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Friday, August 21, 2009
Source: Carnival of Bloggers
IFnot yet registered to be receiving our weekly MS related e-newsletter, please visit our website, to register: http://www.msviewsandnews.org - thank you
Everyday Tips When Living with Primary-Progressive Multiple Sclerosis
featuring Shelley Peterman Schwarz
This four-part webcast series explores:
- Your Kitchen and Cooking
- Your Bathroom and Grooming
- Your Bedroom and Dressing
- Staying Connected
Source : National MS Society
He IS the Webmaster for the greatest little charity in the world.
The Multiple Sclerosis Resource Centre - http://www.msrc.co.uk
Visit his personal site Squiffy's House of Fun - Laughter for Multiple Sclerosis -
Also to visit his StumbleUpon blog: http://www.stumbleupon.com/stumbler/squiffy2/
Thanks in advance and tell everyone you know! squiffs xx
UK NEWS : Higgy's Heroes X-treme Challenge! Running from John O’Groats to Lands End (871 miles) in 16 DAYS for MSRC
Location: John O'Groats to
Date: Commences 12th September
At MSRC, we are constantly amazed and impressed at the lengths some people will go to raise funds and raise MS Awareness but even we are speechless at this one…….
On Saturday 12th September, Simon Barnes from Stroud will be taking on his toughest challenge yet.
Running from John O'Groats to
You can view Simon's route plan here - http://www.msrc.co.uk/downloads/Simonbarnesroute.pdf
Yes, that's right; he is going to RUN from one end of the
That's an average of nearly 55 miles a day!
Simon is busy making last minute preparations to his challenge, not least of all preparing himself mentally for what lies ahead and we are hoping that lots of you will show your support.
How you can help:
• If you live in the area or close to Simon's route, could you get a group together to give Simon a much needed cheer and encouragement as he runs through your town?
• Are you or do you know a physiotherapist who can offer a much needed massage at the end of his daily run?
• Could you send Simon a message of support via MSRC that we can forward to him each evening?
You can also support Simon's incredible journey by donating at http://www.justgiving.com/sibar/
You can also donate by text message. Text "Higgy" to 88600
Text cost £2.50 and £1.51 will go to MSRC. You will receive 2 texts at a total cost of £2.50 and £1.51 will go to the charity.
To view more about Simon's extraordinary run click here: http://www.youtube.com/watch?v=ZothCiu8TWM
Thursday, August 20, 2009
Updated: Aug. 20, 2009
DURHAM COUNTY, N.C.
The National Multiple Sclerosis Society has recently committed $15.8 million to support 45 new MS research projects as part of its $40 million international investment this year alone to spur momentum in cutting-edge MS research. More than $499,000 of these funds are allocated for Dr. Simon Gregory of Duke University. This financial commitment is the latest in the Society's relentless research effort to prevent, treat and cure MS.
Dr. Gregory is an assistant professor in the division of Medical Genetics, Department of Medicine at Duke University. His primary research revolves around the detection of genes involved in multiple sclerosis. With his research on "Defining the functional role of a novel MS susceptibility gene," he is able to further advance efforts to find a cure for MS. He joins a team of over 350 investigators in the U.S. and abroad supported by the Society who share the goal of achieving a world free of MS.Continue Reading
Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
Click this link to see a listing of international MS organizations found on the MSRC website
Buy a small charity car draw ticket & support MSRC!
Click on this link www.everyclick.com/MSRC to win a new Fiat 500 for just £2.
The Multiple Sclerosis Resource Centre (MSRC) on Facebook
http://www.msrc.co.uk - publishers of
by John R. Richert, MD
People are always asking 'What's going on in MS research?' But lately, many individuals are also adding, 'What challenges are we facing in the current economic environment?' As a response, I believe a quick update on the Society's research program — where we are now and what is required to maintain critical discovery — will not only address this question, but also let each of us know what we can do to help.
