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Friday, November 13, 2009

Tysabri News - Update

Source: Rocky Mountain MS Center

With the recent announcement confirming the increased number of PML cases, other information has become available as well. Of the 24 cases, two-thirds have been in Europe and one-third in the U.S. This is surprising considering that about 60% of exposed patients have been in the U.S. and only 40% in Europe. Why there appears to be a higher risk of PML in European MS patients on Tysabri is unclear. Additionally, the bulk of the cases have occurred in year three of Tysabri treatment. Specifically, in year one the risk is less than 1/30,000; in year two, it is approximately 1/3,000; and in year three the risk increases to approximately 1/800. The risk is real: in addition to the four reported deaths due to PML, mild to severe disability has been reported in those who have survived their bouts with the brain infection.

The above data suggest that the longer patients are treated with Tysabri, the higher the risk of PML. Does that mean that in year four and year five the risk increases? Few patients have reached four and five years of treatment, so we do not yet know the answer. As to the skewing between the number of cases in the U.S. and Europe, European patients may be more likely to have been treated with chemotherapy before beginning Tysabri. Does that mean that chemotherapy treatment increases the risk of PML, as some MS-specialists speculate? That remains unclear, but we do know that most Tysabri patients who develop PML have no history of other immunosuppressant therapies, which makes that hypothesis unlikely.

Despite the risks, Tysabri has proven itself to be a very effective and tolerable MS treatment, with an average efficacy rate of 70% compared to 30% for the first-line agents (Avonex, Betaseron, Copaxone and Rebif). Aside from the concern regarding PML, the therapy’s safety profile is well-developed and positive. According to Dr. Vollmer, were it not for PML, Tysabri would most certainly be a first-line agent for most MS patients. Therefore, one must wonder: what is the future of this effective, yet worrisome, therapy?

Three main possibilities exist, among them that the FDA and the manufacturers may opt to change the label so that Tysabri would be recommended for only 2 years of treatment or less; that research may advance to the point of identifying patients who innately have a higher risk of PML, although to date very few advances have been made in this area; or that Tysabri doses may be changed and/or the therapy used in combination with other treatment agents.

To read more, click here


Multiple Sclerosis (MS) Story with a Happy Ending(not the naughty kind)

I it's important that the newly diagnosed understand it is possible to lead a full life it's just different than before. I'm not trying to make it sound easy but there is a lot of support out there now.

My personal project is a T-shirt sale highlighting artists that have MS. Please go to MS T-Shirts buy a shirt,help an artist,find a cure. Or Stop by Art to Shirt


Mayo Clinic Neurologist Reports: "Thousands Of NMO Patients Are Misdiagnosed With Multiple Sclerosis"

Article Date: 13 Nov 2009

Thousands of Neuromyelitis Optica (NMO) patients are potentially being misdiagnosed with Multiple Sclerosis (MS), according to Mayo Clinic Neurologist Sean Pittock, M.D., largely due to lack of awareness of NMO within the medical community. Dr. Pittock shared this finding with more than 50 of the world's leading doctors and medical researchers - from Harvard to Oxford - who gathered at the 2009 NMO Roundtable Conference, sponsored by the Guthy-Jackson Charitable Foundation.

NMO is a rare and debilitating disease that attacks the optic nerves and spinal cord, often causing vision loss, paralysis of legs and arms, and sensory disturbances. The Guthy-Jackson Charitable Foundation has brought together these researchers to help find a cure for this rare disease.


Biogen Idec's Social Media Ties Save Tysabri Again; FDA Watching

By David Phillips | Nov 12, 2009

On November 2, Biogen Idec updated the prescribing label for its blockbuster multiple sclerosis drug Tysabri(natalizumab) after consultation with the FDA. Aside from acknowledging that the risk of developing progressive multifocal leukoencephalopathy (PML), an often fatal brain infection, increases with longer duration of treatment, no other revisions concerning the risk of PML were required. The fact that this biologic remains a cornerstone treatment for adult patients with relapsing forms of MS — only the second drug to ever return to U.S. pharmacy shelves after having been withdrawn — speaks volumes to the growing influence of the Web.

