Did You Know?

GreACTRIMS.jpgetings 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.
The topics of the posters at this meeting are so wide-ranging in their themes that I thought I’d share some of the random things I’ve gleaned so far. Did you know? (I didn’t…)
  • That people with MS who get care from neurologists at MS Centers are much more likely to receive disease-modifying therapy than people who get their MS care from a primary care physician? This is according to a new study by researchers from Temple University (Read more here).
  • People in our social network can influence so many aspects of our lives, like our diets, physical activity levels and even infections? According to researchers at Columbia University and collaborators studying people with close relatives with MS, having a social network that includes a high proportion of people who don’t go to doctors regularly is strongly linked to self-reported disabilities (Learn more here).
  • That African-Americans with MS experience faster nerve degeneration—seen at the back of the eye—than Caucasians with MS? The team from Johns Hopkins and collaborators suggest this raises the question of whether this population may benefit from more aggressive therapy (Find out more here).
  • That a sample of MS doctors who were surveyed rarely use confirmed methods to detect cognitive issues or depression in their patients with MS? Furthermore, they don’t necessarily refer them to neuropsychologists, even if they detect mood or cognitive changes. This was reported by researchers from the University of South Florida (Read more here).
There are many other studies being presented, including lots about advances toward repairing myelin that’s damaged by MS. You’ll see more from our team in the coming days. In the meantime, feel free to have a look around yourself–the online abstracts (scientific summaries) of the ACTRIMS Forum presentations and posters are up and open for all to explore.

Also, check out our complete recap from ACTRIMS!
Tags Research, Symptoms, Treatment      1 Appreciate this
| Reply

Claude Schofield, PhD

Dr. Claude Schofield is Director of Discovery Research at the National MS Society. He began his career as a biomedical researcher, focused on the nervous system. He research has been published in Journal of Neuroscience, Proceedings of the National Academies of Science, and Neural Development.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.


  • Deanna Yeakle   Feb 5, 2018 2:34 PM
    I haven't used a disease altering drug for a long time. The reason is that they all seemed to have side effects that made me more homebound, more sick in ways other than the MS itself. I am finding that physical therapy helps me a lot. Unfortunately now I have more cognitive problems, is there anything new on that front. What can help?
  • Debbie Coning   Feb 15, 2018 5:11 PM
    Any research regarding use of stem cells in MS patients? There's a wonderful documentary "The Healing Miracle, The Truth about Stem Cells" by Jeff Hays... Really exciting... use in a multitude of conditions including MS... :)
  • Ann Crutchfield   Feb 15, 2018 5:47 PM
    Would moving to a sunnier spot help my progressive ms?

    Thank you!
  • Helen   Feb 15, 2018 5:53 PM
    My eye doctor swears I have Wet Macular Degeneration in one eye. I beg to differ since I had a blood clot in the other eye years ago that diffused into the vitrious and later dissipated (2 years later,) The blood vessel that burst in the supposed Wet Macular one changes all the time. They told me it would just get worse and I would go blind. That was 6 years ago...I believe Wet Macular could be an MS thing with just a blood vessel problem...
  • Harold Pullins   Feb 15, 2018 7:59 PM
    At 63, I find my journey to disability is progressing faster than I like! Falling more often. Balance more evedent than ever. Having to concentrate and more focused just walking. Even with my walker with wheels.. Strange, very few days I can stand and bend over better than in the past. Gather clothes for laundry, take my shower and ever bend over and pet the dogs.. They love that. Been on Aubagio for about three years. Doesn't seem to be as effective as in the past.. Something maybe that would help my balance?
  • Audrey   Feb 16, 2018 7:22 AM
    Even from my neuropsychiatrist, I have been told that any bipolar symptoms (especially depressive states) have nothing to do with my MS. I disagree. Furthermore, I am told that the cognitive decline I experience is likely due to medications and mood. That can have some truth. The cognitive issues can get worse on some meds and when stressed.

