I hadn’t left my house in weeks. Out of an abundance of caution, I had self-quarantined before it became mandatory by my state.
Usually, I would have had my “Infusion Day bag” with me: phone charger, sweater and lunch. But this time, my infusion would be different than the last five times...
Day and night, on good days and bad, it’s always there. Watching. Waiting.
I’m talking, of course, about my multiple sclerosis DMT injection...
When I realized that my Ocrevus infusion was scheduled shortly after the COVID-19 outbreak and initial uproar (scheduled for mid-April), I began to panic. Since I work in a hospital and am around germs constantly, I was not so much worried about being in the hospital to receive my medicine… I was mainly worried about not being able to get it at all.
With almost all elective procedures being put on hold, I was terrified that they would stop outpatient infusions completely. Therefore, I decided to call my neurologist and propose that we move up my infusion a few weeks to get it in and over with before things get worse from a virus standpoint. He agreed with that proposal and helped speed up my prior-authorization approval, and I was able to get my infusion about two weeks early...
No one can completely predict the severity of an individual’s clinical course of MS. That said, there are clues your neurologist, or a neurologically trained healthcare provider, can use that may suggest a milder or more severe disease course.
Clues include the nature of changes on central nervous system MRIs, the number of relapses occurring over the past several years, the nature of the relapses, the sites of tissue injury, and most importantly, the degree of neurologic recovery from the relapses. These clues are essential in choosing the proper disease-modifying therapy...
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...