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Friday, August 1, 2008

Make Fitness Part of Your Personal Health Equation!

Made available from the MS Lifelines e-Newsletter of July 2008

Make Fitness Part of Your Personal Health Equation!

Eat healthy. Get adequate rest. Do what you can to reduce stress.

Each of these activities represents a key component of your personal health equation. Another critical element of this equation is the importance of proper physical fitness.

"Many people with relapsing MS experience symptoms such as fatigue and mobility issues," explains Brian Hutchinson PT, MSCS, President and CEO of The Heuga Center for Multiple Sclerosis. "By staying active and fit, you give yourself a better opportunity to maintain or, in some instances, improve your current level of health."

To help you get more active or, if you're already physically fit, potentially improve your current exercise routine, Brian has provided the following fitness tips.

[Please Note: Talk with your doctor before beginning any kind of exercise program. Your physician can create a regimen that will work best for you or recommend another professional who can offer you proper guidance.]

Everyday Activities Can Produce Great Results

Exercise is not simply lifting weights and running on treadmills. It comprises all the physical activities you do in a day — walking to the bus stop, carrying the laundry basket into the other room, taking the stairs instead of the elevator at work.

"When it comes to gaining the benefits of physical activity, consistency is key," says Brian. "So, try to pay attention and track your daily activities. Maybe use a pedometer to count your steps"

And, remember, no matter what you do, every physical activity counts, so give yourself credit.

Building a Regimen — Step-by-Step

According to Brian, there are four basic steps you should take when creating an exercise program.


Establish your goal — This is very important. Make sure you have a purpose — whether it is to improve your time in a 5K, build strength/flexibility for your golf game, or to lose a few pounds.


Make a plan — Work with your doctor, nurse or rehabilitation professional to develop a new program or adapt your current exercise regimen. The key is to create a balanced program that will fit your lifestyle and help you reach your goal.


Identify potential barriers — If you want to include swimming as a part of your regimen, but the closest pool is 20 miles away, then you may need to adjust your day-to-day plan. Maybe make the trek to the pool once or twice a week, and take a brisk walk or ride a stationary bicycle on some of the other days. Remember, there are always options!


Track your progress — To know where you're going, it's important to remember where you've been. After you finish each day's workout, take note of your performance. This can include facts, figures, and your own thoughts. By tracking your progress, you can feel good about your improvement and, eventually, establish new goals.

Learn some additional tips from Brian that can help you stay fit and healthy

One of a Kind Service Designed for People Like You

MS LifeLines Access Made Simple program celebrates its one year anniversary, and continues to help people with relapsing MS get affordable access to Rebif(R) (interferon beta-1a) therapy.

"Dealing with a diagnosis of relapsing MS is extremely overwhelming, and to be told my insurance coverage might prevent me from taking the treatment I needed was devastating. The MS LifeLines Access Made Simple program helped me get the treatment I needed for $50 a month, less than my expected co-pay, and supported me through a very difficult time in my life."

— Victoria, MS LifeLines Ambassador, taking Rebif

For more support, call us, toll free, at 1-877-447-3243,

or visit


MS Related: Silver Mercury Fillings FDA Warning: Dangerous Vapor Whenever You Chew

Post Chronicle
Published July 31, 2008

Silver Mercury Fillings FDA Warning: Dangerous Vapor Whenever You Chew
by Jim Brogan

MERCURY fillings are now being declared potentially dangerous by the United States Food and Drug Administration - and millions of Americans have them.

It has been discovered that if you have silver mercury fillings, you could be releasing potentially harmful and dangerous vapors into your lungs every time you chew

Campaigners opposed to the use of mercury fillings, now proving to be potentially toxic, are blaming several conditions on the fillings, including the life-altering condition 'Multiple Sclerosis'.

Fatigue, depression, heart conditions, Alzheimer's disease, diseases of the central nervous system, high blood pressure and infertility.

Mercury fillings also pose a serious risk to the central nervous system of developing fetuses in pregnant women.

Mercury vapor, when released in chewing, is passed into the organs and bloodstream in small amounts.


Newly Updated Details on the Two New Cases of PML Develop in People with MS Taking Tysabri

Information obtained from the Nat'l MS Society website

Aug 01, 2008

Two New Cases of PML Develop in People with MS Taking Tysabri

Biogen Idec and Elan Pharmaceuticals informed drug regulatory authorities about two new confirmed cases of PML in individuals who were taking Tysabri® (natalizumab) as a monotherapy (not in combination with other therapies). PML (progressive multifocal leukoencephalopathy) is a viral infection of the brain that usually leads to death or severe disability. Although FDA prescribing information includes a black box warning about the risk of PML, the three previous cases of PML that occurred in the context of clinical trials were in patients who had taken Tysabri in association with other immune-modulating or immune-suppressing medications.

