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Saturday, August 8, 2009

Tysabri and Avonex Information for Multiple Sclerosis

For the many who email me each day, asking where to obtain information for Biogen Products such as Tysabri and Avonex, you can now find important links (based on the the high frequency of what is asked of me), found on our website's homepage.

Visit the MS Views and News website: http://www.msviewsandnews.org

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Fitness Website Flexes Its Muscle by Helping People with Disabilities

There aren't enough resources out there for people with disabilities, and it's so important to have those resources available.

Stretchingyourself.com is a brand new fitness website with a more specific purpose: to help people overcome disabilities. Designed by fitness entrepreneur Joanne Loveland, the new website provides resources for people with disabilities who want to improve their physical and mental well-being.

Danville, CA (PRWEB) August 8, 2009 -- "Helping people with disabilities is the reason I launched my website," said Joanne Loveland. "Whether someone has a serious condition like Multiple Sclerosis, or is just recovering from an accident, stroke or surgery, I want to have the resources to help them improve their lives."

Loveland's website, www.StretchingYourself.com, was launched in May 2009, and provides a wide range of products for physical and mental fitness. "The name of my website has a lot to do with what I want to accomplish, and that is encourage people to stretch themselves both physically and mentally."

Click here to continue reading


Friday, August 7, 2009

Opexa Announces Stem Cell Agreement with Leading Global Pharmaceutical Company

Press Release
Source: Opexa Therapeutics, Inc.
On Friday August 7, 2009,

THE WOODLANDS, Texas--(BUSINESS WIRE)--Opexa Therapeutics, Inc., a company developing a novel T-cell immunotherapy for multiple sclerosis (MS), today announced that it has entered into an exclusive agreement with Novartis, one of the world’s largest pharmaceutical companies, for the further development of Opexa’s novel stem cell technology. This technology, which has generated preliminary data showing the potential to generate monocyte derived islet cells from peripheral blood mononuclear cells, was in early preclinical development at Opexa.

Under the terms of the agreement, Novartis will acquire the stem cell technology from Opexa and Novartis will have full responsibility for funding and carrying out all research, development and commercialization activities.

To continue, click here

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MS Learn Online - Understanding Primary-Progressive Multiple Sclerosis

Today's new Feature Presentations:

Understanding Primary-Progressive MS
featuring John Richert, MD

Strategies, Research and Hope for Primary-Progressive MS
featuring John Richert, MD

featuring Rosalind Kalb, PhD

Click here to view the webcast, or
copy into your
browser: http://www.nationalmssociety.org/multimedia-library/webcasts--podcasts/understanding-primary-progressive-ms/index.aspx
If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.


An MS Therapy in the Pipeline: Fampridine-SR

Written by: Dr. Timothy Vollmer, medical director of the Rocky Mountain MS Center.

As MS progresses, walking can become a challenge and many people with MS are forced to use the aid of a cane, walker or wheelchair. According to recent research, 64% - 85% of people with MS have difficulty walking, and 70% report it to be the greatest symptomatic challenge that they face.

Hope for these individuals may soon be available in pill form. Fampridine-SR, a sustained-release tablet, is a selective neuronal potassium (K+) that blocks potassium channels on the surface of nerve fibers. The idea is that by blocking these channels, the conduction of nerve signals – which travel through nerve fibers – is improved, despite the myelin damage that characterizes MS. The improved nerve communication facilitates vital nerve connections that are necessary for mobility.

The thought is not that Fampridine-SR will replace standard disease modifying therapies, but rather that it will function as an add-on symptomatic treatment option for those who have difficulty walking.

» Read More


MS often has dribbling effects...

The dribble is on...

At My Odd Sock, our investigative team (me) zeros in on the minutiae of multiple sclerosis details, turning over the smallest pebbles of information, so you can enjoy your chronic disease to the fullest!

Today, we turn our attention to the bathroom.

