back at Sharon Osbourne ... claiming she was DEAD WRONG when she insisted the network fired her son from a reality show because he was recently diagnosed with Multiple Sclerosis.  

Sharon had told the media she was quitting her gig on "America's Got Talent" because NBC had "discriminated" against Jack Osbourne by dropping him from an upcoming reality show called, "Stars Earn Stripes" ... in which celebrities compete in various military-style physical challenges. 

And to make matters worse, Sharon had claimed Jack was notified by e-mail ... just two days before production was set to begin. 

But NBC claims Sharon is blowing the whole thing out of of proportion -- but admits the network decided to NOT ask Jack to participate as a contestant after going through vigorous medical screening. 

Read More


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Richard M. Cohen:A Reluctant Role Model



His Personal Story and Coping Tips
written by Debbie Serating

I recently watched an interview with Meredith Vieira and her husband,Richard Cohen,an Emmy and Peabody-award winning former television producer,journalist and reporter who has had MS since 1973,when,at that time,the standard practice of "diagnose and adios"was all that was offered: "Go home and rest,there's nothing the medical profession can do for you.Good luck."

Since then,he has become an advocate for our disease,raising awareness and asking for research contributions,and expertly using his own experiences as a guideline  for those who are battling this illness themselves.Through his skillful writing--he authored a compelling memoir called"Blindsided"(he has been legally blind since never fully recovering from optic neuritis)with such honesty and eloquence,never veering from the sobering truth of his debillitating condition-as well as an ongoing online column for AARP magazine,called Chronically Upbeat--Cohen has become a lifeline to others navigating through the rough waters of chronic illness,and is now a powerful voice for those seeking guidance.

We need his voice.

But don't call him brave or heroic,just determined to live life fully and to help fellow MS sufferers do the same.Cohen says:"There are no medals,no merit badges or awards given for coping; only a life lived well,with meaning and purpose,that are their own rewards."

Here are some other suggestions:

Stay connected.Healthy relationships and family support will sustain you.
(He and Meredith have been married for 26 years and have 3 children).

If you want your kids to become happy and secure adults,don't keep secrets at home. Be open and direct with them;they are smarter than you are, and will intuitively know when you are not being truthful.

A sense of humor always helps.Note the absurdity of it all,and laugh about it-try not to take it too seriously,and realize that progressive diseases progress.Make your peace with that as best you can.

Good advice from a wise man!

August 2012



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MS Life Insurance


In a past article, we talked about how using an expert in multiple sclerosis life insurance can save you lots of money and frustration in obtaining life insurance coverage.   What is it that MS life insurance specialists look at to help you get the best price? Here is some of what goes into underwriting for MS.
·         Type of multiple sclerosis. A person with Relapsing/Remitting Multiple Sclerosis is most likely to get a policy that will pay 100% of the death benefit from day one, and the lowest rates. For any of the Progressive types of MS, there are policies available, but they often No Exam policies that have a waiting period of 2-4 years before they pay 100% of the death benefit. Of course, there are exceptions, as sometimes people with Relapsing/Remitting MS have many serious complications, while some people with one of the Progressive types of MS have been misdiagnosed or have had no progression for years. An experienced MS life insurance specialist will sort this out and find the best rate for any scenario.

·         When diagnosed. Most life insurance companies like to wait a year after an MS diagnosis so they can see stability before making an offer. However, there are also policies that one can get shortly after being diagnosed with multiple sclerosis. Policies are higher priced when obtained in the first year, but can be replaced if/when able to obtain a more favorable rate down the road. After that first year, the rate does not depend so much on how long someone has had MS as it does the symptoms, whether there are new lesions, and frequency of exacerbations.

·         Symptoms. It seems that no two people with MS have exactly the same symptoms, and therefore underwriting for MS life insurance can be complicated. Generally, the fewer the symptoms, the better the rate will be. Symptoms considered are: need of assistance for walking, depression, incontinence, nerve pain, memory loss, frequency of exacerbations, and whether one needs home health or institutionalized care. Whether or not you are capable of working fulltime is also a consideration. There are policies to cover almost every symptom, so never assume you are uninsurable due to MS.

