CCSVI

What Do You Know About Multiple Sclerosis?

March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves. This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible.  This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled.  It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health. It could also refer to nurturing hobbies and interests.  That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS.  The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska. With 26,000+ members, the MS community at PatientsLikeMe is one of our largest.  Approximately 80% of the MS community is female (reflecting the fact that MS …

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What Does “MS=” for You?

This week marks MS Awareness Week. In celebration of the theme this year (i.e., “MS=”), we are happy to tell the world about what MS equals to us. At PatientsLikeMe, MS= over 22,000 patients sharing their MS journeys with each other and over 90 MS Mentors answering questions about everything from managing symptoms to choosing a doctor. What can you learn about MS at PatientsLikeMe? At PatientsLikeMe, MS patients can report their current and past treatments, including prescription drugs, supplements, over-the-counter medications, lifestyle modifications, procedures and more. They can also report their symptoms and side effects. Here’s a glimpse of what our 22,000+ MS patients have reported: The most widely used prescription drugs are Copaxone, Avonex and Rebif. The top three supplements are Vitamin D, Omega 3 Fish Oil and Multivitamins. Among other types of physical exercise, yoga and stretching are very popular. Symptoms that are most reported include fatigue, pain and stiffness/spasticity. What are our MS members talking about? The current buzz among MS patients concerns an experimental vascular procedure called CCSVI and a new FDA-approved oral medication called Gilenya. Who’s tried them? And have they benefited? Our MSers are hashing it all out in our forums. Another topic is feeling …

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One for All: Ways You Can Share, Find and Learn at PatientsLikeMe

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it? If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition. To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.” PATIENT 1 (MS) SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ” FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.” LEARN: …

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