Marion County Multiple Sclerosis Self-Help Group, Ocala, Florida

Enjoying Life One Day at a Time!

Want to be in a magazine about Bladder Issues?

Sent from the Internet (Details)
Dear Friends (with MS)                                                           April 3, 2009
Good evening.
an editor from N E W M O B I L I T Y magazine > Website.
Contacted me to ask if I know of persons with bladder issues that might want to chat with her, to be interviewed for an upcoming magazine.


Specifically, this is what she wrote:

While I have you, so to speak, I am in the process of putting together an article on MS and bladder issues (partly based on my own recent experience). Do you know any people with MS who would be willing to speak with me about how they cope with bladder issues?
Our mag covers this topic a lot, but rarely from the viewpoint of people who have sensation in the, um, sensitive parts.
Whether Male or Female, if you have bladder issues and want to be put in contact with this person, please send a reply to me, so that I can then get you in contact with this person.
Her name (yes it's a she) and email address will be kept as confidential as well,  except to the persons with interest in contacting her, after I receive those replies.
All contact to me of this matter ( and like all other matters) will be held strictly confidential.
Best Regards,
Stuart Schlossman

Stu's News

Stu's Views and MS Related News
A product of MS Views and News, Inc.
MS Views and News is dedicated to the global collection and distribution
 of current information concerning Multiple Sclerosis. In collaboration with
other organizations, MS Views and News uses state-of-the-art communication
 channels to provide information for those affected by, or interested, in MS.
Thursday - April 2, 2009
THIS weeks  Postings:

Also found In this week's edition:
  •  A Look at MS Views and News website  
  •  Important MS Resource web links
  •  Reader Comments
  •  Herbs to NOT use

There is so much to be learned each week while reading Stu's Views and MS Related News. Remember to share this resource with others you know.
You may read this issue on our blog archive, by clicking here. Then save or bookmark this location for future use.
  THIS Archive Blog of our e-Newsletters has a new look.   Our primary website and primary blog also have new appearances...
View each and suggest or comment.

Have you ever looked at what is available at MS Views and News, website?

  • There are weblinks to connect you to major MS organization websites all around the globe.
  • There is a link to register for their weekly MS related e-newsletter called Stu's Views and MS related News.
  • There are information ads posted to the MS Views and News website that benefit the MS patient and Caregiver.
  • There is a link to their MS blog and Library of MS archives.

Find whatever you need from this one-stop source for MS information.   Click : MS VIEWS and NEWS, Inc

In the coming months, we hope to have a webinar tutorial on a "How to Use this Website" 

Meanwhile, if you have questions or information to provide to others? Send an email to:

MS Views and News Weblinks
We are regularly out on the Internet. When we find a great site we list it.

Clinical Trials Update - Feb. 2009

Welcome to this month's Clinical Trials Update email from MSAA. You are receiving this email because you have previously requested to receive emails about clinical trials, including summaries of the findings of major trials and information about trials that are recruiting participants.

Below, you will find a summary of the results of a phase II study for the drug dirucotide for relapsing-remitting MS. It is important to note that studies involving dirucotide for secondary-progressive MS continue; those results have yet to be reported.

Results Announced:
Phase II Study of Dirucotide (MBP8298) in RRMS Patients

, previously known as MBP8298, has been in clinical trials primarily for the treatment of secondary-progressive multiple sclerosis (SPMS), but also for relapsing-remitting multiple sclerosis (RRMS). On January 30, 2009, dirucotide’s developer (BioMS Medical Corp.), announced the results of MINDSET-01, an exploratory phase II clinical trial designed to evaluate the effectiveness and safety of dirucotide in patients with RRMS.

MINDSET-01 enrolled 218 patients with RRMS at 24 sites in Europe. While the treatment did not meet its primary endpoint of reducing annualized relapse rates or reducing associated secondary MRI endpoints, it did meet certain secondary endpoints relating to the progression of MS. Changes in progression were measured using the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite (MSFC) score.

In this 15-month study, dirucotide (or placebo) was given via three single intravenous injections at zero, three, and nine months. Dirucotide was generally well tolerated and no patients withdrew from the study due to side effects the most common of which were redness and burning sensation at the injection site. The study will have a 12-month active treatment, open-label extension period, to further measure the effectiveness and safety of dirucotide in RRMS patients.

Measuring progression according to the EDSS and MSFC scores are the primary and secondary outcomes in the ongoing SPMS trials, all of which are fully enrolled. These include the MAESTRO-01 (a pivotal phase III study taking place in Canada and Europe with 611 patients), the MASESTRO-02 (an open-label follow-up study with patients who have successfully completed the MAESTRO-01 trial), and the MAESTRO-03 (a pivotal phase III study taking place in the United States with 510 patients).

Dirucotide (a peptide) is a synthetic fragment of myelin basic protein (MBP). It replicates the site on the MBP molecule that is believed to be a target of attack by cells of the immune system in 65 to 75 percent of all people with MS. This treatment is believed to induce or restore immunologic tolerance to attack.

Questions about dirucotide or other clinical trials?

Individuals with questions may speak with an MSAA Helpline consultant by calling (800) 532-7667 between the hours of 8:30 am and 7 pm (ET) Mondays through Thursdays, and between 8:30 am and 5 pm (ET) on Fridays. Spanish-speaking individuals may contact a bilingual Helpline consultant by dialing extension 108.

Clinical Trials Resource Center

Remember - you can always access current information about ongoing clinical trials by visiting MSAA’s Clinical Trials Resource Center.

