Search Results for: "multiple sclerosis"

#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS. When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion. But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor. After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis. I am more than my …

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Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey

We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago. The program focuses on lifestyle changes — things like diet, exercise, and meditation — that can help MS patients feel better and healthier in their day-to-day lives. We wanted to get Casper’s thoughts on what OMS is all about, and whether it’s helped him manage his health. Below, see what he has to say about his journey with MS (and OMS) and his experience on PatientsLikeMe: “It ensures I do not feel alone.”   Tell us a little bit about yourself. What was life like before your diagnosis with MS?  Life was fun, I had lots of friends and was enjoying life, no worries! I mostly enjoyed walking in the countryside, cooking and eating with friends. I live in the UK, and my family are all in Sweden (I am half English, half Swedish). We hear from many PatientsLikeMe members living with MS that finding a diagnosis can sometimes be challenging. What was your MS …

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Myths vs. facts about multiple sclerosis

Stop! What do you know about multiple sclerosis (MS)? That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition. There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round. What’s the community saying? “The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness” -MS forum thread “I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.” -MS forum thread “A society that attaches a …

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March is Multiple Sclerosis Awareness Month

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month. What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1 Did you know that there are four different types of MS? Each one affects people a little differently. Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases. Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women. Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients. Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses …

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“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy and fundraising events with her now legendary team, Kim’s Cronies. She spoke with us about her diagnosis with relapsing remitting MS, the evolution and growth of her fundraising efforts and just how much the MS community on PatientsLikeMe means to her. You were diagnosed with relapsing-remitting MS in 2006 – what was that experience like? My experience with being diagnosed was probably like everyone else. “Shocked.” My symptoms started with visual changes. I had Lasik surgery done 3 years prior and thought that something was going wrong because of that procedure. I went to the eye doctor and he mentioned optic neuritis, and being in the health care profession, I knew that was usually in relation to multiple sclerosis. Already, my mind started racing thinking all about the negative things related to MS. Within a week, I went to see my MD and had an MRI, …

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Stand up and be counted during National Multiple Sclerosis Education and Awareness Month

  Here at PatientsLikeMe, every experience counts, whether you’ve just been diagnosed, are trying a new treatment, or managing your symptoms. This month, we’re standing up and focusing on Multiple Sclerosis (MS), a neurological condition that affects 2,500,000 people around the globe—including more than 400,000 in the United States.1 To help raise awareness about MS, the Multiple Sclerosis Foundation (MSF) and its partners have named March “National MS Education and Awareness Month.” Together, we can stand up and help those living with MS be counted. There are many different awareness activities you can participate in over the next few weeks. You can also submit a photo to the MSF as part of their “MS Awareness: Make It Count” contest. You’ll need three things: A camera (still or video) Lots of people wearing the color orange (here’s a picture of the PatientsLikeMe team) A homemade sign that says “SUPPORT THE MULTIPLE SCLEROSIS FOUNDATION – BECAUSE MS COUNTS!” If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts. And you could also join more than 33,000 people with MS at PatientsLikeMe – it’s one of the largest communities on the site, and there are always some great …

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Getting involved during Multiple Sclerosis Awareness Week

Did you know that every year, the first week of March is dedicated to multiple sclerosis (MS) awareness in the United States? From March 3rd to March 9th, events will be held across the country to educate people about the four different kinds of MS and how the neurological condition impacts peoples’ lives. In the U.S., the average person has about a 1 in 750 chance of developing MS. Worldwide, MS affects over 2.3 million people,1 and there are four different types – relapsing-remitting (RRMS), secondary-progressive, primary-progressive and progressive-relapsing. Each kind of MS varies by symptom and progression, and RRMS is by far the most common – 85% of new MS patients are diagnosed with this type. Learn more about the different kinds of MS. If you are wondering how you can help raise awareness and get involved, you can: Find MS volunteer opportunities in your area Become an MS activist by joining the National MS Society’s MS Activist Network Participate in a walk, bike, challenge walk or MuckFest event Visit the MS community forums on PatientsLikeMe to share your own real-world experiences More than 33,000 MS members are sharing their experiences on PatientsLikeMe, and together, we can advance research …

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“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.

For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of different topics: getting diagnosed, family history, Medicare Part D and his service dog Catti-Brie. Can you tell us a little about your first experiences with MS and finding a diagnosis? My first experience with MS was through my grandfather on my mom’s side of the family. He was diagnosed with MS in 1957 and passed away in 1996 due to complications during hip replacement surgery. After that, we didn’t think or even know there was a genetic element to MS until I was diagnosed 3 years ago. I feel because I had a somewhat classic MS progression and a family history that my diagnosis came relatively easy and quickly. It took only a month of testing to determine MS. It did help that I have a great neurologist who specializes in MS. I think the diagnosis hit my mom and grandmother harder than it did …

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“It’s all about attitude.” An interview with multiple sclerosis patient and PatientsLikeMe member Alys

Have you met Alys yet? Some of you may know her on PatientsLikeMe as browneyedgirl3. Alys was diagnosed with multiple sclerosis (MS) back in 1987 and has been sharing her own personal health journey on PatientsLikeMe since 2009. She recently took some time to talk to us about her diagnosis, staying optimistic and what inspired her to write a book. Can you tell us a little about your experience with MS? What your first symptoms were and when you were diagnosed? I didn’t give MS much thought until I was forced to examine the disease on a personal level. I began having symptoms at age 16. I initially had sensory symptoms like numbness, pain, burning, vertigo and fatigue. The headaches were unpredictable but I would just excuse them as typical teenage stresses. The blurry vision was a bother as well. I was diagnosed November 18, 1987 while working as a registered nurse (RN). I was 21 years old.  I was the charge nurse that night so I was busy and exhausted. Suddenly, I was discovering what many people with MS are dealing with on a daily basis and I didn’t like it! I began to encounter symptoms at an age …

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