The Internet has radically changed pharmaceutical marketing and sales. No longer do drug companies need legions of attractive and personable salespeople to “detail” physicians on the efficacy and patient benefits of their choice drugs.


Posted by: Stuart Schlossman of MS Views and News
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Thursday, November 12, 2009

MS LifeLines (R) - wants you to Eat Healthy this Holiday Season

Thanksgiving is almost here; it's a time to pause and reflect on good times and positive experiences. But it can also be a stressful time, leaving you feeling overscheduled, overwhelmed and tempted to overindulge. We've got some ideas that may help, starting with some tips to help you eat healthy during the holidays.
What's Considered a Healthy Diet?
A healthy diet is one that is low in fat and includes plenty of grains, fruit and vegetables, as well as some high protein foods like meat or dairy. When possible, it's helpful to balance a healthy diet with physical activity. While there is no special diet for MS, try to maintain a balanced diet and avoid fad diets which typically give results that do not last over time.
Be sure to talk to your doctor before starting any nutrition or exercise program.
Don't Give in to Temptation
Eating nutritiously during the holidays can be extra challenging. The following tips may help.
Understand your portions
Portion sizes have dramatically increased over the years, so it's helpful to understand what a healthy portion looks like. It may help to make mental comparisons for certain foods—for instance, a healthy portion of lean meat should be roughly the same size as a deck of cards.
Control your portions
It takes 20 minutes before you start feeling full so try taking smaller portions and eating slower. You may find that by giving your body a chance to register food intake, less food on your plate may actually be enough!
Plan ahead
Eating a healthy snack before going to a party can help curb your appetite and limit indulging in more high-calorie foods.
Don't skip meals
to "make up" for extra calories eaten at parties. It can lead to overeating at other meals and deprives your body of the fuel it requires to function.
Make low-fat substitutes
like fresh fruit or yogurt instead of ice cream; turkey instead of ham for your holiday meal; precut veggies or pretzels instead of high fat hors d'oeuvres.

Get helpful hints on reducing holiday stress


Your friends at MS LifeLines

A Personal MS Chronologue on Stuart and the questions that need resolve

Yes, Stu's Views and MS News is my blog. But how rare it is, that we (I) (the Royal WE) ever print anything concerning myself.

Many of you know, that I too have MS.. Yea that's right, Me. Many have wondered over the years and many just do not want to believe that this lives within me. Yes, I am always trying to do (often too much) and because I seem to push myself too hard, I often have setbacks. Some much worse than others. I am sure that many of you, living with MS, know what I am writing about.

I began using a cane much more often than not, several months ago and after an incident that lead to a wrist injury, I use this cane that much more. But why? What do I mean why? Yes, why am I comfortable with using a cane to go forward with my life. Why have I just accepted to use this, rather than try a medication that may allow me to not have to use this cane? Why has it been very difficult on me the last year thinking clearly and why have I just accepted this, as being MS?

Yes, WHY have I been just accepting everything? I did not do this when I was first diagnosed and the Neuro wanted me to wait until I worsened before beginning one of the ABC meds (there was no CRABS at that time, only A, B or C). Instead I found another Neurologist who told me how important it was that I did not worsen.

Is there something else out there, that I haven't yet tried, that might alleviate some of these problems? The answer is "maybe".

Maybe it's time that I begin a new medication. And so, after wrestling with this decision for the last (10) months, I am ready. This weekend, will begin a period in which I need to cleanse (washout) my body from my current therapy, that I have been using since 'it' became available for sale in 2002.

I am sure, that there are those who have already figured out my next step (by what I have written or from what they already know of me) ... I will try this medication for a year and hope that I have less problems from my Multiple Sclerosis and what it has been "Not allowing me to do".

My new therapy will begin just in time for the holiday season. This is the Gift, I am giving myself.

Your comments would be appreciated, whether leaving them on this blog page, or on the facebook page where this article ( like all others posted to my blog) are technologically fed.