Fast Forward with British Co - Trying to Reverse Immune Attack in MS

Donate Now

Research News

Fast ForwardSM Announces First Investment
Fast ForwardSM, the Society’s subsidiary dedicated to speeding drug development, makes its first investment — in a British company that wants to reverse the immune attack in MS. 
Learn more >>

Getting Results

Counting Her Luck
Walking Is Getting Harder for Margy Conant, but Walk MS and a Loving Family Keep This Coloradan Moving Forward.
Meet Margy  >>

Moving Forward

Riding the Rails
Now departing for points north, south, east and west: You! People with MS are rediscovering the romance — and accessibility — of train travel. Read more in the Spring issue of MOMENTUM online.
All aboard >>

NMSS Newsletter Available on PDF

The latest issue of the National MS Society Mid Florida Chapter's newsletter, MS Connection, is now available for download.  Included in this issue is the NMSS chapter's annual report.  Please visit our website 

The National MS Society Mid Florida Chapter

Campath Shows Promise in Slowing Progression/Reversing MS - Click Below to Go to Video

Complementary Treatments for MS

Complementary Treatments for MS Have you tried any alternative or complementary treatments for your MS? Some options, like acupuncture for spasticity, vitamin D supplements, and diet and exercise changes, have proven beneficial for those with MS. In our new slideshow about complementary treatments for MS you will find helpful information about how these therapies work alongside your traditional treatments, how to know if a complementary treatment is safe and effective and how to talk openly and honestly with your doctor about integrating complementary therapies into your treatment plan. You’ll also get step-by-step instructions for trying each of these approaches, adding supplements to your diet or starting a new exercise routine. Plus, you’ll get a glimpse inside research being done on the safety and efficacy of complementary therapies and efforts underway to make these treatments mainstream. 

Rituxan fails to Slow MS

Tuesday, April 15, 2008

Rituxan Medicine for Multiple Sclerosis Fails to Slow MS (Update2)

Bloomberg News

By Luke Timmerman

April 15 (Bloomberg) -- Genentech Inc. and Biogen Idec Inc.'s cancer drug Rituxan failed to slow the disabling effects of the most difficult-to-treat form of multiple sclerosis in a large clinical trial.

Rituxan didn't reach its main goal of slowing disability for people with primary progressive multiple sclerosis after almost two years of treatment, compared with a placebo, the companies said in a statement. If the trial had succeeded, it would have made Rituxan the first drug to work against the primary progressive form of MS, or PPMS.

Rituxan, a blood-cancer drug that's also approved for rheumatoid arthritis, generated $2.29 billion in U.S. sales in 2007. It is designed to work by killing inflammatory B cells, a different approach than approved MS drugs. About 400,000 people in the U.S. have MS, and one in 10 have the primary progressive form that gradually damages nerve fibers over time without remissions, according to the National MS Society.

``While the primary results are not what we had hoped, we continue to believe in the potential of B cell therapy for patients living with MS,'' said Michael Panzara, Biogen's vice president and chief medical officer of its neurology strategic business unit.

Genentech, majority-owned by Switzerland's Roche Holding AG, fell 71 cents to $73.98 at 10:16 a.m. on the New York Stock Exchange. Cambridge, Massachusetts-based Biogen, a co-promoter of the drug, rose 35 cents to $64.07 on the Nasdaq Stock Market.

Revenue Opportunity

``This would have presented a revenue opportunity of more than 500 million Swiss francs for Roche but was not included in our model or consensus estimates,'' Deutsche Bank analysts including Michael Leuchten said in a note to investors today. ``PPMS is a tough part of MS to treat and nothing has worked in this setting so far.''

Multiple sclerosis is diagnosed when the body's immune system goes awry and begins attacking the fatty insulating tissue around nerve fibers, called myelin, according to the National MS Society.

The Rituxan trial, called Olympus, followed 439 patients for two years after they took an infusion of Rituxan or a placebo. Patients took a repeat course of Rituxan every six months, said Craig Smith, neurology lead clinical scientist in the immunology department at Genentech, in a telephone interview before the announcement.

Side Effects

Patients were monitored for the status of their disability, to see, for example, whether they were losing their ability to walk, see clearly, or maintain strength in their arms, Smith said. A secondary goal of the study looked at whether the drug reduced brain lesions.

More patients had serious side effects on Rituxan than on placebo, Genentech and Biogen said. The rate of serious side effects was about 16.4 percent in the Rituxan group, compared with 13.6 percent on placebo. About 4.5 percent of Rituxan patients had serious infections, compared with 1 percent on placebo. There was some evidence that the drug was working biologically, although the companies didn't specify how much in the statement.

Genentech and Biogen plan to continue analyzing the results and submit them at a future medical meeting, the companies said.

Double Vision

People in the trial were about 48 years old on average, and had been diagnosed with primary progressive MS four to 10 years before enrolling in the study, Smith said. They entered the study with an average disability score of 4 on a scale of 1 to 10, meaning they lacked some coordination, or had some double vision or weakness, although were still able to walk without assistance, he said.

Previously, Rituxan was studied for patients with the most common form of MS, the relapsing, remitting form. That study, called Hermes, found that one in five patients on Rituxan relapsed, while twice as many on placebo had a recurrence in a 48-week clinical trial, according to research published in February in the New England Journal of Medicine.

Existing drugs, including Biogen's Avonex, Bayer AG's Betaseron, Merck KGaA's Rebif and Teva Pharmaceutical Industries Ltd.'s Copaxone, work differently than Rituxan by blunting the attack of immune system T cells. None of the drugs have shown a benefit for patients with the primary progressive form of the disease, Smith said.

Next Steps

The market for MS drugs exceeded $5.5 billion in 2006 and is expected to double by 2013, according to market-research firm Frost & Sullivan in New York. Rituxan costs $20,514 a year for two infusions for patients with rheumatoid arthritis, said Genentech spokeswoman Nikki Levy.