Details: The companies held a conference call for prescribers and investors to provide details about the two cases, both of which occurred in European males. One had received Tysabri as a first line therapy because of the aggressive nature of his disease, and had been on Tysabri alone for 17 months before developing a slowly progressive focal twitching and weakness in one arm. Brain MRI showed a non-typical lesion but his spinal fluid was negative for JC virus until it was done a second time. He received five courses of plasma exchange and is currently stable and at home.

» Read More


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Single-Dose Experimental IV Drug “RTL1000” Recruiting MS Patients at five sites nationwide

Obtained from the National MS Society

Jul 18, 2008 --- Click:
MS Trial Alert - Single-Dose Experimental IV Drug “RTL1000” Recruiting MS Patients
at Five Sites Nationwide

FDA recommendations for cardiac monitoring of patients with multiple sclerosis (MS) who are treated with Novantrone

Information contributed by Cherie C. Binns RN BS MSCN
Medscape Medical News

Medscape Alerts

Additional Cardiac Monitoring for Patients on Mitoxantrone - from Heartwire
— a professional news service of WebMD

Sue Hughes

July 30, 2008 — The FDA has issued an alert informing healthcare professionals about additional recommendations for cardiac monitoring of patients with multiple sclerosis (MS) who are treated with mitoxantrone (marketed as Novantrone and as generics) [1].

In 2005, the labeling for mitoxantrone was changed to recommend that left ventricular ejection fraction (LVEF) be evaluated before initiating treatment and before administering each dose of mitoxantrone to patients with MS. These changes were established in response to postmarketing and case reports in the medical literature that described decreases in LVEF or frank congestive heart failure in patients with MS who had received cumulative doses of mitoxantrone that were lower than 100 mg/m2.

» Read More


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Multiple Sclerosis Related: Change in "Cellcept Label" for PML

This is an FDA Drug Warning presented by ROCHE

Click this link to view this subject:

Change in CellCept label for Progressive Multifocal Leukoencephalopathy (PML) -- Dear Healthcare Professional Letter

These documents are available to you in Adobe Acrobat's .PDF format. If you do not have the Acrobat Reader installed on your computer, download the plug-in and simply follow the instructions for installation.

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When site opens, click link that reads "Click here to continue"

PI-2301 peptide copolymer for the treatment of autoimmune diseases, Including Multiple Sclerosis

Peptimmune wins new patent for peptide copolymer

1st August 2008
By Staff Writer for Pharmaceutical-Review

Peptimmune has received a US patent which protects the composition of matter for its PI-2301 peptide copolymer for the treatment of autoimmune diseases.

Peptimmune's PI-2301 is currently in a Phase Ib multiple-ascending dose, double-blind, placebo-controlled randomized study in subjects with multiple sclerosis.

» Read More


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No Effect of Preterm Birth on the Risk of Multiple Sclerosis: A Population Based Study

7th Space

Genetic and environmental factors have important roles in multiple sclerosis (MS) susceptibility. A clear parent of origin effect has been shown in several populations, perhaps resulting from factors operating during gestation.

Preterm birth (birth at less than 37 weeks gestational age) has been shown to result in long-term health problems including impaired neurological development. Here, in a population-based cohort, we investigate whether preterm birth increases the risk to subsequently develop MS.

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Multiple Sclerosis: new MRI contrast medium enables early diagnosis in animal model

Eureka Alert

Public release date: 1-Aug-2008

Multiple Sclerosis: new MRI contrast medium enables early diagnosis in animal model

Promising therapies can be initiated at an early stage; team of scientists from Heidelberg and Würzburg publishes in the journal Brain

In an animal model of multiple sclerosis (MS), neuroradiologists and neurologists of the University hospitals of Heidelberg and Würzburg have been able to visualize inflammatory tissue damage, most of which had remained unrecognized up to now, with the aid of a new contrast medium, Gadofluorine M, in magnetic resonance imaging. The scientists have published their results in the online edition of the renowned medical journal Brain.

» Read More


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Manicured Gardens in China

Contributed by Susan in Miami:

China - Showing off their Garden Manicure

SSDI Reform

Read more, from one of our MS Peers who has been battling for SSDI (Social Security Disability Income) Reform.