    But essentially, I'm blown off.... Cause to say that the brain-only lesion MS that I have could be causing disturbances in mood, impaired cognition, impulsivity and impaired judgment (these last two are also classic bipolar) all makes up a case that seems to be much harder for my doctors to understand. It "sounds" more psychological than anything, and is often thrown in that box. It is both physical and psychological. It isn't seen and falls almost entirely on verbal reporting of symptoms. Yet, as it gets worse, for me speaking and voicing my symptoms gets harder. By then, many physical symptoms are present which doctors are more than happy to test for and treat. Spasticity? See that! Got it. Muscle relaxers. Trouble walking? PT. Glad they do these things but where were they when I was LOSING MY MIND? Most doctors want to see some test results... something to guide them towards diagnosis and treatment. Even though lesions are visible on MRIs, this doesn't explain how someone feels, how they will act, or how rapid their cognitive decline may be or in what areas (although science is improving in this area). It is up to the doctor and patient through communication to know what feelings, actions, memory and other cognitive issues are taking place. Neuropsych is great to have in the myriad of specialists one might have, and I've found that while they are a good addition to the team, they can also lack understanding of this type of MS.

    It makes sense that some doctors want to hear "MS" and jump to conclusions about how it will be manifesting. That's how most disease processes work. Exactly one way. Really, doctors should hear "MS" and automatically assume that it's just gonna be different... in some way... than any previous case they've ever had.
  • Brenda   Feb 16, 2018 3:41 PM
    Thank-you Audry for your write up. My husband experiences the same issues but with memory loss on top of it. He gets mad and acussas people of lying or plotting against him. I to think bipolar plays a big part in some people with ms. I get really discouraged with the doctors , they look at me like Don't no what I'm talking about. And my husband denies his actions.
  • Dee G   Feb 17, 2018 11:39 AM
    Audrey: I know all too well what you mean: Cognitive issues, memory recall, just general "fibro fog" and at times a general sense of "mental slowness" are all too often just acknowledged with "its probably not MS related".One of my great docs refers to such problems as "Silent Symptoms"---Silent to others (no quantitative evidence like test results, etc) but NOT at all silent to those dealing with them. When people shrug it off and figurativly say "it''s all in your head!!" that's so frustratiing. Because it IS LITERALLY in your head.

    To you and others (myself included) hang in there. Things do change and have improved over the years. Still ways to go.
  • Deborah Delgado   Feb 17, 2018 8:47 PM
    Last year I had a very late in life(late 60's) diagnosis of primary progressive MS. I am very fortunate to have an excellent neurologist who has directed me to go through all the required tests, MRIs, spinal tap, etc. and has gotten me started on Ocrevus, an IV infusion given every 6 months and only last year approved for primary progressive MS. My right side is impacted but I am left handed so I am not debilitated by it. I have the additional good fortune of getting acupuncture treatments every other week and this has been extremely helpful. I'm still astounded to read some of these comments and note that there are still doctors who don't get it...that EVERYTHING in the body is connected. Depression, bipolar symptoms, short term memory loss, balance, whatever is going on is ALL connected and impacted by the MS. We are our own best advocates and we must each continue to speak our own truth until we are believed and validated.
  • Pamela Buesi   Feb 19, 2018 7:17 AM
    Hi I represent an organization in Honduras for MS patients and ALS patients I am also an MS patient and we would really love to hear from you guys.
  • Carrie   Feb 19, 2018 11:42 AM
    I was diagnosed in 2016 at age 46 with MS after 6 years and dozens of doctors/tests trying to figure out what was wrong with me. Which I am finding out is the case with many MS patients, sadly.

    My Neorolgist is still calling me relapsing, but I have been in constant relapse now since early November. She is telling me the only true test is mri’s and how I tell her my symptoms are changing or impacting my daily life.

    I had a cognitive test last March 2017, and for someone with two college degrees it was heart breaking. I can tell my memory has deteriorated short term and long term. I find myself searching for words, which is a new symptom. The hardest part to get my failing mind around is my loss of memory in reading, I would read constantly to escape, now I have to re-read to remember what I had just read.

    I have been having failing eye site, constantly having back pain, bouts of dizziness, losing my balance and more migraines that I am dealing with, but when your mind starts failing too, it’s almost like all the medicine and doctors really have no idea what they are doing.

    So I am lucky to have a great support system at home, just not in my own mind and body!
  • John Wolff   Feb 20, 2018 5:43 AM
    Thank you.
  • Sandra Horwitz   Feb 21, 2018 2:17 PM
    My son has M.S. and we live together. I really appreciate reading the publications you send to me. It answers many questions I have, and it keeps me in the information "loop". Please keep sending me information.

    Sandy Horwitz