Day 6 at ECTRIMS: Managing cognitive function is an important part of your well-being and personal health while living with MS. Learn more about the important research being done in this area.
Monday, October 31, 2011
Thursday, October 27, 2011
Medicare open enrollment period has begun: Beneficiaries have more benefits, better choices, lower costs
The Center for Medicare & Medicaid Services is encouraging people with Medicare and their families to begin reviewing drug and health plan coverage options for 2012 to take advantage of the increased benefits, improved choices and lower costs that are available. The Medicare Open Enrollment Period – which began earlier this year on Saturday, October 15 – has been expanded to seven weeks and will end on December 7th. This will give people more time to compare and find the best plan to meet their unique needs.
- Medicare’s website, where they can get a personalized comparison of costs and coverage of the plans available in their area. The popular Medicare Plan Finder tool has been enhanced for an efficient review of plan choices. Spanish Open Enrollment information is available.
- The 2012 Medicare & You handbook. It is also accessible at online here, and has been mailed to the homes of people with Medicare.
- The Medicare & You 2012 handbook in Spanish can be found here.
- Counseling assistance from an MS Navigator at 1-800-344-4867.
Tuesday, October 25, 2011
For people affected by MS, finding answers and making decisions means having the right information at the right time. That’s what an MS Navigator provides — answers to your questions and access to information about all of the options available to you.
- What you need to know when newly diagnosed
- Treatment options and symptom management strategies
- Accessing optimal health care
- Meeting workplace challenges
- Understanding benefits such as health insurance
- Facing financial challenges and planning for the future
- Facing caregiver challenges
- Finding help in the home
- Managing life changes
- Locating resources in your community.
- Deal with a crisis
- Connect with others living with MS
- Find what you need to maintain independence
- Access comprehensive educational programs and more.
Call 1-800-344-4867 to speak directly to a navigator. Or pose your questions in the comments field below, and check back in to the Society blog in the days and months to come as we address your questions through our “Ask an MS Navigator” column.
Saturday, October 22, 2011
Every 2 years the Multiple Sclerosis International Federation awards The Charcot Award for Lifetime Achievement in MS Research. This year the award was given to Larry Steinman, Professor of Neurology at Stanford University. He was chosen, in part, for a series of studies looking at molecules involved in disease that led to Tysabri. I was lucky enough to be at ECTRIMS 2011 and see Dr. Steinman accept his award. I have to admit to becoming a little emotional when Dr. Steinman took the podium and said, "Though I'm deeply honored, let's have the real celebration when the disease is something we can see only in the rear view mirror." He is currently working on a DNA vaccine for MS, as well as finding biomarkers to guide therapy, which he discussed in his talk. I will attempt to paraphrase and summarize Dr. Steinman's presentation on biomarkers.
When I wrote that I was coming to ECTRIMS 2011 to report on the most current MS treatment and research on the disease, I got several e-mails and blog comments from people with primary progressive MS (PPMS), who were anxious to hear what treatment was in development for them. My friends, I wish I had better – indeed, any – news to report. At this conference, there was no research presented about developments in treatment of PPMS.Why the huge disparity in research activity around treatment for relapsing-remitting MS (RRMS) and PPMS? Of course, the first thing that comes to mind is that PPMS treatment has much less potential for huge profit than a successful RRMS drug, due to the fact that only 10 to 15% of people with MS have PPMS, with the vast majority having RRMS.
Friday, October 21, 2011
Many people with MS will relate to the statement "MS hits each person where it hurts the most." By this, I mean that we seem to develop symptoms that limit our ability to do what we love the most.
There are many components to a "good" experiment - not just that a researcher gets the results that he or she wants, showing that their hypothesis was valid with statistical significance. A very important part of scientific "success" is that the experiment is reproducible, meaning that a scientist anywhere who followed the protocol exactly should be fairly certain to get the same results (or at least very close).
Everyone has their own journey with multiple sclerosis (MS). One part of life with MS involves treatment.
- 30% of people started an interferon (Rebif, Betaseron, Avonex) an average of over 5 months after diagnosis
- 16% started Copaxone an average of over 6 months of diagnosis
- 4% started something else (Tysabri, mitoxantrone, IVIG) a year and a half after diagnosis
- Nearly 50% of people in the database had not started any disease-modifying therapy four years after treatment
Thursday, October 20, 2011
Many women, myself included, upon finding out that they are pregnant, experience about 90 seconds of pure joy before beginning to inventory every single thing that we ate, drank, inhaled or injected from the moment of conception. We all worry that we may have put something in our bodies that would somehow harm our babies.
During my first relapse, I remember asking my neurologist lots of questions, including what my future held in terms of relapses, based on what he had seen.
- People age 29 and younger had the most relapses, with an annualized relapse rate of 0.49 – this translates into one relapse every two years. The frequency of relapses dropped as people got older, and people older than 60 only had .06 relapses per year. To quantify this number, think of this as 6% chance of having a relapse in a given year or one relapse every 16 years. *
- People tended to have many more relapses early in their disease (or sooner after diagnosis) than those who had the disease for a longer time.
- Women had more relapses than men.
Imagine a world where you could be diagnosed with MS before ever having any first symptoms. Biomarkers are the map of who you are and scientists are identifying important elements to help create a personalized treatment plan for you.
Raise your hand if you've fallen. I bet you didn't have to think long to come up with that answer. Most of us cannot remember what we ate for dinner yesterday without thinking about it a little while, but, boy, those falls are permanently imprinted on our memory and often come to mind at unexpected moments like other embarrassing situations that we have endured.
No time to waste on drugs that aren't working: Determining who is a "non-responder" early in the game
When we start our disease-modifying therapy, it is with the hopes that it is going to stop (or at least drastically reduce) our MS relapses and/or progression of disease. For some of us, a certain therapy works and for others it doesn't.
Wednesday, October 19, 2011
It is true that the term "stem cells" immediately has people thinking about those stem cells that are derived from fetuses or embryos – the topic of much discussion and controversy. However, much exciting work is being done on stem cells that can be taken from adults – either donors or the transplant recipient themselves.
- Bone marrow is harvested from the patient.
- The HSCs are separated out from the other cells in the bone marrow. This is very important, as this also removes the pathogenic T cells that are thought to cause MS.
- The HSC are multiplied in vitro (outside of the body).
- Meanwhile, the patient's immune system is completely destroyed using chemotherapy.
- The HSC are then transplanted back into the patient.
- The HSC works to completely rebuild the immune system. However, the "new" immune system does not contain pathogenic T cells.
- None of the participants experienced relapses and no new lesions were detected.
- Ten patients stabilized, meaning they showed no clinical progression, however they did not regain function.
- Nine patients recovered much of their lost function. These were the ones who had been diagnosed most recently.
- However, 7 patients continued to progress in terms of disability. Researchers think that timing of this kind of stem cell therapy is crucial and that to be effective, treatment cannot wait until there is too much damage.
- A majority of these patients stabilized
- Mortality started around 5 percent, but is now down to 1.3% of people treated this way.
- People less than 40 years old and those who had the disease less than 5 years did best.