My question should be: Why just accept, when there are options...


Stuart Schlossman
written: November 12, 2009


Wednesday, November 11, 2009

New Tools for Sharing and Advancing Medical Knowledge

SAN FRANCISCO, CA (November 10, 2009) – The Medpedia Project today announced the addition of three new services on the beta version of the technology platform for the worldwide health community: Medpedia Answers for asking and answering medical and health questions; Medpedia Alerts for displaying real-time medical and health news alerts; and Medpedia News & Analysis for sharing medical news and analysis. These free resources are available today at

Medpedia Answers collects questions and answers about health, medicine and the body. Each question is tagged with both MeSH and plain-English headings for better discovery. Each question is also pushed into relevant areas throughout the Medpedia Project such as patient communities and article pages. Questions and answers are for general information purposes only, not as a substitute for in-person evaluation or specific professional advice. Anyone with a profile on Medpedia can participate. The Medpedia Answers Top Contributors list gives recognition to the most active contributors.

Medpedia Alerts is a platform for aggregating and distributing health and medical news alerts. Organizations with real time alerts simply plug their feed into the platform -- joining other feeds such as the CDC, the Red Cross and the American Heart Association – to attract more readers who can subscribe to custom aggregated alerts feeds for free. In addition, any member of the Medpedia community can submit an alert in the Medpedia Alert Stream, or submit a website or Twitter account to be integrated into the platform on an ongoing basis. Submissions to the Alerts platform are reviewed by the community and if approved, are included in the appropriate Alert categories.

Click here to continue reading from their press release.

>> And then, see how each time I post something to this "Stu's Views & M.S. News" blog, it then technologically feeds to a "Stu's Views & M.S. News" page on the Medpedia site, by clicking here <<


Myelin Repair Foundation Aims for First Phase 1 Clinical Trial in 2014

November 10, 2009 – Saratoga, CA– The Myelin Repair Foundation today released its first five-year report that includes a new set of ambitious goals for the second 5 years of its myelin repair research program.

The Promises Made, Promises Kept report summarizes the MRF’s scientific achievements as well as its advances in demonstrating that its Accelerated Research Collaboration™ model has effectively accelerated the rate of target discovery.

Read their Goals and more, by clicking here


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How Many Days until the Holidays?

Shmoozin' with Susan

By: Susan Dorne, OT

Written: November 11, 2009

Each year I am always amazed how quickly time goes by. Once again I’m asking myself “How Many Days until the Holidays? Didn’t we just finish shopping, having our dinners and going to parties? Well, here we go again!

Now is the time to get started. I thought I’d share some ideas to help conserve energy, simplify things and how to keep a calm mind!


For most people, shopping is preferred in stores. Although this can be challenging for some, there are ways to make it more manageable. Shop during the part of the day when your energy is at its best. The earlier you go, the less people there likely will be. Take into consideration weather, traffic and all that you have to do for that day. Space out what you need to do whether it’s shopping for gift, decorations, food, etc. so you don’t overdo it. You can also call the stores ahead of time to make sure items you want are available.

Continue reading Susan's perspective by clicking here


Magnetic resonance imaging predictors of conversion to multiple sclerosis in the BENEFIT study

Arch Neurol. 2009 Nov;66(11):1345-52.

Moraal B, Pohl C, Uitdehaag BM, Polman CH, Edan G, Freedman MS, Hartung HP, Kappos L, Miller DH, Montalban X, Lanius V, Sandbrink R, Barkhof F.

Department of Diagnostic Radiology, Multiple Sclerosis Center Amsterdam, Vrije University Medical Center, De Boelelaan 1117, 1081 HV Amsterdam, the Netherlands.

BACKGROUND: Several studies have confirmed the predictive value of baseline and follow-up magnetic resonance (MR) imaging variables for conversion to clinically definite multiple sclerosis (CDMS), depending on the population, follow-up duration, and treatment intervention. However, the timing of follow-up imaging and the effect of treatment intervention on the predictive value of baseline MR imaging variables require further elucidation.

