July 24, 2024

Hey - July is winding down and I'm not angry about it. I know people love summer🌞 and all that it represents - fun, 😎 frolicking in the water,  🌊 eating ice cream🍦and watermelon, 🍉 family reunions, etc. Don't get me wrong - I love all of those things too but it looks very different viewed through the filter of MS. This heat is PAINFUL. I'm locked in the air conditioning and still, my body is reacting poorly to the heat, humidity, and roller-coaster barometer. Fall is my favorite time of year. 🍁  I'm not wishing time away. However - I am looking forward to a break in the heat and how my body reacts to it. I bet YOU can relate, amiright? Enough lamenting the heat. Let's see what's up in MS:1.  Starting with a shout-out to a bunch of you: where are my Mondafinil folks?? I know there are a ton of you. This stimulant drug is used for fatigue in MS among other things. In this review of published studies, "treatment with modafinil, a stimulant approved in the U.S. for treating certain sleep-related disorders, significantly reduced fatigue and improved overall quality of life when used in clinical trials for people with MS."  Sounds good, right? Hold on. "However, its use was linked to a 30% increase in adverse events such as insomnia and gastrointestinal symptoms when compared with a placebo." Modafinil reduces fatigue, improves quality of life in MS: Analysis2.  The terms "active" and "inactive" MS get thrown around - but what do they really mean? Beats me. 🤷🏼‍♀️  Let's learn together:  Your FAQs and Answers around Active vs. Inactive Multiple Sclerosis3.  From getting enough sleep to doing brain exercises, there are steps you can take to preserve and possibly improve your cognitive health. 10 Ways to Preserve Your Brain Health if You Have MS4.  Did YOU have a lumbar puncture (spinal tap)?  Levels of the immune cell protein CHIT1 at diagnosis, taken from the spinal fluid via a spinal tap, may strongly predict how fast disability progression will occur in people with MS, a new study suggests.  CHIT1 levels at diagnosis may predict future MS progression5.  Good news/bad news: People with multiple sclerosis (MS) tend to experience a short-term reduction in disability and brain lesion volume after receiving stem cell therapy, according to a meta-analysis of nine studies detailing randomized clinical trials.  However - that's it for the good news. Unfortunately, researchers found no difference between the treated and the untreated patients by the 1-year mark.  😔  Stem cell therapy leads to short-term disability reduction in MS6.  New research, led by the University of Southampton and University Hospital Southampton, shows that inflammation outside the brain, such as that caused by common infections such as colds and UTIs, is linked to the progression of MS. 😳  Multiple sclerosis progression linked to immune response outside the brain_______________________________________

KATHY RECOMMENDS:

Sex in Training. WHAT!?!? You read that right. But it might not be exactly what you're thinking. This is a fantastic email that my dear friend and fellow MS advocate Jackie Zimmerman writes about her journey to become a certified sex educator and coach. She plans to use that certification, in particular, to address the heretofore (check me out with the big words) under-addressed topic of sex in disability and chronic illness. Cool, right? She's a great writer who also employs sass and smart-ass in her writing. Sound familiar??? 😉 It's super interesting and educational. From Jackie: Join my email list to follow along as I explore podcasts, books, and training about sex and sex history. You'll get updates, recommendations, and insights from my studies.  Sign up here: Sex in Training

Clinical Trials Recruiting MS Patients NOW

Functional Balance Intervention in Multiple Sclerosis (FBIinMS) 

Study 1: Effect of lab-based Functional Balance Intervention (FBI) for physical and cognitive symptoms of Multiple Sclerosis.

Study 2: Feasibility of home-based FBI for physical and cognitive symptoms of Multiple Sclerosis.Incremental Vestibulo-ocular Reflex Adaptation as a Novel Treatment for Dizziness in People With Multiple Sclerosis (DIIVA-MS)The study aims to study the effects of a novel treatment for vestibular symptoms in people with multiple sclerosis. The main objective is to determine whether daily personalized gaze stabilization training is more beneficial than intermittent gaze stability training in people with multiple sclerosis

That's all folks. Let me know if you have any questions or if I can help you in any way. Otherwise, just keep saying FUMS!! 🧡Cheers -- KathyKathy Reagan YoungFounderFUMS

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