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Taking My Own Advice

Blog Summary

In my job as a school counselor, I meet with high school students every day who struggle to balance the demands of their lives. I listen intently and guide them through strategies to use to help find contentment. But as I switch hats from my day job to my job as a mom to two young boys and a wife to a husband with MS, I often seem to forget to take my own advice.   Since my husband’s journey with MS began in 2015, I’ve struggled to balance. I worry about everyone all the time and forget to worry about myself...

Explorations of Progressive MS Reported at AAN 2019

Blog Summary

At last week’s Annual Meeting of the American Academy of Neurology (AAN), there was a dedicated session focused on progressive MS. To me, that’s an indicator of the ever-increasing awareness of the need for more research in progressive MS. I think this awareness can be directly linked to efforts of the International Progressive MS Alliance, in which I am involved (by the way, there’s still time to check out this recent Alliance webinar on solving progressive MS).    The AAN meeting involves large general sessions each morning followed by hundreds of parallel sessions and courses related to all types of neurological disorders. Dr. Claudia Lucchinetti of the Mayo Clinic gave a talk about the processes and biological events that scientists believe are involved in progression. One of those events appears to be obstructions in energy production in nerve cells by the mitochondria, the tiny powerhouses that drive cellular activity. This potential mechanism of interest is one reason why researchers are conducting clinical trials to test whether biotin (a B-vitamin) can “feed” the mitochondria and preserve their optimal function. We should know more about biotin when one phase 3 trialis completed around 2020...

Myelin Repair, Gut Bacteria, and When Does MS Begin?

Blog Summary

At last week’s American Academy of Neurology’s Annual Meeting in Philadelphia, I was struck by the tremendous progress we’ve made in understanding and treating MS. We are closer now than we have ever been to ending MS forever. I’m sharing some of that progress here, and I invite readers to browse the scientific summaries(abstracts) for yourselves, and also check out my colleague’s blog from the AAN, "Explorations of Progressive MS Reported at AAN 2019."  Myelin Repair Trials: I was excited to see first results from a small, open label trial of a thyroid hormone mimic called liothyronine to see if it is safe and holds promise for promoting repair of nerve-insulating myelin, a main target of damage in MS. The study was led by Dr. Scott Newsome of Johns Hopkins University, who received a grant from the National MS Society to support this trial. He reported that it was generally well tolerated, with GI symptoms being the main side effect. This kind of small study isn’t designed to detect actual myelin repair, but the Hopkins team is now analyzing other outcomes to see whether they see hints that a phase 2 trial is warranted (abstract S56.003)...

Working for Veterans

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On March 6, 2019, the National MS Society entered into a four-year Memorandum of Agreement with the Veterans Administration. This partnership will provide veterans living with MS comprehensive and coordinated care and services. Society president and CEO Cyndi Zagieboylo, a proud daughter of a veteran, reflects on what this means:...

Putting the Frosting on a Diagnosis

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When I was diagnosed with MS, I had four children under the age of six. Yep, 4 under the age of 6.    When I began experiencing numbness and tingling in my limbs, I was convinced I had a pinched nerve. I only went to the doctor because my HMO required a referral to see a specialist...

When are You Expecting to Expect?

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“So, when are you expecting to expect?” Literally the first question people asked me when I got married last year...

Life on MS Treatment

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Starting treatment for multiple sclerosis can be scary and life-changing on many levels.   It’s not just the inconvenience of having to fit a new medication into your schedule. It’s also the fear of side effects—not to mention the fear that comes when you find out your disease is progressing.

Always Looking Ahead

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There was a moment in my life when I just paused. I paused because of the uncertainly that was hidden right before my very own eyes. That uncertainty was delivered in four very short words in March of 2008, “You have multiple sclerosis.” Like many of us who have had to hear that same phrase, we have no idea what MS looks like from the outside because for some individuals, you will never even know… but we know what havoc it’s wrecking on the inside. At just 18 years old, I had to “power up” and accept the fact that I was now going to live with a disease I knew nothing to little about, except for what the dreaded search engine was telling me: no cure, disability, wheelchair bound and a lot of big medical terms...

Perspective… and Biscuits

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Here are a few facts: MS takes up a bigger piece of our lives than we would like. It has given us a different perspective. But it will not take our sense of humor. Recently, my husband and I got yet another denial letter from our insurance saying they won’t cover the sleep medication that is finally working for my husband. I know he is not alone in the battle for sleep; the tossing and turning, the burning, the pain, the inability to stay asleep, and then, weighing all of that against the feeling of being hung over the next morning with every other sleep aid he’s tried...

Fighting MS with Everything You Have

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MS saved my life. It helped me find balance. It helped me find my calling. When I was diagnosed in 2014 with relapsing-remitting MS, I experienced double vision, vertigo, and bone-crushing fatigue while my arm had a mind of its own...

Just Keep Going

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I grew up playing sports, but running was never my “thing.” ​ What I loved was the competition that came with athletics. During the summer, my friends and I would play football until dark when our parents yelled down the street “come home!” As I got older, I would play racquetball for hours, engrossed in the sheer intensity of the game...