OBJECTIVES: To assess the prognostic value of baseline MR imaging variables for conversion to CDMS over 3 years and whether this was affected by treatment intervention and (2) to assess the increased risk for conversion posed by dissemination in time on follow-up MR imaging. DESIGN: Cohort study.

SETTING: Multicenter randomized clinical trial. PATIENTS: Four hundred sixty-eight patients with a clinically isolated syndrome who had an initial clinical demyelinating event within the past 60 days who received early treatment (3 years of interferon beta-1b) or delayed treatment (placebo first, followed by > or =1 year of interferon beta-1b). Intervention Magnetic resonance imaging. Main Outcome Measure Time to CDMS.

RESULTS: The overall conversion rate to CDMS was 42%. Barkhof criteria with the strongest prognostic value were the presence at baseline of at least 9 T2-weighted lesions (hazard ratio [HR], 1.64; 95% confidence interval [CI], 1.15-2.33; P = .006) and at least 3 periventricular lesions (1.66; 1.14-2.41; P = .009). No specific advantage was noted in using a fixed cutoff of at least 3 Barkhof criteria (HR, 1.31; 95% CI, 0.95-1.79; P = .10). The prognostic value of all MR imaging criteria was unaffected by treatment intervention (P > or = .20 for all). Dissemination in time resulted in increased risk for CDMS only in patients without dissemination in space at baseline and was most informative at the 9-month MR imaging (HR, 2.72; 95% CI, 1.26-5.87; P = .01).

CONCLUSIONS: The modified Barkhof criteria showed moderate predictive value for conversion to CDMS, although all patients had received interferon beta-1b therapy for at least 1 year. The predictive value was unaffected by treatment intervention. Follow-up MR imaging was most informative after 9 months in patients without dissemination in space at baseline.

PMID: 19901165 [PubMed - in process]


Barrier-free living environment for persons with disabilities -

The information found below might benefit those living with a disability in the State of Florida. I only write Florida, because this is where this company exists. I would think that for those living outside of Florida, that similar services might be available.

Housing and Assistive Technology, Inc. (HAT) provides design solutions for independent living. Home modifications are essential to provide a barrier-free living environment for persons with disabilities (of all ages and disabilities) and senior citizens.

This site features examples of accessible bathrooms, kitchens, entrances, plus assistive technology solutions for independent living. Feel free to contact us for more information on how we can assist you. Funding sources are available for eligible and qualified home owners.

Click here for more information.


Do cannabinoids reduce multiple sclerosis-related spasticity?

Source: - Neurologist. 2009 Nov;15(6):369-71.

Thaera GM, Wellik KE, Carter JL, Demaerschalk BM, Wingerchuk DM.

Departments of Neurology, and daggerLibrary Services, Mayo Clinic, Scottsdale, AZ 85259, USA.

BACKGROUND: The plant Cannabis sativa contains numerous cannabinoids, which are aromatic hydrocarbons that have central nervous system effects mediated through specific cannabinoid receptors. Some patients with multiple sclerosis (MS) report symptomatic relief from spasticity, pain, and other symptoms when using smoked cannabis, and small trials have suggested some symptomatic benefit.

OBJECTIVE: Do cannabinoids improve spasticity in patients with MS?

METHODS: We addressed the question through the development of a structured, critically appraised topic. Participants included consultant and resident neurologists, clinical epidemiologists, medical librarian, and clinical content experts in the field of MS. Participants started with a clinical scenario and a structured question, devised search strategies, located and compiled the best evidence, performed a critical appraisal, synthesized the results, summarized the evidence, provided commentary, and declared bottom-line conclusions.

RESULTS: The largest randomized, placebo-controlled trial of oral cannabinoid therapy detected no improvement for MS-related spasticity as measured by the Ashworth scale. However, subjective participant reports indicated improvement in spasticity (P = 0.01), spasms (P = 0.038), sleep quality (P = 0.025), and pain (P = 0.002) without detriment to depression, fatigue, irritability, or walk time. A second randomized controlled trial, which used subjective participant report as the primary outcome, revealed the same discrepancy between subjective and objective spasticity outcome measures.

