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Life when your teenager has MS

Blog Summary

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...

MS Genetics Research Hits Home

Blog Summary

People affected by MS sometimes ask me: “It’s great that they found another gene that is linked to MS, but what does it mean for me?” Well, the genetics research I’ve heard about at this week’s ACTRIMS-ECTRIMS meeting has given me great answers. Dr. David Hafler (Yale University) launched the discussion when he delivered the keynote lecture during the opening ceremony. Dr. Hafler and others founded the International MS Genetics Consortium, a team that has turned MS genetics on its ear...

Does oral methylprednisolone work as well as Solu-medrol to treat MS relapses?

Blog Summary

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...

Is diet a risk factor for MS?

Blog Summary

Many of us with multiple sclerosis follow specific diets in hopes that eating in a specific way will slow disease progression or at least keep our symptoms at bay. I’ll fess up about what I do, which is basically follow a regimen that is dairy-free, legume-free and gluten-free, with almost no sugar or processed foods. However, I will admit that I eat plenty of fat, including massive amounts of olive oil, coconut oil and some red meat. I am caffeine-free, but drink some alcohol. I guess it’s pretty similar to the Paleo Diet (if cavemen drank wine). It seems to be working for me and I keep honing it as I notice things that make me feel worse (or better) when I eat them. Of course, there are several different diets that people with MS follow, including the Swank Diet, the Best Bet Diet and the Wahls Protocol. Many neurologists will point out that no diet has been proven through rigorous scientific study to make any difference in disease progression or disability. But what about diet impacting your risk for developing MS? ...  

Rapid Progress in Research on Cell-Based Therapies – Including Trial Results from Cleveland Clinic

Blog Summary

Cell-based therapies that have the potential to both stop MS in its tracks and restore lost function are getting a lot of attention at this week’s ACTRIMS-ECTRIMS meeting. Stem cells can be found in different tissues and organs and under the right circumstances, can transform into specific types of cells when needed to repair injuries. These stem cells represent a promising area of research for both slowing MS activity and for repairing the brain’s myelin that has been damaged by MS. But – Which cells? Given how? To whom? How often? – are some of the big questions that need to be answered with ongoing research. And while this approach has much promise, it is still experimental and not yet proven to work. Read more about different approaches to research into stem cells for MS...

So, you have MS and you want to get pregnant…

Blog Summary

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... 

Exciting News for Progressive MS Research

Blog Summary

Hello from the ACTRIMS-ECTRIMS meeting in Boston. Today I had the honor of participating in a press conference to announce important news about the International Progressive MS Alliance. I was joined by my colleagues from around the world to share the Alliance strategies for ending progressive MS, and we also answered questions from a room full of reporters from around the world. The Alliance announced the launch of 22 new research grants to investigators in 9 countries, who will be taking intriguing new approaches to overcome barriers to developing treatments for progressive MS. Many of the new grant recipients were at the press conference, and the atmosphere was electric! ...

Anxiety and MS

Blog Summary

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.”...

Finding Solutions at the World’s Largest MS Meeting

Blog Summary

I’m pleased to be reporting from the 2014 Joint ACTRIMS-ECTRIMS Meeting in Boston. This is the largest gathering of MS professionals – more than 7,000 attendees from 90 countries. What a fantastic place to learn about how researchers around the globe are finding solutions to help everyone with MS live their best lives. Take Dr. Laura De Giglio and her team from Rome, Italy, who are studying how “brain training” may help people with MS to restore cognitive function. At last year’s meeting, this team showed that Nintendo’s Dr. Kawashima Brain Training™ improved attention, processing speed and working memory in people with MS. What they report this year is even better news. The team used functional magnetic resonance imaging (fMRI), which allows researchers to take active images of the brain while a person is performing certain tasks. The idea is that it helps researchers to see how a particular treatment is affecting the way specific parts of the brain are functioning...

Why I took the ALS Ice Bucket Challenge

Blog Summary

Like thousands of individuals around the world, I took the Ice Bucket Challenge last week. You might wonder why I took the challenge given that my focus at the National MS Society is to find solutions for people with multiple sclerosis. MS is a completely different disease, after all... 

HSCT – Will This Form of Stem Cell Therapy Soon Become the Standard of Care for Many MS Patients?

Blog Summary

Hematopoietic Stem Cell Therapy, now there’s a mouthful. More commonly known by its initials, HSCT, this form of stem cell treatment, first tried on MS patients back in the mid-1990s, is beginning to demand widespread attention from doctors and patients alike. Why? Well, one recent study found that when applied to properly selected patients, nearly 80% showed no sign of multiple sclerosis disease activity five years after treatment (click here). No relapses, no new MS lesions, no disease progression – none. Eye-popping results to say the least, all the more so given the fact that these patients were treated on a one time only basis with no follow-up drugs or therapy required. Results like these have led even some mainstream MS neurologists to begin looking at HSCT as perhaps evolving into the standard of care for many patients in the not-too-distant future. With growing momentum, stem cell therapies of all types are creating a huge buzz in the MS community. While one form of stem cell therapy – that intended to regenerate damaged nervous system tissue – is clearly still in its experimental infancy, another, hematopoietic stem cell therapy, which seeks to reboot the immune system, has been used on MS patients for almost 20 years. Early attempts at using HSCT to treat MS, though at times producing encouraging results, were fraught with danger, with as many as 10% of test subjects dying as a direct result of the procedure. Recent refinements in technique, better patient selection, and a growing knowledge base are now bringing HSCT closer to mainstream use as efficacy rates have soared and mortality rates have dropped dramatically. In the case of the best treatment centers, mortality rates have dropped below 1%, with no deaths reported over the last five or so years...