You’ve just been diagnosed with MS. You’ve heard about the disease (“OMG, I’m going to be in a wheelchair”). You’ve heard something about the medications that are now available for MS, but know little about them. You’ve seen other people with MS, but how does their course relate to yours? What can you do to prevent disability?
These and many other questions crowd in on you, and it all seems overwhelming. You need to spend more time with your neurologist or nurse specialist, but don’t know where to start. Hopefully the following questions to ask will be a guide for you...
I never saw it coming. Not in a million years.
Acupuncture? Needles all over my body? There was no amount of money you could pay me to do that...
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.
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...
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...
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...
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...
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.
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...
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.
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)...