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Thriving in the Face of Adversity

When I was first diagnosed with multiple sclerosis it felt as though my world had been turned upside down. At the age of 25 I had a very clear idea of what my future held, and where I was going. MS threatened to take all of that away from me, and I quickly decided that I would not let it. At first there were plenty of people telling me what I could no longer do, and that I should give up on my ambitions. But I disagreed. I sought out others who strived to make the best out of life and to make a difference despite their disabilities. I ran across so many inspirational people and communities, and soon began to feel invigorated and ready to fight.

I am a nurse, and it just so happens that neurology has always been my passion. When I was diagnosed with MS, it was really eye opening to be on the receiving end of healthcare, instead of being the provider. I realized that I now had a unique opportunity to have a positive impact on others living with MS, and I set out to do just that. I became an MS certified nurse just six month after being diagnosed with MS myself, and I began to work for my own neurologist. Currently I am finishing graduate school, and focusing mainly on writing and educating people about MS through my own site, JustKeepSmyelin.com, and several other websites and publications...

Progressive MS: Looking for answers NOW

People who live with progressive MS have many questions, but one I hear often is, “When will there be treatment options for me?” Based on what I saw and heard at last week’s AAN, I’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive MS. Several groups presented results or updates from large, ongoing studies involving people living with primary-progressive MS: one, a study of oral laquinimod, an experimental immunomodulator,  in 375 people with primary-progressive MS which recently began recruitment ; second, a clinical trial of oral ibudilast, an anti-inflammatory enzyme used in Japan, recruiting 250 people with primary- or secondary-progressive MS; and third, a study of ocrelizumab – an antibody cousin of rituximab delivered by infusion – in 740 people with primary-progressive MS that has completed enrollment. No results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way. I hope the findings provide us with new treatment approaches for people with progressive MS. (Abstracts # P7.210, P7.017) ...

MS Repair: Rapidly moving out of the lab and into people

When I was in the lab, my research focused largely on using mouse models of MS to test concepts that couldn’t be explored in people yet. Studies presented at this week’s AAN meeting are making it clear how far research has advanced since that time. Case in point: I never would have thought just a few years ago that I would be writing about myelin repair in people, not mice. So it was pretty exciting to see a presentation Wednesday evening showing the first results of a clinical trial of the myelin repair strategy called anti-LINGO, which is being developed by Biogen. This study involved giving this IV infusion or a placebo every 4 weeks for 20 weeks to 82 people who had experienced their first episode of optic neuritis. Optic neuritis involves inflammation of the nerve that connects to the eye, and it’s often one of the first signs of MS...

The plot thickens on diet and MS

To think that you might be able to change the course of disease, or at least relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. That’s why it’s been exciting to see how many researchers are trying to do just that at this week’s AAN Meeting. Diet and MS has been the subject of numerous platform talks and poster sessions, showing that clinicians and researchers are asking the same questions we hear so often from people living with MS. In a small study, Dr. Rocco Totaro and a team from the University of L’Aquila in Italy tested whether a six-week diet that was low in saturated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting MS. In their study, the percentage of body fat decreased, and fatigue as measured by a clinical scale lessened significantly as well. We need more and larger studies like this, to show how diet may impact symptoms that affect the lives of people with MS. What does it mean for you now? A healthy diet certainly can’t hurt, and it may even help both MS and general health. (Abstract P2.211) ...

Finding faster, easier ways to measure MS

When I was a lab researcher, it was all about digging deeper to find a specific scientific answer. But when it comes to helping people cope with their MS right now, we need to be able to find answers that don’t require so much digging. Emerging technologies and strategies are beginning to allow us to measure and predict the disease and its effects, and take stock of how treatments are working, without making people endure yet another invasive test. Now I find myself at the American Academy of Neurology (AAN) meeting in Washington, DC.  It’s been fascinating to hear about the many clinicians and scientists who are working to devise quick tests to detect MS activity and damage – often before there are any outward signs that the individual or doctor can see...

The Wahls Protocol: An Interview with Dr. Terry Wahls

We recently sat down with Dr. Terry Wahls to discuss diet and MS. Dr. Wahls is a clinical professor of medicine at the University of Iowa and a staff physician at the Iowa City Veterans Affairs Hospital, where she teaches medical students and resident physicians, sees patients in traumatic brain injury and therapeutic lifestyle clinics with complex chronic health problems that often include multiple autoimmune disorders, and conducts clinical trials. She also lives with secondary progressive multiple sclerosis, and has personally found great benefit in treating her MS through a specific program she calls the Wahls Protocol™...

MS Fatigue – or a Sleep Disorder?

I am very tired as I write this blog entry. I would love to take a nap, but I’ve got lots of work to do. This is not unusual for me; why do you think I drink so much coffee? I have written before about the difference between garden-variety tiredness caused by lack of sleep and the intense fatigue many people with multiple sclerosis suffer. Of course, a person with chronic fatigue can also experience regular tiredness, especially when we’ve been burning the candle at both ends...

Marijuana & MS: An interview with Dr. Robert Fox

This month, we sat down with Dr. John DeLuca and Dr. Robert Fox to discuss your questions about marijuana and MS, as part of our new Discussion of the Month feature. Read our interview with Dr. Fox of the Cleveland Clinic below. Our interview on marijuana and cognition with Dr. DeLuca can be found here...

Cannabis & Cognition: An interview with Dr. John DeLuca

This month, we sat down with Dr. John DeLuca and Dr. Robert Fox to discuss your questions about marijuana and MS, as part of our new Discussion of the Month feature. Read our interview about marijuana and cognition with Dr. DeLuca, Senior Vice President of Research & Training at Kessler Foundation, below. And check back tomorrow as we talk with Dr. Fox about how to talk to your doctor about marijuana, whether or not to continue on your other medications, what we know about various forms of cannabis and cannabinoids, and more...

We Must Rally for Medical Research

When I finished graduate school and decided I wanted to do research on neurologic disease, I went to work with one of the first women studying myelin, Dr. Marjorie Lees. Marjorie inspired me to build my research around understanding myelin and oligodendrocytes which are damaged in MS. Over the years, my research has built on her training and kept me focused on identifying how myelin is made and repaired in the brain. There has been very exciting, fast progress over the past two decades in identifying new therapeutics that reduce the immune component of MS, but there remains damage in the central nervous system.
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