``Right now we are reviewing all the data from Olympus and determining next steps regarding our development program,'' Levy said yesterday in an e-mail.

The company still plans a mid-stage clinical trial of ocrelizumab, a second-generation drug that blocks the same protein on B cells as Rituxan. The newer drug will be studied against the relapsing, remitting form of MS, Levy said.

MAESTRO-03 - Pivotal Phase III for treatment of Secondary Progressive MS

Tuesday, April 15, 2008

Good News for the MAESTRO-03 - pivotal phase III clinical trial of MBP8298 for the treatment of secondary progressive MS

Yahoo Finance

Press Release:

BioMS Medical's phase III U.S. multiple sclerosis trial receives positive safety review from Data Safety Monitoring Board
Tuesday April 15, 8:00 am ET

Toronto Stock Exchange Symbol: MS

EDMONTON, April 15 /PRNewswire-FirstCall/ - BioMS Medical Corp. , a leading developer in the treatment of multiple sclerosis (MS), today announced that the independent Data Safety Monitoring Board (DSMB) has reviewed data from the Company's on-going MAESTRO-03 U.S. pivotal phase III clinical trial of MBP8298 for the treatment of secondary progressive MS and recommended that the trial continue.

This was the second of several regularly scheduled reviews by the DSMB that will occur over the duration of the trial. The purpose of the DSMB is to provide objective, independent safety monitoring of the trial.

To date, more than 65% of the total number of required patients have been enrolled in the Company's MAESTRO-03 clinical trial, with full enrollment anticipated for the end of the first half of 2008.

About MAESTRO-03


The MAESTRO-03 U.S. pivotal phase III clinical trial is a randomized, double-blind study enrolling approximately 510 patients at more than 60 clinical sites who will be administered either MBP8298 or placebo intravenously every six months for a period of two years. The primary clinical endpoint for the trial is defined as a statistically and clinically significant increase in the time to progression of the disease as measured by the Expanded Disability Status Scale (EDSS), in patients with HLA-DR2 and/or HLA-DR4 immune response genes (up to 75% of all MS patients are HLA-DR2 and/or HLA-DR4 positive).

About BioMS Medical Corp.

BioMS Medical is a biotechnology company engaged in the development and commercialization of novel therapeutic technologies. BioMS Medical's lead technology, MBP8298, is for the treatment of multiple sclerosis and is being evaluated in two pivotal phase III clinical trials for secondary progressive MS patients, MAESTRO-01 in Canada and Europe and MAESTRO-03 in the United States. It additionally is being evaluated for relapsing remitting MS patients in a Phase II trial in Europe entitled MINDSET-01. In December 2007, BioMS entered into a licensing and development agreement granting Eli Lilly and Company exclusive worldwide rights to MBP8298 in exchange for an $87 million upfront payment, milestone payments and escalating royalties on sales. For further information please visit our website at

This press release may contain forward-looking statements, which reflect the Company's current expectation regarding future events. These forward-looking statements involve risks and uncertainties that may cause actual results, events or developments to be materially different from any future results, events or developments expressed or implied by such forward-looking statements. Such factors include, but are not limited to, changing market conditions, the successful and timely completion of clinical studies, the establishment of corporate alliances, the impact of competitive products and pricing, new product development, uncertainties related to the regulatory approval process and other risks detailed from time to time in the Company's ongoing quarterly and annual reporting. Certain of the assumptions made in preparing forward-looking statements include but are not limited to the following: that MBP8298 will continue to demonstrate a satisfactory safety profile in ongoing and future clinical trials; and that BioMS Medical Corp. will complete the respective clinical trials within the timelines communicated in this release. We undertake no obligation to publicly update or revise any forward-looking statements, whether as a result of new information, future events or otherwise.

Xanthus' Symadex Reverses Disease in Mice

Wednesday, April 16, 2008

Xanthus' Symadex Reverses Disease in Preclinical Mouse Models of Multiple Sclerosis

Wednesday, Apr. 16, 2008

Results Presented at the 60th American Academy of Neurology Annual Meeting -

Xanthus Pharmaceuticals, Inc. presented data demonstrating that Symadex(TM), a selective FLT3 inhibitor, acted to reverse disease in mouse models of both acute and chronic multiple sclerosis. Biomarkers of macrophage and dendritic cells showed a significant correction back towards the baseline levels found in healthy control animals. The results were presented in a poster session by Stephen J. Karlik, Ph.D., Professor of Diagnostic Radiology at the University of Western Ontario, London, Ontario, together with researchers from Xanthus at the 60th American Academy of Neurology Meeting in Chicago, IL.

Using the experimental autoimmune encephalomyelitis (EAE) model, the effect of Symadex was evaluated during both the acute and chronic phases of EAE in the mouse models. A partial, concentration-dependant decrease in clinical signs was observed in the acute prevention experiment, and chronic treatment resulted in a dose-dependent reduction of clinical scores. Plasma titers in a combined treatment group versus disease controls showed significant changes with a trend towards restoring baseline levels of biomarkers found in naive controls. Symadex has previously shown therapeutic benefit in both the acute and chronic stages of the guinea pig EAE model as well as a similar effect on innate cell biomarkers.

"This study adds to the growing body of work supporting the ability of Symadex to potentially prevent and reverse chronic disease in animal models of multiple sclerosis," said Dr. Karlik. "The evidence that Symadex targets innate immune cell function in the treatment of MS is encouraging and is a foundation for the Company's continued work on Symadex in autoimmune models."