There has never been a more amazing time in MS research than now. Progress is being made at a remarkable rate, and the National MS Society's 62-year-involvement has driven much of this progress, including the six approved disease-modifying drugs and new therapeutic approaches making their way through the development process.
And even in these challenging economic times, we're continuing to propel research forward. This year alone, we're providing over $33.5 million to support 345 new and ongoing projects in our core research portfolio, plus $1.5 million for Fast Forward, our drug development subsidiary which continues to attract its own new funding streams. In addition, thanks to the efforts of our MS activists, an additional $5 million has been specifically set aside for funding MS research out of the 2009 Department of Defense budget.
At the Society, we have three clear research goals — STOP MS, REVERSE THE DAMAGE AND END MS FOREVER.
Learn more about these goals and some exciting projects making headway in this three-pronged approach >>
Wednesday, August 19, 2009
Stuart F. Schlossman, MD Dana-Farber Cancer Institute 44 Binney Street Dana 1530B Boston, MA 02115. Office phone: (617) 632-3325. Fax: (617) 632-2690 ...
The Stuart Schlossman of MS Notoriety wishes he had the brains and prestige of Stuart F..
But, Stuart Schlossman - is happy for who he is and what he has done for the Multiple Sclerosis (MS) community.
Oh and by the way Stuart Schlossman (is not a medical doctors) and only has the initials of RRMS behind his name.
This message is/was intended for all who have thought the opposite of what is true...
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Unique in what we do. Bridging the gap to all major MS Organizations.
Thank you for allowing me to enter your lives and to provide you with needed information.
Reported August 19, 2009
(Ivanhoe Newswire) -- Turning serendipity into science, researchers at the Stanford University School of Medicine have found that a safe, inexpensive drug already widely used for high blood pressure may have therapeutic value in multiple sclerosis as well.
Neurology professor Lawrence Steinman, MD, senior author of the study, cautioned that extensive clinical trial work is needed to determine if the drug, known as lisinopril, can do in humans what it does in mice. "We were able to show that all the targets for lisinopril are there and ready for therapeutic manipulation in the multiple-sclerosis lesions of human patients,” Steinman was quoted as saying. “Without that, this would be just another intriguing paper about what's possible in the mouse."
This all came about seven years ago, when Steinman learned he had high blood pressure and his doctor prescribed lisinopril, a drug used by millions of people that has an excellent safety profile. On receiving the news, Steinman went home and did a Google search on the drug. A glitch in Steinman's home computer, which he had never bothered to correct, automatically inserted the additional term "multiple sclerosis" to any keywords typed into the search field.continue reading from the Ivanhoe.com website
For those reading this on facebook, please visit our ms blog to leave comments
Tuesday, August 18, 2009
Some people with MS can develop some degree of cognitive impairment. Although brain volume loss, which can occur in people with MS, and the lesion load are associated with cognitive dysfunction, the exact mechanisms that determine this cognitive decline are not yet fully understood. In this article the authors have shown that the brain volume loss in deeper regions of the brain seems to play a more important role in determining cognitive impairment in people with MS than the total lesion load.
>> Read More
summary: MS is characterised by the presence of lesions in the white matter of the brain and the spinal cord. These lesions can be observed by conventional MRI techniques and are required for the diagnosis of MS. However, at the time of the onset of MS symptoms the MRI scan in some people is considered normal, without any lesion in the white matter. When this happens, the diagnosis of MS can be delayed. Although MS is a disease traditionally considered as predominantly affecting the white matter, the involvement of the grey matter has been shown to be important and related to clinical progression. The authors studied four people with symptoms suggestive of MS, who had normal MRI results, using a new MRI technique, double inversion recovery (DIR), They found that, despite having an apparently normal MRI result, all four people had lesions located in the cerebral cortex, which were shown by the DIR technique. From a pathological and diagnostic perspective, these findings may be very important.
