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The Patient Voice- MS member Jackie shares her story

  When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.     Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.

“There were so many people asking the things that I was too afraid to ask”

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over the last nine years has made a difference in her life, and the course of her illness. A jarring diagnosis “Some may say I was “lucky” that I had little trouble being diagnosed compared to many who spend years chasing answers to understand why they are feeling as they do. It can be frustrating wondering what’s happening to your body.” The summer before her diagnosis, Jackie found herself suddenly unable to walk or move her limbs for nearly two full weeks. After diagnosing her with an unspecified virus, her physician prescribed an antibiotic over the phone. The antibiotic didn’t help. A month later, after experiencing terrible pain in her left eye, Jackie went to an ophthalmologist. He believed she had MS and contacted her physician to request an immediate consult with a Neurologist for a Lumbar Puncture and an MRI. “This all took place within a …

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PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden

Last month, PatientsLikeMe was honored to host a special visitor — Dr. Jill Biden was in town as part of the Cancer Moonshot Initiative announced by President Obama in his 2016 State of the Union Address. She made time to stop by our office to learn more about how PatientsLikeMe works and how members use the site to manage their health and improve outcomes. During her visit, Dr. Biden was greeted by Co-founder Ben Heywood, who introduced her to some of the folks behind the scenes here at PatientsLikeMe. Ben sat in on a roundtable discussion with Dr. Biden and four patients from our community — Phyllis, Jackie, John, and Laura. Here’s what he had to say about what the experience meant to him and PatientsLikeMe… PatientsLikeMe was founded on a simple idea: when patients connect to share their experiences, they can learn from each other how to better manage and treat their disease, and improve their outcomes. We’ve been honing the way we help our members do this for over a decade now, but Dr. Biden’s visit last month was external validation of this simple idea inspired by my brother Stephen’s ALS — and the not-so-simple work that our …

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Spoons and forks – not just for summer picnics

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available. Here’s how it works: Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening. The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike with trekking poles in the woods. It may be hard to say ‘no,’ but easier …

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