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Saturday, June 14, 2008

MS Trial Alert: Study of Oral Teriflunomide (HMR1726) Recruiting People at High Risk for MS Worldwide

National MS Society News
Jun 12, 2008

Investigators worldwide are recruiting people at high risk for multiple sclerosis (MS) for a study comparing two doses of oral HMR1726 (teriflunomide), an immune system-modulating agent, and inactive placebo. People at high risk for MS are those who experience a clinically isolated syndrome (CIS, a single neurological event suggestive of demyelination, such as focal weakness, numbness, coordination problems, or decrease in vision in one eye) and brain magnetic resonance imaging findings suggestive of MS. The study is sponsored by Sanofi-Aventis.

» Read More

Wednesday, June 11, 2008

MS Related News - a Comprehensive MS Patient website - Remembering that Knowledge is Power -

For some of you, reading this, I am asking you to add this to your own MS Blogs or MS website. Provide it to others in your support groups. Give it to your caregivers, doctors or friends. Let's work together to build this site giving it the absolute purpose that I intended that it should have.

MS Views and Related News. A site I created to help the MS community. Enter a place where information and knowledge are exchanged for the benefit of persons with MS and their families. Within this site you will find a link to register for our e-Newsletter, which is emailed each Thursday. Also, there are the two blogs (old and new) - where we keep our MS Archives and other important information from those e-Newsletters, a photo album, and a guestbook, where you can leave your comments. Be Empowered with MS information by visiting our site resources links and Video Library.

If you are not already receiving our e-Newsletter, please remember to sign-up to receive "Stu's Views and MS Related News". Feel good about being a part of our community. Please write to me if you have any comments or suggestions. Visit our information sponsors and give them an opportunity. If you are interested in supporting our site, big or small, please let me know.

Warm Regards, Stuart Schlossman


Tuesday, June 10, 2008

Cooling via one hand improves physical performance in heat-sensitive individuals with Multiple Sclerosis

-- 1: BMC Neurol. 2008 May 12;8:14. Links

Cooling via one hand improves physical performance in heat-sensitive individuals with Multiple Sclerosis: a preliminary study.
Grahn DA, Murray JV, Heller HC.

Department of Biological Sciences, Stanford University, Stanford, CA 94305, USA. dagrahn@Stanford.edu

BACKGROUND: Many individuals afflicted with multiple sclerosis (MS) experience a transient worsening of symptoms when body temperature increases due to ambient conditions or physical activity. Resulting symptom exacerbations can limit performance. We hypothesized that extraction of heat from the body through the subcutaneous retia venosa that underlie the palmar surfaces of the hands would reduce exercise-related heat stress and thereby increase the physical performance capacity of heat-sensitive individuals with MS.

» Read More


Treatment with an immune-suppressing drug may help people with Multiple Sclerosis

Reuters - Jun 9, 2008 5:48pm EDT
New approach promising against multiple sclerosis

By Will Dunham

WASHINGTON (Reuters) - Treatment with an immune-suppressing drug may help people with the incurable disease multiple sclerosis, researchers said on Monday.

Their small study showed that treatment with high doses of cyclophosphamide, a generic cancer drug that has been around for half a century, cut the level of disability in MS patients, improved their physical functioning and reduced the number of brain lesions related to the condition.

Nine patients were tracked for two years after getting the drug. Five of them had no signs of disease activity, and the other four showed dramatic improvement, said Dr. Douglas Kerr of Johns Hopkins University in Baltimore.

» Read More


DioGenix Discovers Gene Sets Which Correlate to Multiple Sclerosis

June 9, 2008

Will Conduct Follow-On Studies to Develop MS Diagnostics

GAITHERSBURG, Md.--(BUSINESS WIRE)--Ore Pharmaceuticals Inc. announced today that DioGenix, its molecular diagnostics subsidiary, has identified novel sets of genes that it believes will form the basis of a new assay to diagnose multiple sclerosis (MS), a disease of the central nervous system (CNS). DioGenix plans to refine these gene sets and further confirm their disease association before it begins to develop an effective commercial assay for diagnosing patients presenting with early symptoms of MS. The Company is seeking strategic alternatives to fund DioGenix’s product development efforts.

To discover these correlative gene sets, DioGenix scientists compared gene expression profiles from a genome-wide analysis of whole blood samples from MS patients, patients with alternative diseases which mimic MS and samples collected from normal donors. The scientists found statistically significant differences in gene expression between the groups, resulting in a novel gene set now covered by the Company’s recent international patent filing. This work confirmed the results of an earlier DioGenix study, based on peripheral blood mononuclear cells, announced in an October 2007 press release.

» Read More

The Chauffeur ... - a little humor for your day

A little Humor for the day:

After getting all of Pope Benedict's luggage loaded into the limo,
the driver notices the Pope still standing on the curb.
'Excuse me, Your Holiness,' says the driver, 'would you
please take your seat so we can leave?'