·         Treatment. People who have had good results with approved MS treatments such as Copaxone, Rebif, and Avonex are likely to get better rates than those who cannot tolerate treatment, or have used an unconventional treatment such as stem cell transplant. The best multiple sclerosis life insurance companies do keep up with research, so we expect that as approved treatments evolve, life insurance rates will reflect the effectiveness of the treatment.

When choosing life insurance, people with MS may find some types of coverage more available, or more suitable, for their situation than others. That is a whole blog to itself. Just know that there are professionals out there who know what they are talking about when it comes to MS Life Insurance. You are not alone, you are not unique, and you can get responsible and money saving advice.

For more information, contact Peggy Mace, COO of Outlook Life, at peg@outlooklife.com


The above message has been provided for informational purpose





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Tuesday, August 7, 2012

MS - A DAY IN THE LIFE - a Patient's story


August 6, 2012


The below diary piece is my effort to show how much work combating a progressive disease can require.  It’s not the way, it’s just my way. This isn’t to brag or to make anyone feel inadequate or unproductive, though I suspect many of you will relate to certain aspects of this experience. We’ve all got to fight this thing any way we can.

9 am: Awakened by alarm, sit up in bed, drag the morning drugs out of my nightstand. Begin the day by taking one Ampyra, two Mycophenelate (the drug intended to aid with organ transplant that is supposed to help slow the progression of MS). Scooter to bathroom, empty bladder. Take first Tizanidine tablet of day.

Have breakfast of low sugar, high fiber cereal with soymilk. Fresh berries if they are available. Go back to bedroom/office, call insurance company, drug companies as required. This can suck up an hour of a typical morning. Depending on the day, I will use some of the morning for life coaching. Between 11 am and 12 pm, I head over to the gym, located conveniently down the block from my apartment.  I spend 1 ½ - 2 hours using a variety of machines to maintain my strength. 




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Monday, August 6, 2012

NIH researchers implicate unique cell type in multiple sclerosis



Researchers at the National Institutes of Health have found evidence that a unique type of immune cell contributes to multiple sclerosis (MS). Their discovery helps define the effects of one of the newest drugs under investigation for treating MS — daclizumab — and could lead to a new class of drugs for treating MS and other autoimmune disorders.

In these disorders, the immune system turns against the body's own tissues. Ongoing clinical trials have shown that daclizumab appears to help quiet the autoimmune response in MS patients, but its precise effects on the legions of cells that make up the immune system are not fully understood.

The new study, published in Science Translational Medicine, shows that one effect of daclizumab is to thin the ranks of lymphoid tissue inducer (LTi) cells. These cells are known to promote the development of lymph nodes and related tissues during fetal life, but their role during adulthood has been unclear. The new study marks the first time that LTi cells have been implicated in any human autoimmune disorder.

"While further study is required to confirm the role of LTi cells in autoimmunity, our results point to the cells as a promising target for the development of new drugs to treat autoimmune disorders," said Bibiana Bielekova, M.D., an investigator at NIH's National Institute of Neurological Disorders and Stroke (NINDS).

Dr. Bielekova and her team found that among MS patients participating in clinical trials of daclizumab, the number of LTi cells was elevated in patients not receiving daclizumab compared to those on the drug. Patients receiving daclizumab also had reduced signs of inflammation in the cerebrospinal fluid (CSF) that surrounds the brain. And the researchers found that daclizumab appears to steer the body away from producing LTi cells, in favor of another cell type that counteracts autoimmunity.




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Sharon Osbourne Quits America’s Got Talent, Says Son Jack Was Fired From New Show Due To M.S.