Multiple Sclerosis does a number on the bladder by playing with its mind. By attacking the brain, MS disrupts the nerve impulses from your excretory system..toying with your urgency to go..teasing your control..making a mockery of everything you learned by the time you were three years old.

In essense, MS is potty training’s “badguy.”

Continue to read this funny look at MS Symptoms

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

Thursday, August 6, 2009

MS Action Alert: We can't afford to lose momentum. Now is the time to act.

Members of Congress will be on recess in their home districts for most of August, leaving our country's health care crisis unresolved.

But for people living with MS, the health care crisis demands action now.

So we're following Congress home. Hundreds of Society supporters and activists across the country are meeting one-on-one with lawmakers in their home districts. I'll be meeting mine here in Wisconsin.

Will you back us up? Write your lawmakers and tell them that we need health care reform this year — this issue is too critical for people living with MS and their families.


Philosophy from the Wheelchair Kamikaze

The Rants, Ruminations, and Reflections of a Mad MS Patient

By: Wheelchair Kamikaze

At What Price?

For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilĂ , 24 hours later they are completely symptom-free, their nervous systems restored to an undamaged condition, and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.

Great, right? Sign me up!

Only, there's a catch. This "cure" comes with a terrible cost: after a considerable amount of time,

Continue to read from Marc (err- Wheelchair Kamikaze's) Blog page


Elan Files Declaratory Suit Against Biogen Idec; Company Has Not Breached Tysabri® Collaboration Agreement

Just a bit of financial news for those who want to know:

August 6, 2009 -
DUBLIN - (Business Wire) Elan Corporation, plc (NYSE:ELN) today announced that it has filed suit against Biogen Idec Inc. in Federal Court in New York seeking declaratory and injunctive relief that certain aspects of Elan’s recently announced transaction with affiliates of Johnson & Johnson (the “Transaction”) comply with Elan’s Collaboration Agreement with Biogen Idec for the development and marketing of Tysabri (the “Collaboration Agreement”).

Continue by clicking here

President Obama Marks the Anniversary of the ADA by Pledging to Sign the 1st International Treaty on Disability Rights

On July 24, President Obama marked the 19th anniversary of the landmark Americans with Disabilities Act, which barred discrimination against people with disabilities, by announcing the intent of the United States to sign the International Convention on the Rights of Persons with Disabilities (CRPD). The purpose of the CRPD is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Read more at the Nat'l MS Society posting by clicking here


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Facet Biotech and Biogen Idec plan for Phase III multiple sclerosis trial

TMC.net -

Aug 06, 2009 (Datamonitor via COMTEX) -- Facet Biotech, a developer of new oncology drugs, has announced its decision, along with its partner Biogen Idec, to continue planning for the Phase III trial of daclizumab high-yield process or DAC HYP in multiple sclerosis.

Continue to read by clicking here


Wednesday, August 5, 2009

Author Stephen White's psychological thrillers draw on his experience with Multiple Sclerosis

By Mary Brophy Marcus, USA TODAY
BOULDER, Colo. — His books are sit-on-the-edge-of-your-seat, bite-your-nails-to-bits, spine-tingling.

Yet Stephen White, the best-selling author behind 16 psychological thrillers, is remarkably low-key.

The soft-spoken gentleman munching a veggie panini at one of his favorite local eateries here is a psychologist (though not a practicing one anymore), just like Alan Gregory, the psychologist protagonist in many of his novels.

As the author sips a white china cup of espresso (a self-described java junkie who says he's picky about where he imbibes it), he talks about his newest novel, The Siege, out today. He also shares a quality with another character in his books: what it's like to live with multiple sclerosis (MS), a disease of the central nervous system, which he has had for 23 years.

One of the key characters in many of his novels, Lauren Crowder, Gregory's wife, has MS, too. He says many of his fans write to him about her illness. And though White has never kept the fact that he has MS a secret, until now he has been reluctant to talk publicly about it and how it affects his life and informs his writing.