About Symadex(TM)

Symadex (formerly C-1311) is the lead compound in clinical development from a new series of agents, the imidazoacridinones, which have shown in vitro to be potent and selective FLT3 receptor tyrosine kinase inhibitors. Xanthus is exploring the use of Symadex and follow-on compounds for the treatment of a number of autoimmune diseases, such as multiple sclerosis and inflammatory bowel disease. Early preclinical data has shown encouraging signs of activity in models of autoimmune disease. Given the compound's safety profile and oral availability, Xanthus believes Symadex represents an exciting drug opportunity.

About Xanthus Pharmaceuticals, Inc.

Xanthus Pharmaceuticals, Inc. is developing a portfolio of novel, clinical-stage, small-molecule therapeutic candidates through a management team whose accomplished track record encompasses all aspects of drug development, from discovery through regulatory approval and commercialization. The Company is applying its expertise to advance its current pipeline to address significant unmet medical need in oncology and autoimmune diseases.

Xanthus is headquartered in Cambridge, Massachusetts with an additional facility in Montreal, Quebec. More information is available at .

This press release contains forward-looking statements concerning Xanthus that involve a number of risks and uncertainties. For this purpose, any statements contained herein that are not statements of historical fact may be deemed to be forward-looking statements. Without limiting the foregoing, the words, "believes," "anticipates," "plans," "expects," "estimates," "intends," "should," "could," "will," "may," and similar expressions are intended to identify forward-looking statements. There are a number of important factors that could cause Xanthus' actual results to differ materially from those indicated by such forward-looking statements, including risks as to whether results obtained in early clinical studies or in preclinical studies such as the studies referred to above will be indicative of results obtained in future clinical trials or warrant additional trials; whether products based on Xanthus' technology will advance through the clinical trial process and receive approval from the United States Food and Drug Administration or equivalent foreign regulatory agencies; whether the company will have the cash resources to develop and commercialize its products; and whether the patent and patent applications owned or licensed by Xanthus will protect the Company's technology and prevent others from infringing it. Xanthus disclaims any intention or obligation to update any forward-looking statements.

Oral Drug Showing MS Benefits

Tuesday, April 15, 2008

First oral drug could benefit many with the autoimmune disease, -Multiple Sclerosis

Info provided by Eddie Abboud in Miami

Pill Reduces Relapses in MS Patients

First oral drug could benefit many with the autoimmune disease, researchers say

By Steven Reinberg, HealthDay Reporter
First oral drug could benefit many with the autoimmune disease, researchers say.

TUESDAY, April 15 (HealthDay News) -- The first pill designed to reduce the number of attacks in people with multiple sclerosis appears to be effective in early tests, Italian researchers report.

The pill was effective in preventing relapses in more than 60 percent of patients who took the pill for three years, according to research that was expected to be presented April 15 the American Academy of Neurology annual meeting, in Chicago.

"All of the current treatments for MS must be injected, so having a pill you can swallow with a glass of water would be a welcome improvement for many people," lead researcher Dr. Giancarlo Comi, from Vita-Salute San Raffaele University in Milan, said in a prepared statement.

In the study, Comi's team treated 281 people with relapsing MS with FTY720 (fingolimod) or a placebo. After six months, two-thirds of the patients who received FTY720 had more than 50 percent fewer relapses, compared with those receiving placebo.

During the three years of the trial, more than 67 percent of the 173 people receiving FTY720 were free of relapses. In addition, 89 percent of the patients were free of disease activity and 75 percent did not develop new lesions or see their lesions enlarge. This was confirmed by MRI scans, the researchers stated.

"The first-line treatments for MS, beta interferon and glatiramer acetate, reduce the relapse rate by only about 30 percent, so this is a significant development for people with MS," Comi said in a statement.

The most commonly reported side effects of FTY720 were headache, flu and cold symptoms.

The drug works by binding to receptors on immune cells, isolating them in the lymph nodes, thereby reducing their ability to cause the damage associated with MS symptoms.

The study was paid for by Novartis Pharma AG, maker of FTY720.

One expert thinks this preliminary data is encouraging, but a lot more needs to be done to prove the drug's effectiveness.

"This is a new drug that has a very strong scientific rationale why it could work," said Dr. John Richert, executive vice president of the National Multiple Sclerosis Society. "Certainly, everything we've seen so far continues to keep us optimistic."

Richert noted that over three years, 77 patients receiving the drug dropped out of the study. "You're left wondering if a more severe adverse event led to the dropouts," he said.

The six-month data where the drug was tested against placebo looks promising, Richert said. "If this turns out to be a safe oral drug that has substantial benefit, that will be very important for many people with MS," he added.


Tysabri - Melanoma & Liver Risk

FDA Warns of Tysabri Liver Risk

Tysabri Linked to Possible Liver Damage; Drug Treats Multiple Sclerois and Crohn's Disease
By Miranda Hitti
WebMD Medical News
Reviewed by Louise Chang, MD

Feb. 27, 2008 -- The FDA today announced that Tysabri, a drug used to treat multiple sclerosis and Crohn's disease, has a new warning about possible risk of liver injury.

Doctors should tell patients about the risk and stop Tysabri in patients with jaundice or other signs (such as lab tests) of significant liver injury, according to a letter sent to doctors by Tysabri's marketers, the drug companies Biogen Idec and Elan.

Tysabri's new warning notes postmarketing reports of patients taking Tysabri who developed liver injury, including markedly elevated blood levels of liver enzymes and high levels of bilirubin. Bilirubin is made when red blood cells break down. Too much bilirubin can cause jaundice.

Some of those patients experienced liver injury as early as six days after starting Tysabri. Others developed liver injury later, after getting multiple doses of Tysabri, which is a biologic drug given by health care professionals at infusion centers.