'Well, to tell you the truth,' says the Pope, 'they never let me
drive at the Vatican when I was a cardinal, and now that I'm Pope, I'd
really like to drive today.'

'I'm sorry, Your Holiness, but I cannot let you do that. I'd lose my
job! And what if something should happen?' protests the driver,
wishing he'd never gone to work that morning.
'Who's going to tell? Besides, there might be something extra in it
for you,' says the Pope with a smile.
Reluctantly, the driver gets in the back as the Pope climbs in behind
the wheel. The driver quickly regrets his decision when, after
exiting the airport, the Pontiff floors it, accelerating the limo to 105 mph.

'Please slow down, Your Holiness!' pleads the worried driver, but
the Pope keeps the pedal to the metal until they hear sirens. 'Oh, Dear God,
I'm gonna lose my license -- and my job!' moans the driver.
The Pope pulls over and rolls down the window as the cop
approaches, but the cop takes one look at him, goes back to his
motorcycle, and gets on the radio. 'I need to talk to the Chief,' he
says to the dispatcher.
The Chief gets on the radio and the cop tells him that he's stopped
a limo going a hundred and five.
'So bust him,' says the Chief.

'I don't think we want to do that, he's really big,' said the cop.

The Chief exclaimed, 'All the more reason!'

'No, I mean really important,' said the cop with a bit of
The Chief then asked, 'Who ya' got there, the Mayor?'

Cop: 'Bigger.'

Chief: 'The Governor?'

Cop: 'Bigger.'

Chief: 'The President?'

Cop: 'Bigger.'

'Well,' said the Chief, 'Who is it?'

Cop: 'I think it's God!'

The Chief is stumped, 'You been drinking, John?'

Cop: 'No Sir.'

Chief : 'Then what makes you think it's God?'

Cop: 'He's got the Pope as a chauffeur.'


Treating MS With IV Steroids (Pulse Therapy)

Obtained from: MS Blog Harbor

Treating MS With IV Steroids (Pulse Therapy)

Medications such as Solu-Medrol and Decadron are potent steroids that ease inflammation and are often used to treat an acute attack of multiple sclerosis.

During an acute attack of multiple sclerosis -- also called exacerbations or relapses -- there is a distinct increase in the severity of symptoms. The onset of the attack may take several days or weeks. New symptoms may appear, or your existing symptoms (such as numbness, tingling, slurred speech, or blurred vision) may flare up or worsen.

When attacks occur, you may receive Solu-Medrol or Decadron at a treatment center each day for one to five days, depending on your treatment plan.

What Can I Expect the Day of Treatment?

Plan to be at the medical center for about one hour on the day(s) of your treatment. You may receive blood tests before the treatment to monitor your complete blood count, sodium, and potassium levels.

The nurse will also check your blood pressure and pulse before and after the treatment. The medication is given by intravenous drip for 30 to 45 minutes or injected directly into a vein.

After the treatment, you can return to your normal daily activities, including driving.

Patients generally receive a one- to five-day course of intravenous treatment. Following the intravenous treatments, you will be asked to take an oral form of a steroid called prednisone. Your nurse will give you a written schedule of when and how often to take the medication.

You may also be given a prescription for a medication to reduce stomach irritation.

Are There Side Effects?

Not everyone experiences side effects from IV steroid treatment, but the most common are:

Stomach irritation, such as indigestion and heartburn

Increased energy

Rapid heartbeat

Flushing of the face, neck or chest

Feeling warm or cool

Retaining fluid (avoid table salt and salty foods)

Mood changes (euphoria, irritability, nervousness, restlessness) or mood swings

Metallic taste in the mouth



Long-term side effects of steroids may include:

Bone-thinning osteoporosis

Stomach ulcers


Weight gain



Since steroid use can increase your risk of developing osteoporosis, it is beneficial to include more dairy products into your diet while on this therapy. You can also talk with your doctor about calcium supplements with vitamin D.

Monday, June 9, 2008

What is pseudobulbar affect (PBA)?

What is pseudobulbar affect (PBA)?
PBA is a condition characterized by episodes of uncontrollable laughing and/or crying that may be inappropriate, unrelated to the situation at hand, or not expressing the person's mood. The condition is known by other terms, including emotional lability, emotional incontinence, and pathological laughing and crying.

PBA is associated with neurologic disorders that may include, but are not limited to multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), dementias including Alzheimer's disease, Parkinson's disease, stroke, and traumatic brain injury.

How many people live with PBA?
A significant percentage of patients with neurologic disorders also suffer from PBA - estimates of frequency range from 10 percent to 50 percent. More than one million people may suffer from PBA in the United States alone.