Continue to read from the USA Today Article.
A video is also available

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Tuesday, August 4, 2009

Is it MS related Optic neuritis or is it Neuromyelitis Optica

Although optic neuritis is a common clinical feature of multiple MS, it is also a common feature of the “MS variant” Neuromyelitis Optica (NMO). NMO affects the eye and the spinal cord and can be more disabling than MS. Since prognosis and treatment for MS and for NMO are different, it is crucial to differentiate between these conditions. The authors found that optical coherence tomography, a diagnostic tool used to quantify the thickness of the optic nerve, can differentiate whether optic neuritis occurs in the context of MS or NMO: the optic nerve seems to be less thick in people with NMO than people with MS.

Click here to read more

The MSIF sourced this article with the heading: Optical coherence tomography helps differentiate neuromyelitis optica and MS optic neuropathies


New option for cyclists to raise money to fight MS in Eastern Carolina

NEW BERN — A new 50-mile ride will be added to the Historic New Bern Bike MS Ride scheduled for Sept. 11–13.

The 21st annual event will be sponsored by the Eastern North Carolina Chapter of the National Multiple Sclerosis Society in New Bern for the ninth consecutive year. The ride also features route options of 30, 75 and 100 miles.

Over 2,500 participants are expected to attend this year to help raise money for the $1.7 million goal. Bike MS proceeds are used to fund research, programs, services, education and advocacy for the over 4,800 individuals living with multiple sclerosis in Eastern North Carolina.

Click here to read more


In IRAN, persons with MS, live with extreme stress and pressures

There are a several people receiving my weekly e-newsletters that live in or near the Middle East.
Countries with e-recipients of this posting and the weekly publication of Stu's Views and MS Related News, include: Egypt, Saudi Arabia, Qatar, Jordan, Lebanon, Kuwait, Iran, Turkey and Israel.
(I used to have an e-recipient in Iraq, but he's no longer stationed there)

It's the people in Iran who this posting concerns as they seem to be living with two MonSters.
Multiple Sclerosis, of course being the one that most of us care much about. But then too, they have extra stress in their lives do to their internal politcal situation caused by Ahmadinejad.

Below this line, you will read of an MS Patients own writing. It's what he/she wants the world to know of Iran. His/Her name, omitted for security reasons which he/she requires:

Hello Stuart,

I hope you're all good. Recently, you know the situation in my country and have seen many news from here that how they murder us and they have no reputation here either in Iran and in the world. Noone likes them, the dirty regime is not afraid to kill us and you probably have seen it on the news. I guess 2 days ago they arrested 3 Americans here and i hope they will be free soon, i just want to say that the government of iran is not elected by people of iran and these riots exactly show that. So, when you say they have arrested 3 Americans do not think that persian elected government has arrested 3 citizens of the U.S. I hope one day we will also have a free and friendly country with whole world and our riots will answer, up tp now 200 people have died for democracy here and to answer a hate and disguise to this government. I hope 3 Americans will be freed soon by your politicians.


Again - everybody - this was not meant to be anything political yet it does read as such. I just wanted everybody to know that yes, you may live with pressures and stress. But does it compare to what some, like "M", might be living with and having to keep his/her MS "in-check".
By the way - In case you all don't know, MS research is taking place in Iran.
Google: MS research in Iran --- It would be to our advantage if they were able to continue this research.

Leave a comment on this MS BLOG if you want to let "M" and others, know your feelings.


Monday, August 3, 2009

Relaxing and Vacationing with MS

By Cherie C. Binns - RN, BS, MSCN
Summer 2009

We are in the midst of summer with all of the fun and challenging opportunities available to us only at this time of year. Although this has been an unusual summer for many of us due to weather pattern shifts, there are still many things you can do alone or with family that are relaxing and fun.

There are some very important points to keep in mind if you are a person with MS or just if you love a person with MS.