You may recall, when (several months ago) I sent out his petition.

His alma mater recently published an in-depth story about the petition initiative.

"Two new cases of "PML" found in Multiple Sclerosis users of Tysabri"

TWO New PML (progressive multifocal leukoencephalopathy) cases Caught VERY EARLY

(PML can cause a deadly brain infection)

Both of these cases occurred in Europe.

The Good news, if Good news is to be had
, is that these two cases were caught very early,

Other Important news concerning these new findings is that BIOGEN will NOT be removing the drug from the market as PML is listed as a side effect, a complication.

Sure the stock is presently falling but in time, this too will rebound.

Fortunately for the two patients, one is already home, and the other is still in the hospital in stable condition.

Additional information is found below and new information ( I am sure) will be coming out to the press shortly..

Bloomberg Report

Biogen, Elan Report Brain Infection in Tysabri Users (Update3)

By Tom Randall

July 31 (Bloomberg) -- Biogen Idec Inc. and Elan Corp. reported two confirmed cases of a deadly brain infection in patients taking the multiple sclerosis drug Tysabri, the first since the drug was reintroduced in the U.S. in 2006.

The report sent shares of both companies tumbling. The two patients were in the European Union, Biogen said today in a regulatory filing. The cases of the disease, progressive multifocal leukoencephalopathy, were confirmed this week, according to the company's statement.

» Read More


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The Myelin Repair Foundation is Speeding the time it take to Develop & Deliver Treatments For Those with Multiple Sclerosis

The objective of our multiple sclerosis research is to gain a deeper understanding of the natural process of myelination and how multiple sclerosis disrupts it. Through our research we are identifying therapeutic targets that may restore the myelination process and effectively remyelinate previously damaged areas in multiple sclerosis patients. Read more about our multiple sclerosis research.

>> WATCH our Progress by clicking here <<
Click the play button to watch our latest myelin repair update.

New drug offers hope for severe MS sufferers

Contributed by Gerson G.

Daily Herald By Matt Arado | Daily Herald Staff

Every day, Bloomingdale resident Erin Zwirlein grabs a cane and goes for a one-mile walk.

She returns to her townhouse tired, a bit unsteady, but happier than she ever thought possible.

Zwirlein, 36, has the worst kind of multiple sclerosis: the "secondary-progressive" type, defined by a steady and relentless worsening of the disease without any periods of improvement.

As recently as last year, the disease wouldn't let her complete a one-mile walk. Even a shorter one could leave her too tired to stand up.

The difference between then and now is that today, Zwirlein is a participant in a clinical trial of a new drug that doctors hope will be the first to offer viable relief to people with her type of MS.

» Read More


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Wednesday, July 30, 2008

Ask Your Friends About Your Multiple Sclerosis Symptoms

Do you seem "OFF" to your friends?
MS Symptoms Might Be Obvious To Others, But Missed By Us

written by: By Julie Stachowiak, Ph.D.,
Updated: July 29, 2008

For the past 15 or so years, long before my multiple sclerosis (MS) diagnosis, people would stop conversations to tell me that one of my pupils was larger than the other, usually by pointing and saying things like, “Whoa, that is freaky!” I would run to the mirror to look, but never really saw what they saw. I found out after my MS diagnosis that this was pupillary afferent defect.

My husband will occasionally mention to me that I have repeated something several times or that I have forgotten something he just said, indicating that my cognitive abilities are a little more impaired that day. He has also come to my rescue in shopping mall situations where I must have looked as perplexed as if I had just landed on another planet. On a summer night, a friend mentioned that I looked "sad" and asked if we should move inside. I perked up right away in the air conditioner, indicating that I was unknowingly experiencing some MS-related heat intolerance.

» Read More


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Hear what Tysabri Patients are saying

Hear from people who tried TYSABRI
and were glad they did


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Tuesday, July 29, 2008

And you think you have Problems -- Adult Humor - Rated "G"

Provided by Susan in Miami - ( Great sense of humor)

Rated "G" unless your mind is elsewhere

An 85-year-old man was requested by his doctor for a sperm count as part of his physical exam.

The doctor gave the man a jar and said, 'Take this jar home and bring back a semen sample tomorrow.'

The next day the 85-year-old man reappeared at the doctor's office and
gave him the jar, which was as clean and empty as it was on the previous

The doctor asked what happened and the man explained, 'Well, doc, it's
like this - first I tried with my right hand, but nothing. Then I tried with my left hand, but still nothing. Then I asked my wife for help. She tried with her right hand, then with her left, still nothing.