CONCLUSION: Randomized controlled trials have failed to confirm objective evidence for a beneficial effect of cannabinoids on MS-related spasticity. However, improvement in subjective assessments of spasticity and other related symptoms have been consistently noted, raising questions about the sensitivity and validity of current objective outcome instruments. Further research is warranted with regards to both outcome instrument development and the effects of cannabinoids on MS-related spasticity.

PMID: 19901724 [PubMed - in process]


A Photo Essay of Multiple Sclerosis

Wednesday November 11, 2009
By Julie Stachowiak, Ph.D., Guide to Multiple Sclerosis

Ms. Lay Dorsey has been living with primary progressive multiple sclerosis since 1988. Like many of us with MS, the disease not only resulted in physical symptoms, but started to do something even more evil - it made her feel less beautiful and ashamed. Instead of covering up her flaws, she fought back by looking at them more closely through a camera lens. Now she is sharing them with the world and guess what? Those "flaws" are no longer flaws, but elements in a composition, beauty in the way that they reveal this person's soul.

By opening up herself like this, Ms. Lay Dorsey gives us the chance to take a good honest look at ourselves, to not only look beyond the MS, but also to look at our MS straight on. By the end of looking at her photo essay, I can say that I felt calm. I thought about my own MS and felt a little less anger and a little more tolerance with my body that is turning on itself.

I hope others, those living without MS, can take a look at this essay and see what it is in themselves that they need to come to peace with, then take a step towards doing just that. I get the feeling that that is the point of the whole project, really, rather than giving "insight" into what it is like to live with this disease.

As Ms. Lay Dorsey herself says, "People will see us as either terribly inspiring or terribly pathetic. We're either super gimps or just tragic. The fact is we're not either one. We're human beings and we're just living life. Doing the best we can. Everyone has challenges of one kind or another. It just so happens that mine are more visible than others'."

Stuart Schlossman would like to thank Julie Stachowiak, for providing this information
Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You

Clearing Up the Confusion - concerning the H1N1 Vaccine and Multiple Sclerosis

Clearing Up the Confusion

By Julie Stachowiak, Ph.D.,

Created: November 10, 2009 Health's Disease and Condition content is reviewed by the Medical Review Board

As many have read, I am strongly advocating that people with MS get the H1N1 and seasonal flu vaccines, as many of us have decreased lung function that makes us susceptible to pneumonia, which is the biggest risk associated with infection from the H1N1 virus.

In response to my last blog post about the H1N1 vaccine for people with MS, I got the following comment: “I am hoping that the person you are responding to does not take one of the current 5 choices of medicines to help control their MS. As I am sure you are aware they work by keeping the immune system busy and therefore not attacking your own body. If they are on one of these treatments, then yes they do have a weakened immune system.”

Well, kind of, but not exactly. I will try to clarify the role of some of the drugs that people with MS might be on and what is means in terms of the H1N1 and seasonal flu vaccines.

NOTE: This article is NOT meant to replace the advice of your primary care physician or neurologist. You should discuss your decision to get a flu shot (or not) with your physician.

Continue to read (from the fifth paragraph) to learn who (using which MS medication) really should, who need to wait and/or who can, get the flu shot.

Stuart suggests that you read the entire article and speak with your primary physician.


Tuesday, November 10, 2009

NEUROLOGÍA - Anticuerpos monoclonales para tratar la esclerosis múltiple, toda una revolución

Esclerosis múltiple

La esclerosis múltiple sigue siendo una de esas enfermedades que no logra controlarse al 100%. Nos encontramos ante una patología cuya causa aún se desconoce, y que presenta unas manifestaciones imprevisibles y diferentes según cada paciente. Sin embargo, en los últimos años se ha logrado obtener un tipo de fármaco que no solo logra que la discapacidad producida por la enfermedad no progrese, sino que consigue mejorar el estado de algunos pacientes. La doctora Montserrat Gonzalez Platas, neuróloga del Hospital Universitario de Canarias, nos amplía la información sobre esta nueva farmacología que ha constituído una auténtica revolución en cuanto a esta enfermedad neurológica.