» Read More

Doubts Cast On Vitamin Supplements

Can Some (Vitamins) Do More Harm Than Good? How Much Is Too Much To Take?
As seen on CBS Healthwatch * June 7, 2008

(CBS) It seems as if there's a vitamin or supplement on the market to protect against every ill.

Some people swear by them, feeling supplements make them stronger and keep them healthier.

But The Early Show Saturday medical contributor Dr. Mallika Marshall explained that, when it comes to vitamins, too much of a good thing could be a bad idea and, with some supplements, doctors are coming to feel ANY dose may be ill-advised, with supplements pushing the dosage level into the risky range.

Vitamin and mineral supplements are, of course, a staple of a lot of people's lives.

But studies are now suggesting that some are not only unnecessary, but could be dangerous.

Of course, we all need vitamins, Marshall stresses, but only in very small amounts, and we generally get what we need from what we eat. So if you're generally healthy and eat five or more servings of fruits and vegetables a day, you're probably just fine, vitamins-wise, and you might be better off saving your money.

Some vitamins can be dangerous in high doses.

For instance, Vitamin E is touted as helping to fight cancer and heart disease. It's one of those anti-oxidants we all hear so much about. But, Marshall points out, new studies and more recent data suggest that large doses can actually increase the risk of death, not prevent it. So we are not recommending that people take Vitamin E supplements for disease prevention.

Another popular supplement for fighting certain diseases, beta-carotene, used to be thought of as helping to prevent disease, but now it appears that additional beta-carotene can actually raise the risk of heart disease and cancer.

Loading up on Vitamin C to fight off colds is also coming to be panned in the medical community. Too much Vitamin C can cause diarrhea and kidney stones, and studies don't suggest that it reduces the risk of heart disease, cancer, or even the common cold. Vitamin A, another popular choice, can actually lead to liver damage, blindness, and bone fractures in high doses.

Of course, Marshall notes, there are exceptions — people who, due to poor nutrition, underlying medical problems, or the desire to have children, need to take vitamin supplements. But again, beware — in some of these cases, taking additional vitamins can actually be harmful.

Still, there is substantial evidence, Marshall says, that taking folic acid before pregnancy and in early pregnancy can significantly reduce the risk of birth defects, especially neural tube defects such as spina bifida, in infants. So, universally, it is recommended that all women of childbearing age who might become pregnant take 800 micrograms of folic acid, or a prenatal vitamin containing folic acid, on a daily basis.

It's also generally recommended that women who are pre-menopausal, that is, entering the change of life, take 800 IU of Vitamin D and at least 1,200 mg of calcium to help prevent bone loss and osteoporosis.

When it comes to senior citizens, if they're generally healthy and eat a proper diet, they may not need vitamin supplements. But many older adults often suffer from poor nutrition and little sun exposure. Many could probably benefit from taking a daily multivitamin that will give them additional Vitamins D and B.

Also, it's not a bad idea for vegetarians, especially vegans, to take a daily multivitamin, since they could be deficient in certain vitamins, such as B-12, found primarily in meats.

And alcoholics are often deficient in Vitamins like A, B, C and folic acid, so they may benefit from a multivitamin, as well.

Sunday, June 8, 2008

Resource Links for those with MS

Obtained from MSWorld:


We have compiled the following information from reliable sources and hope you’ll find this a good place for referrals and to get your questions answered.

Social Security Disability: Information regarding SS Disability from Rich Feingold, attorney.

See What's New: See all of the newest items posted at our website on one page.

Ways to Wellness: This section will highlight alternative ways that can improve health and well being to compliment routine treatments.

In the News: news items and reports relating to multiple sclerosis.

Clinical Trials: a listing of Clinical Trials relating to MS with links to further references.

Online Learning: features multimedia educational programs from a variety of sources relating to MS.

Care Partners: dedicated to those very special people who care for or about someone who has MS.

Treatments: There are many methods used around the world to treat MS and its varying symptoms and associated problems.

MS Links:

Accessibility/Assistive Device Dealers
General Disability
Social Security Disability

MSF Cruise For a Cause®

MSF Cruise For a Cause®

The MSF Cruise for a Cause is an innovative educational program at sea, providing the opportunity for people with MS to meet and learn from renowned MS specialists, hear motivational speakers, have fun with others with MS, and break beyond barriers – both physical and emotional – all aboard a luxury cruise ship.

Each year, hundreds of people with MS, their families, friends and well partners come together for this special event. A cutting edge educational program is presented by the country’s most renowned MS specialists. While visits to exotic ports of call are main attractions, attendees find the experience of being with others facing similar challenges to be the highlight of the trip.

Attendees pay only for the cost of their cruise. As with all MSF services, this comprehensive educational program is free of charge. The Cruise for a Cause is not a fundraising event.

