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Laura Kolaczkowski- It’s not often that we find a study for MS that might yield results that benefit the person with MS, our doctors and a major pharmaceutical company – and all for the small cost of around $100. Biogen Idec, the pharmaceutical company that makes Avonex, Tecfidera, Tysabri, Plegridy and many more MS drugs in the development pipeline, recently announced results of their study on ways to get us moving and how to track those results in a meaningful way. They had 250 people with MS fitted with Fitbits, a small electronic activity tracking device that can be worn on the... Read more
Ashley Ringstaff- I have been thinking a lot about something that was recently brought to my attention. I was asked, “What caused your MS? What or who is to blame for it?” So I was sitting there trying to come up with an appropriate answer, then my mind wandered and I thought… You know, this would be a great thing to write about. It’s a really good question though, who is to blame for getting Multiple Sclerosis. Is it something I did? Am I the one to blame for getting it? Was I exposed to something by someone else that ‘triggered’ my... Read more
Marc Stecker-Wheelchair Kamikaze- I’m scared. There, I said it. Actually, the word “scared” hardly suffices; I guess “terrified” would more fit the bill. Fear in copious amounts might as well be listed as one of the symptoms of MS. I’ve talked and corresponded with hundreds of MS patients, on topics ranging from treatment options to conjecture about the nature of the disease to the day-to-day strategies we employ to simply get by, and though it’s often unspoken, all of these interactions share one inexorable feature: an undercurrent of fear, at times more prominent than others, but even at its quietest, always present. Multiple... Read more
Editorial Team- On April 16, Novartis announced the Food & Drug Administration (FDA) approval of Glatopa, the first generic alternate for Teva’s widely used multiple sclerosis therapy, Copaxone. The once per day therapy was developed in collaboration between Novartis’ Sandoz unit and Momenta Pharmaceuticals for treatment of relapsing multiple sclerosis patients. The only other generic available out of approximately 10 multiple sclerosis medications is for mitoxantrone. Copaxone accounts for approximately 30% of prescriptions, the largest for multiple sclerosis treatments. Launch timing and cost of Glatopa have yet to be released. “We think there is really substantial demand across the board for getting a lower-cost generic product into the marketplace here,” said... Read more
Matt Allen G- Notice that the title reads “Dealing With Poor Memory” and not “Dealing With Memory Loss”. I carefully chose these words because in my own experience and from what I hear from people, we don’t actually lose our memory, we lose the ability to find it in our brain but it is still there. Most often that is… What do I mean? Well imagine a computer; you may use a search bar/engine to find a file and if that file is there it will find it. If what ever you are looking for were actually gone it would not find it;... Read more
Kim Dolce- You know when you discover a way to prepare one particular green veggie that makes you want to eat more of it, and that discovery suddenly makes other healthy behaviors fall in line behind it with the elegance of a Domino chain? I love when that happens! Such a happy event occurred several weeks ago. In January I had decided that my sole focus of 2015 would be on establishing healthy eating and exercise programs and maintain them as permanent modifications for the sake of my strength, overall health, and independence as a person with MS who is living alone.... Read more
Cathy Chester- This post is not specifically about Multiple Sclerosis but my experience with kidney stones. The principles of advocating for yourself is applicable to anyone living with any health issue. Last week I had the first of two lithotripsies, a procedure performed to break up kidney stones in order to make them passable through urination. I wasn’t nervous. I had this procedure six years ago. Yet the thought of lying on yet another cold, flat metal table (I’ve had appendectomy and gallbladder surgeries) while a medical team knocks you out (if you’re awake the blasting of stones would be excruciatingly painful)... Read more
Laura Kolaczkowski- I really like the services and information provided on the Consortium for Multiple Sclerosis Centers (CMSC) website. They do a great job of posting current takes on the best of the research news, and they also sponsor the largest MS conference/convention for clinicians and researchers that takes place annually in the U.S. The CMSC certification and membership is the gold star standard for MS neurologists- there are rigid standards the MS doctors must maintain to get this seal of approval. They must also pass special MS exams and participate in administering/overseeing clinical trials. In other words, CMSC members have their... Read more
Kim Dolce- I don’t know what is more challenging, being a writer or being a person with MS. Both could be regarded as diseases in that both require a genetic predisposition and an environmental trigger to activate them. And both have a cogent element of mystery. I’ve been a writer longer than I’ve had MS. I was diagnosed at age 47 and retired on SSDI at 52. Since my retirement, I’ve lived a more authentic life than ever before. My working life was spent in offices as an admin assistant. I hated business, had no talent for or interest in it, and... Read more
Laura Kolaczkowski- An automobile insurance company advertises they will drastically cut your rates if you allow them to put a device in your car that tracks your mileage and driving habits. Yes, they want to track where you drive, how often you drive and what time of day or night you might be behind the wheel. My reaction to this company’s offer to save me money was ‘no way!’ but in harsher terms. I don’t want my insurance company monitoring me like that – when I come and go and how much I drive is solely my business. So why would I... Read more
Marc Stecker-Wheelchair Kamikaze- I’ve recently heard from several people who are on the verge of needing wheelchairs, saying that my Wheelchair Kamikaze videos have helped them and their friends and families see that being in a wheelchair does not diminish the person sitting in it. That’s a very hard and important realization to come to, and I don’t mind saying that wrapping my mind around the fact that I was now “the guy in the wheelchair” was one of the most difficult adjustments I’ve ever had to make. As I wrote in my previous post, the process of getting my wheelchair was a... Read more
Lisa Emrich- I recently had a great conversation on Twitter about a particular off-label treatment that some patients use, or have tried, to combat various diseases, including multiple sclerosis. According to evangelists, ie, fans of the drug, this relatively inexpensive compounded medication treats such a wide variety of ailments that it just might lean toward miraculous. The name of the treatment is irrelevant to the following conversation, so I’ll just say that fans of the treatment talk about how great it is. I’ve rarely seen discussions of its potential ineffectiveness or negative side-effects in MS forums. But I have read how it... Read more
Editorial Team- We at MultipleSclerosis.net are thrilled to share our very own Stephanie Butler’s incredible TEDx Talk! TEDx Talks are renowned for providing audiences around the world with incredible, well-formed ideas in a small amount of time – less than 18 minutes, to be exact. The purpose is to share new ideas, inventions, or compelling new perspectives in a short yet powerful presentation. It is with great pride that we share about one of our contributors, Stephanie, recently giving such a presentation at the TEDxHerndon 2015 conference. Stephanie is an MS nurse as well as patient with RRMS. She is also a self-described fitness enthusiast, science nerd, and eternal optimist.... Read more
Donna Steigleder- Are you prepared to spring into action for an emergency? Just because you are a full time caregiver, doesn’t mean the world stops sending you other challenges so you can focus on the one needing your care. Most of us have other family members—children, parents, siblings, even close friends or others who are near and dear to our hearts. What happens when they have a crisis and they need you? It’s a good idea to have a plan in place for just such an emergency. Last weekend, my Mom seemed to be having a stroke. Suddenly, she could not say... Read more
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Yesterday was a step for me. I had my first ‘therapy’ session. I recently spoke with my neurologist (well, the PA) about some of the feelings I had been having lately and not being sure whether they were related to post-partum depression, MS-depression, or just depression-depression. She suggested I meet with a lady [LCSW] at the Rocky Mountain MS Center who specializes in MS and ‘talk.’ It sounded like a plan to me! I do a lot of talking already for my career and just in life so this would likely work well [hopefully]. I almost felt like I knew...
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