Latest Headlines from

ECTRIMS 2007 New Things for MS

CME Evaluating New Data for the Treatment of MS
This summary presents an overview of exciting new data on new and emerging pharmacologic treatments for multiple sclerosis presented at the 2007 ECTRIMS meeting.
Medscape Neurology & Neurosurgery 2007
CME The Impact and Burden of Multiple Sclerosis
ECTRIMS '07: Learn how pharmacologic and nonpharmacologic interventions for multiple sclerosis are attempting to reduce its impact on patient function and quality of life.
Medscape Neurology & Neurosurgery 2007

CME Understanding Neural Repair and Neuroprotection
ECTRIMS '07: Expert MS neurologist Dr. Khan discusses new findings from the conference concerning degeneration and regeneration as well as a variety of assessment tools.
Medscape Neurology & Neurosurgery 2007

CME Data Presented at ECTRIMS 2007 to Assist in Effective Diagnosis and Management of Patients With MS
ECTRIMS '07: Dr. Zwibel discusses current thoughts about the different types of MS. In addition to having an accurate definition of the various types, it is important to know about the new assessment modalities that can assist in its diagnosis.
Medscape Neurology & Neurosurgery 2007

CME Current Research on Existing and Emerging Therapies for the Treatment of MS
ECTRIMS '07: New findings concerning the efficacy and safety of medications used to treat MS were presented. Dr. Singer summarizes the new research on various drugs with multiple treatment targets.
Medscape Neurology & Neurosurgery 2007

New Findings Presented at ECTRIMS: The Safety and Efficacy of Novel Immune-Based Therapies for the Treatment of MS -- An Expert Interview With Mark S. Freedman, MD
Learn about new findings presented at ECTRIMS '07 about the safety and efficacy of novel immune-based therapies for the treatment of multiple sclerosis.
Medscape Neurology & Neurosurgery 2007

CME Exploring the Pathogenesis of MS and the Rationale for Current Treatments
The development of targeted therapies for multiple sclerosis needs to be based on an understanding of the pathogenesis of the disease. New data presented at the 2007 ECTRIMS conference provide further insight into the pathogenesis of MS.
Medscape Neurology & Neurosurgery 2007

Tysabri Update

The Tysabri "Rebound Effect"
What is the Tysabri "rebound effect"? Put simply, it means that in one study, people who stopped Tysabri for a long period had more lesions than they did before they started Tysabri. A Dutch study examined the MRI scans of patients taken before starting Tysabri and MRIs taken 15 months after stopping therapy in 21 patients and found that the median number of T2 lesions per patient increased from 3.43 at baseline to 10.32 post-treatment.   Multiple Sclerosis
In the Spotlight | More Topics |
  from Julie Stachowiak, Ph.D.

Read the full article: Is the Tysabri "Rebound Effect" Real?


          More Topics
Is Tysabri Right for You?
In this article, I tried to answer some practical questions about Tysabri, meaning the things that I would want to know if I was considering this treatment. The intent is not to answer all of your questions, but rather to bring up some points that you may want to think about and discuss with your doctor before half-way through your first Tysabri infusion.

Read the full article: Is Tysabri Right for You?


PML, or progressive multifocal leukoencephalopathy, is a rare condition caused by the JC virus. It has been associated with the use of Tysabri. Read more

Tips, Vibrating Eye, Inner Peace!   Multiple Sclerosis
In the Spotlight | More Topics |
  from Julie Stachowiak, Ph.D.

More Topics

 Diagnosing MS
 Weird Vibrating Eye

Today's Top Story: Managing MS: What's Working for You?
Whether you're living with MS or just curious about symptoms and treatments, take a look at WebMD's MS Healthcheck. You may just learn something new today.
Also See: A Common Supplement for MS?
The Dalai Lama -- Source for Inner Peace?

Provigil Warning

Julie Stachowiak, Ph.D.'s Multiple Sclerosis Blog

From Julie Stachowiak, Ph.D.,
Your Guide to Multiple Sclerosis.
FREE Newsletter. Sign Up Now! Health's Disease and Condition content is reviewed by Kate Grossman, M.D.

Provigil Warning!!!

For all of you that have been prescribed Provigil (modafinil) for MS-related fatigue: the FDA has issued a warning that Provigil has been linked to serious skin rashes and psychiatric symptoms.

Instead of me trying to restate these warnings, I give you this, straight from the FDA letter:

  • Skin rashes: "Rare cases of serious or life-threatening rash, including SJS (Stevens-Johnson Syndrome), Toxic Epidermal Necrolysis (TEN), and Drug Rash with Eosinophilia and Systemic Symptoms (DRESS) have been reported in adults and children in worldwide post-marketing experience. The reporting rate of TEN and SJS associated with modafinil use, which is generally accepted to be an underestimate due to underreporting, exceeds the background incidence rate. Estimates of the background incidence rate for these serious skin reactions in the general population range between 1 to 2 cases per million-person years."
  • "Psychiatric adverse experiences (including anxiety, mania, hallucinations, and suicidalideation) have been reported in patients treated with modafinil. Caution should be exercised when PROVIGIL is given to patients with a history of psychosis, depression, or mania. If psychiatric symptoms develop in association with PROVIGIL administration, consider discontinuing PROVIGIL."
Bottom line: Contact your doctor if you are on Provigil and concerned (and IMMEDIATELY contact your doctor if you experience ANY sort of unusual rash or mood changes while taking Provigil).
Wednesday October 31, 2007

Eye Scan May Help Spot MS Damage

Finding May Mean Earlier Treatment for Mutliple Sclerosis
By Miranda Hitti
WebMD Medical News
Reviewed by Louise Chang, MD

Oct. 16, 2007 -- A quick eye scan may help doctors check for nerve damage in multiple sclerosis (MS) patients.

That news might mean swifter treatment for MS, note MS experts including Peter Calabresi, MD, of Johns Hopkins School of Medicine

"Treatments for MS cannot reverse the damage but they can arrest it, so the earlier we get someone on medication the quicker we can stop the disease from causing more harm," Calabresi says in a news release.