Click link and then scroll to view a video that was prepared to better inform you of this cruise.

Why a Cruise?
When it comes to travel, people with MS face unique challenges. Some, especially those with mobility impairment, may feel that they can no longer travel safely or comfortably. But these hurdles can be overcome, and an accessible cruise is a great place to start.

Aboard a luxury cruise ship, a courteous and attentive staff caters to a traveler’s needs. Beautiful lodging, fine food, spectacular entertainment, and eclectic shopping are available without ever leaving the ship. Accessible excursions are often available, as well.

Always striving to meet the special needs of travelers with MS, the sponsoring travel agency works closely with the cruise line staff to provide shower chairs, scooter rentals, accessible transportation, ice for prescription medicines, and a limited number of accessible cabins.

The Program
MSF Cruise for a Cause participants may attend a variety of programs that are designed to be educational, inspirational, practical and fun.

Lectures: Specialists present the latest information in MS research, traditional and complementary treatment options, and symptom management in a relaxed setting.

Workshops: Healthcare professionals provide practical advice on living well with MS.

Motivational speeches: Celebrities, professional athletes, and patient advocates inspire attendees to break down barriers and strive to live beyond their limits.

Discussion groups: At the Port-to-Port Support Group meeting, participants share their thoughts, feelings, and advice with one another.

Question and answer sessions: Presenters answer questions from the audience in an open forum setting.

Join Us!
Many attendees have called the MSF Cruise for a Cause a life-changing experience. They have learned, not just about MS, but about themselves. They have forged lasting friendships, and brought back memories to last a lifetime.


FBI hunt pair who sold mum £15,000 multiple sclerosis 'cure'

MULTIPLE sclerosis victim Janice Reed thought her prayers had been answered when she read about a pioneering cure that injected sufferers with stem cells.

Advanced Cell Therapy promised a 90 per cent success rate and claimed one wheelchair- bound victim walked again.

But mum-of-two Janice, 47, is £15,000 out of pocket and still needs a walking stick.

And the people behind her treatment in Holland are on the run after being indicted on fraud charges by the FBI.

Janice is one of hundreds who claim ACT bosses Laura Brown and Steve Van Rooyen exploited their desperation.

She said: "I saw no improvement at all. Now I'm sure it was all just a lot of baloney."

Experts have dismissed the 'cure', in which stem cells from umbilical cords are injected to regenerate damaged nerves.

Fines The procedure is illegal in Britain and the US firm who supplied the stem cells say they were meant for research.

Hairdresser Janice, of Aberdeen, was diagnosed in 2000 with MS, which causes the nervous system to degenerate.

She paid Swiss-based ACT £15,000 for stem cell jabs in 2006 and was booked into a Rotterdam clinic run by Preventative Medicine.

Months later, the Dutch health ministry banned PMC from using stem cells over fears they were not fit for human use.

Officials warned patients risked being infected with HIV and hepatitis.

Janice said: "They were taking chances with lives."

ACT bosses Brown and Van Rooyen are wanted by the FBI on 51 fraud charges relating to former company Biomark. They are accused of making false claims about stem cell therapy and face up to 20 years in jail.

FBI assistant attorney Randy Chartash said: "This type of fraud is especially harmful as it victimises people in the most vulnerable situations and individuals who are suffering from an incurable disease."

Brown and Van Rooyen are understood to have fled to South Africa.

No one at ACT was available for comment. PMC said Janice must speak to ACT about a refund.

The firm added: "I'm not sure they are still operative."

The Multiple Sclerosis Society said hundreds of British people have paid ACT for treatment.

They added: "We would never encourage people to take this kind of treatment. We have heard stories about people selling their houses to pay for what are unproven treatments.

"They are desperate and willing to try anything."


'I saw no improvement at all..the treatment was a lot of baloney. This firm is preying on vulnerable people' MS SUFFERER JANICE REED

New drug (frampridine) to tackle MS mobility disorders

New drug to tackle MS mobility disorders
Press TV
Sat, 07 Jun 2008 19:22:25
A newly developed medicine has shown promising results in fighting mobility disorders in patients suffering from multiple sclerosis.

According to the new reports, frampridine improves walking skills in two-fifths of the patients taking the drug and positively influences leg strength in the majority of these individuals.

Findings revealed that the medication made by Acorda co. improves the condition by slowing the loss of potassium from nerve cells caused by the underlying disease.

The study reported that while the drug improved mobility in some patients, it had no effect on the overall speed of the disease in such individuals.

British MS Society researches believe the new drug has a considerable impact on the quality of life in MS patients particularly those who are still capable of walking, but at a slow pace and with difficulty.

Multiple sclerosis is an autoimmune condition in which the immune system attacks the myelin covering the nerve cells, leading to numerous physical and mental symptoms including limb weakness, blurred vision and balance problems.