She tried with her mouth, first with the teeth in, then with her teeth
out, still nothing.

We even called up Arleen, the lady next door and she tried too, first with
both hands, then an armpit, and she even tried squeezing' it between her
knees, but still nothing.

The doctor was shocked! 'You asked your neighbor?'

The old man replied, 'Yep, none of us could get the jar open.'

BADA - Bing ---- Bada - Boom !!!!

Yale Researchers Find New Trigger For Autoimmune Diseases

Medical News Today
Article Date: 29 Jul 2008 - 2:00 PDT

Yale University researchers have discovered a new way that autoimmune diseases like multiple sclerosis (MS) can be triggered, they reported Monday in the journal Proceedings of the National Academy of Sciences.

Scientists have long known the molecule TGF-Beta (transforming growth factor Beta) plays a pivotal role in preventing T cells from launching an attack on the body's own tissues.

» Read More


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Bladder and/or Bowel issues vs. MS

Below, is a list of recent topics that were posted on the National MS Society website that you might find a need to read. For additional article from this portion of their site, click here.

Bladder Dysfunction (click)

Type: Page | Last Modified: 6/12/2008

Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully. Treatment strategies include dietary and fluid management, medications, and intermittent or continual catheterization (inserting a thin tube into the bladder to remove urine).


You Can...Get Control of Bladder & Bowel Issues (CLICK)

Type: Page | Last Modified: 6/12/2008

Bladder and bowel accidents are embarrassing. The good news is you can manage these issues.


Brochure - Controlling Bladder Problems (.pdf) (Click)

Type: File | Last modified: 5/28/2008

Learn how to control bladder problems in Multiple Sclerosis.


Clinical Bulletin - Bladder Dysfunction in MS (.pdf) (click)

Type: File | Last modified: 5/21/2008

Bladder dysfunction is common in individuals with MS, both with minimal symptomatology and with major impairments.


Clinical Bulletin - Surgical Management of Bladder Dysfunction (.pdf) (click)

Type: File | Last modified: 5/21/2008

Surgical procedures and management for individuals with MS and symptoms of lower genitourinary tract dysfunction. The effect of MS on the genitourinary tract ranges from bladder and sphincter dysfunction to impotence.


For more, see the link at the top of this page.

Wish to leave any comments for others reading this posting, then we welcome you to leave your message


Prevalence of sleep problems in individuals with multiple sclerosis.

Prevalence of sleep problems in individuals with multiple sclerosis.

Rehabilitation Medicine, University of Washington, Seattle, Washington, USA.

Background Sleep disturbance in multiple sclerosis has received little research attention despite the potential influence it may have on disease impact.

Objective To estimate the prevalence of sleep disorders in a large community sample of individuals with multiple sclerosis.

Methods A cross-sectional self-report survey of 1063 persons with multiple sclerosis. Sleep was assessed using the Women's Health Initiative Insomnia Rating Scale and Medical Outcomes Study Sleep measure.

Results The prevalence of sleep problems in multiple sclerosis is significantly higher than in the general population or other chronic diseases and may affect women with multiple sclerosis more than men.

Conclusion Sleep disturbance should routinely be evaluated in patients with multiple sclerosis and new interventions developed.

PMID: 18632776 [PubMed - as supplied by publisher]

Monday, July 28, 2008

Hope for MS sufferers as city scientist nears breakthrough

AN Edinburgh scientist is nearing a breakthrough that will revolutionise the treatment of Multiple Sclerosis

Edinburgh News

Published Date: 28 July 2008

AN Edinburgh scientist is nearing a breakthrough that will revolutionise the treatment of Multiple Sclerosis and change the lives of generations of future sufferers.

Edinburgh University's Professor Charles ffrench-Constant, whose work has largely been funded with £2 million from the author JK Rowling, below, is working on a way of using stem cells to halt the deterioration of sufferers.

He is carrying out tests on mice and rats to try to find a way of using the cells to repair damage to the brain.

» Read More


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Sunday, July 27, 2008

Addressing Severe MS Spasticity

Teleconference to Address Severe Spasticity
Dr. Bhupendra O. Khatri will discuss treatment options for spasticity suffered by people with MS August 12 at 7 p.m. Eastern Time (6 p.m. Central Time, 5 p.m. Mountain Time and 4 p.m. Pacific Time).

Those wishing to participate must register to receive an email with the toll-free number that will allow them to dial in.

The teleconference is free and is sponsored by Medtronic.

Register or call 1-888-743-8348.