Click here to continue
Click here to read more
By Cherie C. Binns RN BS MSCN
Lately, it seems I have been hearing from a number of folks who read this website as well as on MS Forums and Chat rooms that they have gone off all therapy for MS because “the treatment is worse than the disease”. Some are even refusing MRIs to document whether their illness is stable, progressing or may not even be present. Most have refused LPs (lumbar punctures) to confirm that they have MS because of potential dangers associated with the procedure (pain with the procedure, spinal headache, potential need for blood patch, etc).
I started with MS long before we had treatment for the illness and diagnosis was difficult to pin down because docs did not want to “pronounce a death sentence” on a young adult when they might live a fairly normal life if they were oblivious to the illness’ presence. For 19 years, I had classic relapses and remissions with vision loss, spasticity, numbness and tingling, incredible fatigue, cognitive and emotional symptoms, and bladder/bowel symptoms. My caring doctors wrote this off to stress since I was a mother of two young and active children and I worked second and third shift so my husband could work days and one of us always be with the children. So on top of all this, I was sleep deprived and my one stable adult relationship was compromised by work schedules.Continue reading this exceptional exposé from our website
scroll down to Treatment Worse than MS?
After reading Cherie's story, please come back here, to leave comments.
Explaining your MS to your friends is tough. They don't understand, they don't get it, and they are sometimes as confused as you are about the whole thing.
Here are two brave guys who have recently explained their disease to friends via YouTube.
Philip Browder, aka Masta Flipp, told his friends, family and fans this week that he has Multiple Sclerosis.
He explains his absence from the Internet, his symptoms, his loss of eyesight and limitations in his limbs, and what the possible next steps will be with his treatments.
He's a brave man, with a young son and supportive family.
He explains the illness in clear and concise terms, as baffling as it is to him.
I wrote to him and he has been surprised and delighted about the outpouring of support. He says he's doing fine, and he has a doctor he thinks is giving him the right advice about the next steps.
The story is touching and the video is wonderful. Good luck to you Philip.
Also below is a video blog of a guy named Gav in the United Kingdom. He is recently diagnosed, at 25, and with some wit and circumspection, explains what he is going through with the illness.FIND BOTH YOU TUBE Videos by clicking here, to revert to the examiner.com site
Additionally, the first video, was placed on our website a few weeks ago.
You can view it by visiting the MS Views and News website
Or, Join Our Cause (MS Views and News) by clicking this link
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On our website's homepage (http://www.msviewsandnews.org), you will find a link to register for our website and weekly publication of "Stu's Views and MS Related News", an MS e-Newsletter.
Other features of the MS Views and News website includes:
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where you will find easy-to-read MS articles. Thru this blog you will have access to many other MS informational resources and organizations as well as other MS bloggers. Find the category listings and other links found on the right side column of this blog to help you to better understand Multiple Sclerosis.
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revised – August 2009
Monday, August 17, 2009
Release Date: August 17, 2009
BUFFALO, N.Y. -- Persons with multiple sclerosis who smoked for a little as six months during their lifetime had more destruction of brain tissue and more brain atrophy than MS patients who never smoked, a study by neuroimaging specialists at the University at Buffalo has shown.
Research published in the Aug. 18, 2009, issue of Neurology®, the medical journal of the American Academy of Neurology, showed that "ever-smokers" had more brain lesions and greater loss of brain volume, as well as higher scores on the Expanded Disability Status Scale (EDSS), than MS patients who had no history of smoking.
Cigarette smoking is a compelling risk factor linked to the development and worsening of multiple sclerosis, according to research conducted by Robert Zivadinov.
A study focusing on family members of people with MS with moderate to severe physical disabilities highlights the unique demographics of this population and their need for support. Health care researcher Robert Buchanan, PhD (Mississippi State University) and colleagues published their results in the July 2009 issue of Disability & Rehabilitation. This study was funded by the National MS Society.