El tratamiento farmacológico para la esclerosis múltiple que se presenta como novedad se basa en los anticuerpos monoclonales. Un anticuerpo monoclonal es un anticuerpo fabricado a raíz de una molécula, que suele ser una proteína, que actúa como los anticuerpos naturales del individuo que, por culpa de la enfermedad, no funcionan como deberían. Es decir, que la industria reproduce en forma de fármaco la función natural del propio organismo. El descubrimiento de este tipo de anticuerpos ha sido todo un logro porque ha ayudado a comprender mejor la enfemedad, qué mecanismos pueden desencadenarla, al mismo tiempo que ayuda a bloquear los descontroles funcionales que provoca.


Men Leave: Separation And Divorce Far More Common When The Wife Is The Patient

For those that know me and have heard me speak; have often heard me say the same (unfortunate) thing (as what you read below). --Maybe not have said the exact wording, but the same context. - --Stuart Schlossman

ScienceDaily (Nov. 10, 2009) — A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient, according to a study that examined the role gender played in so-called "partner abandonment." The study also found that the longer the marriage the more likely it would remain intact.

The study confirmed earlier research that put the overall divorce or separation rate among cancer patients at 11.6 percent, similar to the population as a whole. However, researchers were surprised by the difference in separation and divorce rates by gender. The rate when the woman was the patient was 20.8 percent compared to 2.9 percent when the man was the patient.

"Female gender was the strongest predictor of separation or divorce in each of the patient groups we studied," said Marc Chamberlain, M.D., a co-corresponding author and director of the neuro-oncology program at the Seattle Cancer Care Alliance (SCCA). Chamberlain is also a professor of neurology and neurosurgery at the University of Washington School of Medicine.

Click here to continue reading from the (4th) paragraph


Monday, November 9, 2009

Is the H1N1 vaccination safe for those with multiple sclerosis?


In your opinion, is the H1N1 vaccination safe for those with multiple sclerosis?

The National MS Society and our clinic recommend influenza vaccinations, as well as other routine vaccinations, for people with multiple sclerosis.

Vaccination does not influence the onset of multiple sclerosis. In a study of 440 people with MS published in 2003, the risk of having MS was not influenced by prior immunizations. There was no increase in MS in those receiving vaccinations anytime in the past, within the past one to five years, or within the past year. Vaccinations for hepatitis B, influenza, tetanus, measles, and rubella were studied.

Similarly, vaccination does not cause attacks in those already diagnosed with MS. In a large European study, vaccination in the past one, two or three months was not associated with an increased risk of MS attacks. This study looked at tetanus, hepatitis B and influenza vaccines. In a smaller study of 104 subjects with MS, those who received influenza vaccination had the same rate of MS attacks in the following six weeks as those receiving placebo. There is no evidence that tetanus, hepatitis B, or influenza vaccines cause MS attacks.

Those who are not vaccinated have an increased risk of getting the flu.

Continue reading by clicking here


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Curb cuts too steep for wheelchair

This is an important topic found in many places around the world...


In the Village of Northport, there are several sidewalk curb cuts in the downtown area that are dangerously steep for someone like me, who must use a wheelchair. They're at such a sharp angle that if I tried to navigate them, my wheelchair would tip backwards and fall over. I've been asking village officials for the past 10-12 years that I have been using a wheelchair, as a result of multiple sclerosis to fix the curb cuts, so that I can remain as independent as possible, but there have been no changes.

- Tamar Sherman, Northport

Granted, there are structural obstacles (like a storm drain and manhole cover) and other obstructions that need to be addressed before the curb cut problem can be fixed, but we can't imagine why the village hasn't moved on this issue sooner. Elected officials have come and gone in the past decade, but the dangerous curb cuts haven't been touched.

Continue to read from