Most of us know that depression is a very common symptom of multiple sclerosis (MS). What people may not know, perhaps because the topic is rarely discussed at dinner parties, is that suicide is one of the leading causes of early death in people with MS.
For this reason, I was interested in the presentation at ECTRIMS 2015 of the Swedish study entitled, “Multiple sclerosis and risk of completed and attempted suicide – a national cohort study. ” To be clear in our definitions, “completed suicide” is that which results in death and “attempted suicide” is that which does not.
Benign multiple sclerosis is a misleading and controversial term. Some neurologists do not recognize this as a form of MS at all. (Many people who meet the criteria for having benign MS will tell you that it certainly feels anything but benign.) Some believe that if people make it to 10 years without significant disability, they will not really progress to needing assistance to walk and may be able to stop treatment. Many others simply disagree with the classification and do not make treatment decisions based on a “benign” designation.
I sat in on one session at the 2015 meeting of the European Committee for Research and Treatment in Multiple Sclerosis, entitled “Long term course of apparently benign multiple sclerosis,” to see if the research was starting to clear the air.
We know a great deal about the epidemiology of MS in the populations of the United States, Canada and Europe. However, we don’t hear much about what is going on with MS outside of these regions, especially in the Arab world.
When I noticed a session at the 2015 meeting of the European Committee on Treatment and Research in Multiple Sclerosis, titled “Epidemiology of Multiple Sclerosis in the Middle East,” I eagerly attended to learn more.
Ninety percent of people with MS describe fatigue as one of the worst symptoms (I am one of them). Fatigue is surely the most common MS symptom, and it’s one that can really limit our functionality. I found out during a presentation at the 2015 meeting of the European Committee of Treatment and Research (ECTRIMS) that fatigue is also the most common reason for early retirement among people with MS.
Unfortunately, drugs have been disappointing in helping us manage or improve fatigue. The best results have come out of studies focusing on behavioral and educational interventions, many employing cognitive behavioral therapy (CBT)...
If you are reading this, you are using the Internet. If you leave a comment, “tweet” this, or post it to Facebook, you are using social media, which is defined as “websites and applications that enable users to create and share content or to participate in social networking.”
Many people with MS love to get engaged in social media and talk about their MS, as well as hear about the experiences of others. I’m at the 2015 conference of the European Committee for Research and Treatment in Multiple Sclerosis (ECTRIMS) and I was given the task to present a talk to neurologists entitled “How People with Multiple Sclerosis Use Social Media.” I’ll share with you what I told them.
About 5% of people diagnosed with multiple sclerosis are under the age of 18, usually as teenagers (for clarification, MS is classified as “pediatric” if it occurs in a person younger than 18). As remembered by pretty much every adult, this is a challenging time for virtually everyone, emotionally, socially, mentally and physically. Throwing in a diagnosis of MS can only further complicate matters as a young person is trying to figure out who they are and who they are becoming.
This is a difficult time for parents, as well. For parents of healthy teens, this is a period of learning when to let go, when to be firm and when to compromise. Many teens question their every move, just as their parents question many of the parenting decisions that they make throughout each day. In a study done on parents’ experiences of pediatric MS presented in a session entitled “Parent experience of pediatric multiple sclerosis” at the 2014 Joint ACTRIMS-ECTRIMS Meeting, all of these same dynamics and feelings seem to play out, but in a much more intense way...
I imagine that almost all of us that have relapsing-remitting MS have been treated with Solu-medrol (intravenous methylprednisolone). I also imagine that many of us who were treated with Solu-medrol have a horror story, or at least a complaint, about this treatment.
Yes, the effects can be almost miraculous – I have dragged myself into the clinic blind in one eye and after a one-hour infusion, I have stood up and briskly walked out with full vision. Of course, I also tasted metal and felt like I had swallowed acid, after pouring some of it on my face. I have described treatment with Solu-medrol as being like someone offering to remove a bear trap from my leg, while knowing that they are going to punch me in the face as soon as it is removed...
I was thrilled to be able to attend the teaching course on Pregnancy and MS during the 2014 Joint Meeting of the American and European Committee for Treatment and Research in Multiple Sclerosis.
I wanted to see if there was any new information – not for myself, since I do not plan to have any more children, but to see if things have progressed from “go ahead and try and we’ll see what happens.” When I conceived my twins 9 years ago, there were many fewer therapies available and some docs were still recommending that women with MS not have children. I figured that by now, there would be concrete recommendations and a flow chart to tell women exactly what they should do to make sure all things went smoothly...
It is not often that I feel “lucky” as a person with MS, however, I do feel extremely fortunate to have never had to endure a mood disorder as a symptom of my disease. For a very brief time when I was younger, I suffered with periodic depression as a symptom of premenstrual syndrome, and that was enough to give me the tiniest glimpse into the horror of a mood disorder. When I was diagnosed with MS and learned about the variety of symptoms that I could encounter, my fear of depression and cognitive dysfunction far outweighed my fear of losing mobility.
Since depression is a well-known symptom of MS, I was shocked to learn at the 2014 ACTRIMS-ECTRIMS Meeting that more people with MS have an anxiety disorder than have depression. A study of 7786 adults with MS showed that 54.1% had “excessive symptoms of anxiety,” while 46.9% had “excessive symptoms of depression.”...
Parties, holiday or otherwise, take many different forms, such as:
children’s parties (think 20 six-year-olds, wild with excitement about opening presents and fueled by sugar, sugar, sugar)
an office party on a Friday evening (think 30 adults, happy to be done with the workweek, getting a little loud and maybe tipsy as they discuss interoffice gossip)
a family celebration (think about all of the emotional baggage that comes with this particular mix of people, not to mention your role in preparing the meal and other tasks)
Any of these scenarios can be draining for anyone. However, people with MS have specific symptoms related to the disease that can make parties like this particularly demanding — emotionally, mentally and physically.