Continue to read this article by clicking here. When the page opens, scroll down to read.

PLEASE RETURN to this Blog Page if you want to leave a comment - Thank you


Falling Risk Increases for Seniors with Multiple Sclerosis

Monday August 3, 2009
As people with multiple sclerosis age, there is an increased of falling (as with anyone as they age). This risk is higher than average because of how MS may impact balance. In a study, 394 people with MS aged 55 or older took a survey that included questions about falls. 50% of the people with MS reported falls with injuries. In other words, people with MS need to be especially careful in preventing falls and addressing bone issues such as osteoporosis to increase their bone strength (and reduce the severity of fall-related injuries).

Read more:

Source for this article: ms.about.com

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Lyme Disease and Multiple Sclerosis - One is Often Misdiagnosed as the Other

Multiple Sclerosis Patients Should Be Tested for Lyme Disease

It’s become a far too common experience. People presenting with all the symptoms of Multiple Sclerosis, getting the diagnosis (more often than not the official diagnosis they receive is “probable MS”), and undergoing treatment are not finding any improvement of their symptoms. Some notice that with the injections many MS patients take daily, their symptoms had, in fact, worsened considerably. The experience is frustrating and painful, both emotionally and physically. Why is this happening? And why so frequently?

If this is the case with you or someone you know, I strongly encourage the patient with MS or probable MS to call their primary care physician’s office and request a test for Lyme Disease.

Continue to read from the middle of the second paragraph...

Please return to this link, to leave comments


Sunday, August 2, 2009

Bridging the Gap to MS Organizations

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An MS patient seeks communcation from others with similar situation

Linda Barnett was diagnosed in 2001, and she wants others in similar situation to contact her. Here is her story, in her own words (no editing on my part):

i am 50 years old. i was dxd with ms in 2001. it wasn't until i had an exacerbation in 2002 that i actually believed it. the only treatment doctors would talk to me about were ms-approved drugs. my neurologist started me on avonex. while on the avonex, my left leg got where i couldn't feel it, or use it, it felt like it didn't belong to me. i was in virginia, and went to my mother in florida, and told her it had to be the avonex and i wanted to quit taking it. she was for my quiting as long as i used something else. i discovered the ldn website. a week after i quit taking the avonex, i began getting feeling back in my left leg and could use it. my primary care physician wrote the prescription for ldn, and i began taking it in march of 2004. my neurologist was at nmcp(portsmouth naval hospital), and since ldn was not ms-approved would not do mri's while i was on it(nmcp was real upset with me for stopping the avonex and refusing the approved drugs).

i used the ldn for the rest of 2004,2005,2006(no exacerbations in this time period), and the beginning of 2007. in april of 2007 i began seeing a different neurologist, he insisted that i begin on rebif(i had hoped he would have differing views from the other neurologist, but no)and quit taking the ldn, which i did. in sept. of 2007 i had an exacerbation that put me in a wheelchair. shortly after i went off the rebif also because for 24 hours after taking a shot the muscles in my legs where like jello. this was very problematic with my not having help and having to use a wheelchair. i also had to do selfcath. i had separated from my husband in 2005, and my son, then 9, came with me. we were in virginia beach. my parents came from florida in sept of 2008 to get my son and i and bring us to florida. here in florida, the neurologist i see had me go on copaxone in february of 2009.(i had agreed to try the copaxone because it was not an interfone-beta, as the avonex and rebif were). in july of '09, i saw a nurse practitioner at my neurologists office who gave me a prescription for ldn as long as i took it in conjunction with the copaxone. i began taking the ldn as soon as i got it, about the 2nd week of july.

and that is the way things stand now. i still believe in doing things holistically, i have been a follower of edgar cayce for years. unfortunately, i have to do what the insurance does because financially thats where i am.

linda barnett

If you can assimilate and communicate with Linda, please either leave a comment on this blog page (not facebook) or write to her directly at: lindabarnett101@yahoo.com