The eye scan uses optical coherence tomography (OCT), a painless technique that costs less than brain scans using magnetic resonance imaging (MRI).

OCT shows the thickness of retinal nerve fibers. Thinning retinal nerve fibers may show MS nerve damage, according to Calabresi and colleagues.

They studied 40 multiple sclerosis patients and 15 people without multiple sclerosis. Participants got OCT eye scans and MRI brain scans.

Among the MS patients, thinner retinal nerve fibers were linked with brain tissue loss. But that wasn't true in participants without multiple sclerosis.

The study was small, but the results were "strong and encouraging," write Calabresi and colleagues, who write that OCT is a "relatively new" technique.

They call for larger, longer studies to track OCT and MS over time.


October 16, 2007 (Prague, Czech Republic) — Fluoxetine (Prozac) may help reduce the number of new brain lesions in patients with multiple sclerosis (MS), according to a study presented here at the ECTRIMS 2007: 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis.

The study, which was conducted by Jop P. Mostert, MD, and colleagues at the University of Groningen, the Netherlands, shows a trend toward a reduction in new enhancing lesions with fluoxetine treatment in patients with relapsing-remitting or relapsing secondary progressive MS.

Why Fluoxetine?

Fluoxetine, a selective serotonin reuptake inhibitor, was approved by the US Food and Drug Administration in 1987 and is frequently prescribed for the treatment of various psychiatric disorders, including major depression. However, fluoxetine also has a number of immunomodulatory effects, and previous studies have indicated that it might be beneficial for patients with MS, Dr. Mostert said in his presentation.

One of these earlier studies, which was first presented at the 1997 Annual Meeting of the American Association of Neurology, showed that fluoxetine reduced disease activity in experimental autoimmune encephalomyelitis, the animal model of MS, Dr. Mostert noted. "Furthermore, psychiatrists already reported in 1991 reduced MS in patients using fluoxetine," he added.

Previous research has also found that astrocytes in patients with MS lack beta-2 adrenergic receptors, and this leads to decreased cyclic adenosine monophosphate (cAMP) production, which in turn contributes to the initiation of the inflammatory cascade that eventually results in demyelination, Dr. Mostert explained. Because fluoxetine is able to increase the amount of cAMP in the astrocyte, the researchers hypothesized that the drug could help compensate for the loss of beta-2 adrenergic receptors and thus, reduce the amount of inflammation in MS.

Fewer New Lesions

To test their hypothesis, Dr. Mostert's team enrolled 40 patients (age 18 - 65 years) with relapsing-remitting or relapsing secondary progressive MS in a randomized, double-blind, placebo-controlled trial, with a duration of 24 weeks. Half of the patients were given fluoxetine (20 mg/day), whereas the remaining subjects received placebo.

The primary end point was the cumulative number of new gadolinium-enhancing lesions on T1-weighted magnetic resonance imaging (MRI) of the brain performed at weeks 4, 8, 16, and 24. Secondary outcome measures included changes in the Expanded Disability Status Scale (EDSS) and in the Multiple Sclerosis Self-Efficacy Scale (MSSE) from baseline to week 24.

The investigators found that the study drug was generally well tolerated, with only 1 patient dropping out because of adverse effects (nausea) in the treatment group. One patient also dropped out from the placebo group, leaving 19 completers in each group.

Regarding the primary end point, the results show that there was a trend toward a reduction in the number of new enhancing lesions in patients treated with fluoxetine. The mean (SD) cumulative number of new enhancing lesions during the 24 weeks of treatment was 1.84 (2.9) in the fluoxetine-treated patients and 5.16 (8.6) in the control subjects (P = .15).

At week 4, the cumulative number of new enhancing lesions was "quite comparable" in the two 2 groups, pointed out Dr. Mostert. He emphasized, however, that in the latter part of the trial, there was a steady increase in new lesions in the placebo group, while the number of lesions in the fluoxetine-treated patients remained relatively stable. Restricting the analysis to the last 16 weeks showed a "nearly significant" reduction in the cumulative number of new enhancing lesions and a higher number of patients without new enhancing lesions (63% vs 26%; P = .02).

Commenting on the study, session cochair Roland Liblau, MD, PhD, from Toulouse University Hospital in France, noted that the researchers used "a very interesting approach," because fluoxetine has a very good safety profile.

"It has been used in hundreds of thousands of patients, so we know it's safe," he told Medscape Neurology and Neurosurgery. "The possibility that it has even a slight effect in multiple sclerosis would be very interesting," he added. "The data showed a trend toward efficacy in MS, and I would strongly encourage further trials involving more patients."

This study was an investigator-initiated trial, with no pharmaceutical industry funding.

NMSS Advocacy

Updates on Medicare "In the Home" Restriction and Defense Appropriation

More Info


Renewed Attention to Medicare "In the Home" Restriction

Some people who live with MS and use a mobility device are confined to their homes due to a certain Medicare restriction on reimbursement.  Medicare Part B still will only provide reimbursement for power wheelchairs or scooters that are used inside the home.  For those who need a mobility device to get around in the community outside, reimbursement is denied.

Eliminating the "in the home" restriction is imperative to providing necessary and deserved mobility to people living with MS and other disabilities.  Click here and enter your ZIP code to send a quick email to your Senators.  Ask them to help lift the "in the home" restriction by co-sponsoring this legislation.

This is the same issue that MS activists have been pursuing for awhile.  Senators Jeff Bingaman (NM) and Susan Collins (ME) have renewed interest in this issue by reintroducing the Medicare Independent Living Act (S. 2103).

