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Life on MS Treatment

Blog Summary

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.

Precision Medicine in MS – What Will it Take?

Blog Summary

I’ve just come back from an exciting meeting in Dallas hosted by ACTRIMS (Americas Committee for the Treatment and Research in MS).  The focus was precision medicine. It’s the idea of using a person’s genetic background, environment, lifestyle and other factors to develop a customized approach to treat MS.   More than 1200 clinicians, young investigators and seasoned researchers gathered to consider what precision medicine would look like for people with MS, and the challenges and opportunities in getting closer to precision medicine. If you’re interested, you can browse the summaries of the presentations here...

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...