Background: Studies suggest that at any one time, an estimated 30 percent of people with MS require assistance and care at home, and that about 80 percent of that care is provided by informal, unpaid care givers who are usually family members. This type of care is important if it helps people remain in their homes rather than move to a nursing home. To better understand the informal care provided to people with moderate to severe physical disabilities and other aspects of long-term care related to multiple sclerosis, the National MS Society released a request for research proposals on this topic under the auspices of its Health Care Delivery and Policy Research Program. Dr. Buchanan’s team received funding to conduct studies of long-term care issues including a study of informal care-giving in the home.
Click here to continue reading direct from the National MS Society.
A three-part video webcast series focusing on primary progressive MS.
Read articles on SPMS and PPMS found on this blog, by clicking here.
When the page opens, scroll to view the various postings.
For some it is cognitive issues while for others it's all about mobility or vision and yet there are those too, who suffer from pain. It may not be everyday but enough to know there is a problem.
Also there are those who suffer from combinations-of, each mentioned above.
By clicking this link, you will be able to explore various articles already posted to this blog about Pain and it's effect on those with MS.
I tend to remain clear of the MS Pain topic, because I suffer from pain. Various types and attacking various portions of my body in various ways. I have always felt that if I did not discuss my pain, then it wouldn't hurt.. I could speak about Johnny or Jane's (his or her ) pain(s) but not about mine.
But being how I have been feeling the last few days, I figured, sure why not, let's bring it up and out into the open again..... Then I can hurt, and others will know: that I am what I am...
Have a comment? Please try to leave this on our blog site, by clicking here
Since he was a teenager, Peter Leeds has suffered painful attacks that render his hands and feet crippled and numb.
He had no idea he has multiple sclerosis, a debilitating disease that plagues the central nervous system, leading to physical and cognitive disabilities.
"I'd wake up and my toes and fingers would be numb," he said. "The numbness would creep up my legs, creep up my arms, until it took me over, making me numb from the neck down."
Suffering attacks at least once a year, it wasn't until four years ago, when Leeds was 31 years old, that he was diagnosed with MS.
Shortly after, as Leeds lay sobbing on the floor, his wife asked him if he was going to die.
He couldn't answer. He didn't know anything about the prognosis or treatments.
Leeds, a Toronto resident, has benign relapse-remitting MS, which is characterized by unpredictable, yet clear, attacks.
Symptoms can begin to appear over a few hours or days, and last for days or months. Between attacks, the body can recover almost completely.
It's All About MEE. That's the motto of the MSF's educational programs, including the MSF Cruise for a Cause. Our goal is to Motivate, Educate, and Empower you. In that spirit, we'd like you to help select the itineraries for our future cruises. Where would you like to go?
Let us know know by participating in a short survey. Completing the survey will take approximately two minutes, and will help us to determine which cruises our attendees would most enjoy.
Sponsor Reports Positive Results of Clinical Trial of Zenvia™ for Pseudobulbar Affect (Uncontrollable Laughing and/or Crying)
Click here to continue reading from the second paragraph
It only lists drug therapies and does not deal with other forms of therapy
The list is by no means complete and new treatments are being researched and coming into use all the time. It should be emphasized that none of these drugs are a "cure" for either MS nor for any of its symptoms. The only medications available at the moment either slow down the course of the disease at best or are palliative on its symptoms.
By Eva von Schaper
Aug. 17 (Bloomberg) -- Novartis AG won U.S. Food and Drug Administration approval to sell its Extavia multiple sclerosis treatment, its brand of Bayer AG’s Betaseron.
Extavia, a form of interferon beta-1b, can be used in patients with early and relapsing forms of multiple sclerosis, Basel, Switzerland-based Novartis said in a statement today.
Selling the treatment is a strategic step that allows Novartis to establish itself in the multiple sclerosis community before introducing its potentially best-selling FTY720 MS pill. The company aims for at least $1 billion in sales for its multiple sclerosis franchise, Joe Jimenez, the head of Novartis’ drug unit, said in an interview before the approval. Novartis plans to set up a network of sales people, nurses, as well as support hotlines to help sell Extavia and “build our commercial capability,” Jimenez said.
Continue to read from Bloomberg.com