Statutory language currently is interpreted by Medicare to restrict coverage of mobility devices to only equipment considered reasonable and necessary inside a beneficiary's home. This legislation seeks to lift that restriction under Medicare Part B. S. 2103 is a companion bill to H.R. 1809, introduced in the House by Congressmen Jim Langevin (RI) and Jim Ramstad (MN) back in March.  The issue has early support.  The Senate bill was reintroduced with five co-sponsors, and the House bill now has 33 bi-partisan co-sponsors.

Different Defense Program Could Fund MS Research

Thanks to your hard work, MS research was listed as a disease eligible for funding in a DoD program called the Peer-Reviewed Medical Research Programs.  This program is not the same line item funding that we have been seeking.  It is a sister program to the Congressionally Directed Medical Research Programs (CMDRP), but this inclusion shows great progress in our efforts to expand MS research funding.  Being included on this list, however, does not guarantee funding.  Rather MS funding will be based on the quality of grant proposals submitted.

The Senate Appropriations Subcommittee on Defense passed their FY 2008 defense spending bill out of committee on September 12, which includes this listing.  As expected, the full Senate passed the bill on Wednesday, October 3. 

The House version of the bill, H.R. 3222, passed the full House on August 5.  While MS research was not included in the House defense spending bill, Congressman John Murtha (PA), chairman of the House Appropriations Subcommittee on Defense, promised to fight to include at least $10 million in MS research funding in the CDMRP.  This will be determined when the House and Senate bring their versions of the bill together in a conference to agree on one final bill.  It is anticipated that the conference will take place in mid-October.

Our House champion, Congressman Russ Carnahan (MO) spearheaded a letter to Congressman Murtha thanking him for his commitment to MS research and reminding him of his promise.  Thanks to your help, 29 bi-partisan Representatives signed this letter.  Visit the MS Blog to view the complete list.

We will continue to seek our original request of $15 million for MS research through the CDMRP.  Stay tuned for ways you can help in this effort during the next few weeks.  Click here for more background on MS research funding under the CDMRP at DoD.

Government Programs Still Running, Despite Funding Stall

Many MS issues are tied to government funding, including MS research at the National Institutes of Health (NIH) and state respite care grants that passed last year.  But the federal government's fiscal year ended on September 30, and Congress has yet to pass any discretionary appropriations bills.  The Senate and the House passed a continuing resolution last week to keep the federal government running through November 16.

Senate leaders reportedly plan to bring the FY 2008 Labor-HHS-Education appropriations bill (which funds NIH and respite care) to the Senate floor during the week of October 15.  For NIH, the Senate Committee bill would provide $29.9 billion — about $250 million above the House-approved level and $1.2 billion more than the President's FY08 request.

President Bush continues to hold strong that he will veto any appropriations bill that is over the amount he requested last February — a total of $933 billion.  MS activists will continue to fight for increased funding for the NIH and other programs that benefit people living with MS.

Landmark Drug Safety Bill Signed Into Law

For MS therapies, it is important to balance safety and accessibility.  On September 27, President Bush signed into law The Food and Drug Administration Amendments Act of 2007 (H.R. 3580).  This bill helps move us closer to that balance.  It reauthorizes a number of programs at the FDA, including the Prescription Drug User Fee Act and the Medical Device User Fee and Modernization Act, and it expands current authority related to post-marketing surveillance of drugs.

The Society worked with other patient groups, including the Alliance for Drug Safety and Access (ADSA) coalition on this issue.  We are working to ensure access to new therapies and increase authority and resources for the FDA to protect patient safety post-approval.  Together, we helped shape many of the provisions included in the final bill.

The new law requires drug companies to release all the results of a drug's clinical trials to the public to demonstrate its performance during testing stages.  It also creates the Regan-Udall Foundation, which will work on drug development and safety projects with industry, academics, and patient groups to speed up drug development and innovation.  The Society is currently pursuing opportunities for close involvement as this new Foundation evolves.

We will continue to work with the FDA as they implement this new law and its provisions.  To learn more, click here:

Thank you for being an MS activist. Join the movement at  




Multiple Sclerosis Vaccine Alters Natural Course of Multiple Sclerosis
A newly developed DNA vaccine appeared to fundamentally alter the disease course of multiple sclerosis in patients with relapsing remitting multiple sclerosis. (American Neurological Association 132nd Annual Meeting; 23rd Congress of the European Committee for the Treatment and Research in Multiple Sclerosis.)
Medscape Medical News 2007

Monoclonal Antibody Induces Remyelination in Animal Model of Multiple Sclerosis
Medscape Medical News 2007

Smoking Does Not Affect Progression in MS
Medscape Medical News 2007

HealthTalk - Oral Treatment for MS, Stem Cells and MS, Treatment Overhaul,Tysabri Rebound, Pushing Treatments Through

Oral Treatment for MS If you or someone you love has MS, you're probably counting the days until an oral treatment replaces injections. This dream may soon be a reality. According to Dr. Ellen Lathi, who writes for our Ask the Doctor column, trials are underway for oral cladribine, an immunosuppressive medication, to see how effective it is and whether it can safely be used as a method of treatment. Previous studies using cladribine intravenously in patients with MS have shown a decrease in relapses and new lesions on the brain, results which researchers now hope to achieve in pill form. To learn more about this treatment, or to ask a question of your own, read on.

Stem Cells and MS
Looking for a better treatment option? Tune in October 25 to find out how stem cell transplants have been proven to treat MS, where they’re still falling short, and why political debate threatens this research.
Register now

Overhaul Your Treatment Plan
Stakes are high for those living with MS. Experts explain how to be sure you’re using all the protection available against a life with disability.
Listen to the replay

Reduce Your Stroke Risk
Strokes can severely change the way you live your life. Tune in to HealthTalk Live! on Wednesday to learn about the risk factors and how to avoid them.
Visit HealthTalk Live!

