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I Got 99 Problems and 87 of Them are Side Effects

Blog Summary

When I was first diagnosed about 5 years ago, I was prescribed Rebif, which is a subcutaneous injection, injected 3 times a week.
 
Now, as if being suddenly diagnosed out of the blue at 22 years old again, I’m losing feeling in my hands, feeling like I'd lost everything I worked for previously. I now had to comprehend injecting myself 3 times a week all over again with what felt like super strong acid...

Time for an MRI

Blog Summary

My appointment is at 3:30 p.m.   Some 25 miles away from my home.   The clock says it’s only 12:53 p.m..   Although it won’t be rush hour when I drive to the hospital, you never know what will happen when it comes to Boston traffic, so I want to provide myself a cushion of extra time, so I won’t be late for my annual MRI...

MS & Movement

Blog Summary

One of the things I love about attending the Annual Meeting of the Consortium of MS Centers is how many studies focus on pinpointing problems in the daily lives of people with MS and how to find solutions. This is the point of rehabilitation–to restore or maintain function as much as possible. One problem that is being investigated is sedentary behavior, also called “sitting time.” Researchers from the University of Alabama at Birmingham and colleagues around the country administered a physical activity questionnaire to more than 6,000 people with MS...

This Side of Hope

Blog Summary

My mom has lived with MS since her 20s. She was diagnosed before I was born, so MS has always been something that is a “normal” part of my life. Through the years, MS has thrown her some curveballs, but my mom has always found a way to adapt. She’d put on a smile and learn a new way of doing something she loved and wasn’t willing to give up. She is strong and resilient, and this has impacted me in the most extraordinary way.

Bringing Us Closer

Blog Summary

Living with MS can sometimes feel like you’re stranded on an island by yourself. People who don’t have MS might not fully understand what you’re going through, and others living with MS may have symptoms and experiences entirely different from yours. To make the MS world smaller, this year’s World MS Day (May 30) theme is “bringing us closer.” It’s about building connections and sharing stories to unify us in our collective stand against MS. Connect with the researchers, students and nurses who are at the forefront of finding a cure to bring us closer to a world free of MS. Meet two of our researchers and learn how their work is #BringingUsCloser to a cure...

Thinking About Emotional Wellness

Blog Summary

Last week, I attended the American Academy of Neurology meeting in Los Angeles. There were several studies presented on aspects of emotional health, and it got me thinking about how important it is to remember that our emotional health can affect many aspects of living with MS. Research has shown that anxiety and depression can occur as MS symptoms, not just as reactions to having the disease. One poster presentation I saw was by Canadian researchers, who generally do a pretty good job tracking people with MS because of their unified health systems and electronic records. They reported that anxiety (and diabetes) could have a negative impact on a person’s cognition. The researchers commented that it’s possible that treating diabetes or anxiety could improve cognitive problems for people with MS.

Repairing Myelin to Restore Function

Blog Summary

There were many talks about some really interesting and promising research at the 2018 ACTRIMS Forum. What’s great is that you can browse the online abstracts (scientific summaries) of the ACTRIMS Forum presentations and posters to see for yourself.   One of the most interesting and exciting talks I heard was presented by the latest winner of the Barancik Prize for Innovation in MS Research, Dr. Robin Franklin from Cambridge University. This is the first time that the Barancik Prize has been presented at the ACTRIMS Forum, and he gave a great lecture (here’s a video that introduces Dr. Franklin, in case you’re interested)...

Did You Know?

Blog Summary

Greetings from the ACTRIMS Forum 2018! This 3-day meeting brings together almost 1,000 MS-focused health care professionals, such as researchers and neurologists, and lets them share their latest research findings. I wanted to share with you a few of the amazing things I’ve learned so far at this inspiring meeting.   There are plenty of lectures from experts who were invited to review the latest research on specific topics. Then there are also presentations by investigators who submitted summaries of their results to the meeting organizers, for possible acceptance as either lectures or as posters. I happen to love poster sessions. Kind of like a science fair, you can go up to researchers and their posters and talk to them about their work...

Hope

Blog Summary

When I was 18 years old, I moved out of my parents’ home to live with my non-English speaking uncle, who had recently been diagnosed with primary-progressive multiple sclerosis. Shortly after his diagnosis, my uncle lost his job, his wife divorced him, he could no longer walk without a walker, and he was left feeling weak and hopeless. By being his primary translator at doctor visits, teaching him how to self-administer Copaxone injections, taking him to the ER after adverse reactions to treatment, explaining how one treatment compares to another, and emotionally supporting and encouraging him to never quit fighting, I witnessed firsthand what an individual with MS struggles with daily...

Addressing the Drug Price Crisis

Blog Summary

As the founder and co-chair of the House Prescription Drug Task Force — the only group of Members of Congress dedicated to addressing the drug price crisis — I am committed to advancing legislative and regulatory solutions to lower the cost of prescription drugs. Before I signed the pledge, I was already working to make medications, including multiple sclerosis medications, more affordable. We have made many strides in research and treatment, but an unaffordable drug is 100 percent ineffective. The National MS Society is a strong ally in addressing the problems of accessing medications, including rising drug prices. With nearly a 400 percent increase in the price of multiple sclerosis medications from 2004 to today, the MS Society’s initiative to make medications accessible comes at a critical time. Rising prices are about more than just one CEO, one drug manufacturer, or one drug.  Across the board we are seeing increases that put treatment out of reach of too many...

MS Symptoms: Researchers Look for Life-Changing Breakthroughs

Blog Summary

Stopping the effects of even one MS symptom can be a life-changing breakthrough for an individual with MS. I’m encouraged by the many strategies I heard about at ECTRIMS and its companion meeting, Rehabilitation in MS (RIMS), and am hopeful that they can soon be put into action to change the lives of people with MS.Fatigue – Dr. Vincent de Groot (Vu University Medical Center, Amsterdam) reported results from three clinical trials, each testing a different strategy to see if it could lessen fatigue over 16 weeks in approximately 90 people with MS: aerobic training, cognitive behavioral therapy, and energy conservation management.  Only cognitive behavioral therapy effectively reduced severe fatigue in this short-term study. We know that psychological interventions are a part of managing fatigue, and these results certainly support that...