Aug 6, 2012

Who knew reality TV could cause such heartache? Other than anyone who’s seen The Challenge: Battle of the Exes? Earlier today Sharon Osbourne declared that she’s leavingAmerica’s Got Talent, alleging that NBC fired her son Jack Osbourne from a new reality show due to his multiple sclerosis diagnosis. “I just can’t be fake,” Sharon told the New York Post. “It’s discrimination, and it was badly handled.”
Apparently Ozzy’s son was scheduled to appear on the upcoming Stars Earn Stripes, a show in which celebs take on military training exercises. According to Sharon, the show dumped Jack two days before he was set to film…after he publicly discussed his illness. “They can’t make me do something I don’t want to do,” she says of her departure. “All they can do is stop me from being a judge on another network for five years.” Joke’s on you, NBC! In five years, everything on TV will be a reality show. Sharon will be judging who Wants To Be The Vice President Of The United States? in 2020, and laughing all the way to the space bank!
According to NBC, however, Sharon’s version of the story might not be the whole picture. “He was somebody we were in talks with,” Stars producer David Hurwitz said of Jack in July, and even the Osbournes cop to the fact that Jack didn’t have a signed contract with the network. On the other hand, Jack offered to buy his own insurance policy for the show and was denied, while Hurowitz did insist, “The rigors of the show were too intense for him.” Call us crazy, but we’re pretty sure Jack Osbourne wouldn’t sign up for a TV show he was physically unable to take part in. Reality stars are crazy, but not “I know the paramedics are going to have to carry me off this tire course but I just don’t care” crazy.


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Sunday, August 5, 2012

Does Applying for Life Insurance Stress You Out?




Trying to shop for life insurance when you have multiple sclerosis can be a daunting task. If you don’t know much about life insurance and your agent doesn’t know much about MS, the process can sometimes be devastating. But that does not have to be the reality. There are experts in multiple sclerosis life insurance who can help you get affordable life insurance without it being a traumatic event.
Peggy Mace, COO of Outlook Life, states, “MS is a complicated disease. Some life insurance companies understand it, some don’t. Some are willing to charge a fair premium for MS Life Insurance; some do not even want people with MS to apply for their policies. People with MS must use an agency that carries lots of different companies, and knows which companies are best for each type and degree of MS, to find their best life insurance rate. That is Outlook Life’s specialty.”
The rates for MS Life Insurance depend on many different variables which will be covered in detail in a future article. But the bottom line is, policies that that ask no health questions at all are going to have the highest prices and most restrictions. For insurance companies to charge the lowest possible rates, they ask medical details. Often, this includes an exam and medical records, although for some MS cases, there are No Exam life insurance policies that are reasonably priced. 
You need a life insurance professional who knows what to ask, how to interpret that and put you with the right company, and then will represent you so that your policy ends up being rated as good as possible. People with multiple sclerosis are often frustrated that they get rated up at all, when they may be healthier than most people their age. But as Peg says, “Even someone with perfect health, whose father survived a heart attack at age 59, will pay much higher rates than others with perfect health. There is no way around paying more, but agencies that specialize in multiple sclerosis life insurance can help you pay a lot less.”

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Lifestyle changes show positive results in combatting Multiple Sclerosis



August 2012
Sitting in the sun, getting regular exercise and spending some time doing yoga has proven to have positive effects on people suffering from Multiple Sclerosis, according to a study in Australia.
Most of the benefits have been suggested and known to MS patients, but this is proof that certain lifestyle changes have truly improved the lives of people with the disease.
Some of the changes include
* medicinal doses of Vitamin D,
* regular exposure to sunlight,
* regular exercise,
* Omega-3 fatty acids,
* low saturated fat diet,
* largely plant-based whole foods,
* a diet of fish,
* any stress reducing activity,
* regular meditation and
* yoga.
These were all elements used in a retreat program tried in Western Australia by a team of doctors and research assistants.
Published in the international journal of Neurological Sciences, the study reports: "Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with Multiple Sclerosis."
Conducted by Prof. George Jelinek, who himself has had a diagnosis of MS for 13 years, there are 300 people on the study over five years.
Results after one year showed a median improvement of 11.3 per cent in overall quality of life and after five years this percentage rose to 19.5 per cent.


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