Tysabri Rebound
Trevis is concerned about reports that patients who discontinued Tysabri (natalizumab) were found to have more lesions on MRI, but a blog reader points out another study with contradicting results. What do you make of this controversial data?
Read the blog

Pushing Treatments Through
MS patients are in desperate need of more drug choices, but the FDA approval process is grueling. Trevis talks about an organization that is working to speed up the process and get MS drugs to market more quickly.
Read the blog

Helping Hands
Trevis isn’t shy about asking friends and family for help when he needs it. How comfortable are you asking for help when MS makes everyday tasks difficult?
Read the blog


Treating MS-Related Depression /?htv=95FBBD62-3048-857F-8C612EA168DA6061?autostart=trueDepression affects about two-thirds of people living with MS, according to Dr. Zimney in our Ask Dr. Z video. For some, depression is a symptom of MS, which may improve with disease-modifying drugs. Others are depressed because they are living with a chronic debilitating disease, and they are best treated with anti-depressants. To learn more about managing MS-related depression, watch the video. /?htv=95FBBD62-3048-857F-8C612EA168DA6061?autostart=true

Stopping Treatment
If my MS has been inactive for a long time, is it okay to stop treatment?
Read the doctor's answer

Overhaul Your Treatment Plan
Stakes are high for those living with MS. Tune in on September 27 as experts explain how to be sure you’re using all the protection available against a life with disability.
Register now

The Healing Touch
You’ve heard of massage, but what about rolfing or reflexology? Tune in to HealthTalk Live! on Wednesday to find out about these touch therapies that heal and lower stress.
Visit HealthTalk Live!

New MS Drug
A new MS treatment may be on the way. Trevis shares his findings about a surprising combination therapy that is currently being researched for both relapsing-remitting and secondary-progressive MS.
Read the blog

Accessibility in Our World
Our society doesn’t often cater to people with disabilities. Trevis wants your opinion: How accessible is your community?
Read the blog

MS and Divorce
MS can take a toll on even the strongest relationships. Trevis talks about the divorce rates among people with MS, and his own divorce. Has MS had an effect on your relationship?
Read the blog

Use of Stem Cells for Treatment of Multiple Sclerosis from Julie Stachowiak, Ph.D.

More Topics
  • Is Avonex Right for You?
  • Is Betaseron Right for You?
  • Is Rebif Right for You?
  • Solu-Medrol and Anxiety
  • Prep Your Veins for an Infusion
  • The Solu-Medrol Experience
  • Symptoms of MS
  • Is Copaxone Right for You?

    Time for the Flu Shot
    I used to dread the flu shot (influenza vaccine), and would start gathering my excuses and missing opportunities to get the injection - all because I was afraid of needles. Then I got the flu one year, and felt so terrible for so long, that I decided that once a year (but no more) I could tolerate a needle for the sake of prevention. (Are any of you laughing yet?) ThenI was diagnosed with MS, and now give myself a daily injection. Know what? I still don't love getting a flu shot.

    Having said this, I am the first person in line to get mine. I really believe that it is a very important thing for people with MS to do in order to stay well. The flu can knock anyone for a loop, but for those of us with MS, it can cause a relapse or seriously worsen symptoms. It hardly seems fair to suffer through the heat and humidity of the summer, just to face the threat of all sorts of viral invaders that appear in the fall and winter - the flu shot gives us some protection from one of the "baddies."

    I've pulled together the recommendations of the Multiple Sclerosis Council for Clinical Practice Guidelines about getting the flu shot if you have MS, incorporating new developments, like Tysabri and FluMist. I've made an effort to really answer any questions you may have, including: Can I get the flu shot if I am on Avonex? What if I never get the flu and just don't want it? What if I get regular doses of Solu-Medrol?

    Here's the bottom line:

    • If you have MS, get the flu shot (NOT FluMist, the nasal vaccine), especially if you have limited mobility.
    • Don't get the flu shot (or any vaccine) if you are taking Tysabri.
    • If you are having a relapse, delay the flu shot.
    • Oh, yeah - and if you don't have MS, but live with or care for someone who does, please get the flu shot.

Genetic Link to MS

In the Spotlight

Genetic Links to MS Found
It keeps being reported that "scientists have found two genes for MS." What does this mean? I'll try to shed some light on this. The first statement is confusing, as it implies these genes "cause" MS, in the same way that certain genes directly cause birth defects or other problems. Instead, the "MS genes" work to increase susceptibility to MS, meaning that other factors are still at work. This just means certain people with these genes are 20 to 30 percent more likely to have MS. Put it this way: If the overall risk of MS in the US is 1 in 1000, and you have these genes, your risk becomes 1 in 770. Read more about Risk Factors for MS

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Causes of MS
Why is it important that scientists have found these "MS genes?" One reason is that by further understanding the MS disease process, it gives us new ideas for treatment. These newly-discovered genes cause a defect in certain proteins that regulate immune system activity. If we could "fix" these proteins or counteract their actions, we might be able to stop the T cells from attacking our central nervous system. Only certain people with these genes develop MS (about 1 in 770), as we said above. It still seems to require other factors to "activate" these genes. Click on the title above to read about Causes of MS.

Congressional Caucus on Multiple Sclerosis Formed
A new Congressional Multiple Sclerosis Caucus has been formed in the U.S. House of Representatives. Congressman Russ Carnahan (D-MO) and Congressman Michael Burgess (R-TX) will act as co-chairs of the new MS Caucus. In this case, a caucus is an informal grouping of Members of Congress who are organized to focus attention on, advocate action on, or represent mutual interests or policy proposals around a certain topic, in this case, MS... read more