Struggling with MS fatigue? You aren’t alone. Approximately 90% of people living with multiple sclerosis deal with fatigue. An overwhelming sense of tiredness can be disruptive at work and take away from your family time and social life. This podcast dives into the different causes of MS fatigue including disease impact on nervous system, medications and poor sleep. Approaches to improve both mental and motor fatigue are highlighted including energy conservation strategies, exercise and workplace changes. Fixing sleep issues can substantially help fatigue. Treatment options reviewed for causes of poor sleep including anxiety, restless legs, leg cramps, need to urinate overnight and sleep apnea. Medication options for MS fatigue are reviewed including amantadine, modafinil, armodafinil and amphetamines.
Randy from Must Stop MS! was diagnosed with multiple sclerosis in November 2012. Initially he was worried about his future: wheelchair? providing for his family? Knowing how he felt after the diagnosis led him to become an advocate for this disease. He started Must Stop MS! on Facebook to provide support, new information regarding MS, and to raise awareness of the disease. Must Stop MS! quickly spread to Twitter and Instagram. He started a weekly Twitter chat named #ChatMS that occurs every Monday at 7pm EST. His mission is to bring the MS community together to help raise awareness, support each other, and provide hope. Randy won’t stop until “we get that cure we all need.”
Enrique Alvarez MD PhD is an Assistant Professor of Neurology at the University of Colorado School of Medicine and cares for patients multiple sclerosis patients at the Rocky Mountain MS Center. He was a graduate of the Medical Scientist Training program at the University of Colorado Denver and completed his neurology residency and neuroimmunology fellowship at Washington University in St. Louis. He has a special interest in using biomarkers to customize treatments and patient care
Sexual health is an important part of quality of life for many people. Multiple sclerosis can cause new challenges and disrupt sexual relationships. Positioning options, including pillows and slings, are reviewed that can help overcome weakness and stiffness of legs. Factors that can be reduce a woman’s libido, or sexual drive, are addressed such as medications and hormone levels. Ways to achieve a satisfying sexual relationship with disability from multiple sclerosis are discussed in terms of intimacy and foreplay. Detailed solutions are presented such as stimulation and lubrication to overcome decreased or painful sensations with intercourse.
Up to 40% of men with multiple sclerosis can have low testosterone which can decrease libido. An array of testosterone replacement options highlighted depending on whether a man still wants to father children or not. Erectile dysfunction treatments discussed in depth including oral pills, intra-urethral suppositories, self-injection therapies, vacuum erection devices and penile implants.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Heather Raznick MSW, LCSW is a psychotherapist in clinical practice in St. Louis. She obtained a Masters in Social Work from Washington University. She trained at the world-renowned Masters and Johnson Institute, where she studied clinical sex therapy under the direct supervision of legendary sexologist Dr. William Masters. She provides academic and clinical training to residents and medical students as well as lectures at several area hospitals. Heather shares her expertise on sexuality and wellness with community groups and organizations. She also frequently appears on radio interviews and television programs as a guest expert. She is a member and has received certifications in multiple organizations including American Association of Sex Educators, Counselors and Therapists and the International Society for the Study of Women’s Sexual Health.
Etai Goldenberg MD is the Director of Men’s Health at Urology of St. Louis. Dr. Goldenberg completed his undergraduate degree at University of Michigan and medical school at Wayne State University School of Medicine in Detroit. His urological surgery residency was obtained at Washington University in St. Louis. In addition, he completed a fellowship in male reproduction and sexual health at the Smith Institute for Urology in New York City. He specializes in male sexual health, male reproduction, microsurgery, prosthetic urology and testosterone replacement.
Trouble with your bladder? Most people with multiple sclerosis have bladder issues. Penelope shares her personal bladder challenges with urgency, trouble emptying her bladder and use of catheters. Rather than being embarrassed, Penelope gives advice on when to speak up to get needed medical care and how to cope (laughter helps). Dr. Travis Bullock then explains what happens to the bladder in MS. Treatment strategies for bladder urgency reviewed including pelvic exercises, medications and Botox injections. Options for trouble emptying bladder highlighted including self-catherization and suprapubic catheters. Ways to reduce frequent urinary tract infections (UTIs) discussed including methenamine, d-mannose and cranberry tablets.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Penelope is the author and founder of Positive Living with MS where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey.
Travis Bullock MD is a urologist with expertise in multiple sclerosis at Urology of St. Louis. He completed his urologic surgery residency at Washington University School of Medicine in St. Louis and fellowship in Female Urology, Neuro-urology and Pelvic Floor Reconstruction at the Center for Continence Care and Female Urology at Metropolitan Urologic Specialists in Minneapolis, Minnesota.
This podcast explores cognitive issues in multiple sclerosis. Caroline Craven aka The Girl With MS shares the impact of MS on her short-term memory, word-finding ability and multitasking skills. She talks about the role of stress, sleep and mood have on her cognition. Caroline reviews how she copes with these changes partially through diet, exercise and good sleep. Abbey Hughes PhD, a rehabilitation psychologist from John Hopkins, outlines ways to deal with memory and multitasking obstacles for those living with MS. Strategies to help cognitive functioning are shared including task completion tips, journal use, brain empowering apps, speech therapy, stress reduction and depression control. Screening tools to check for cognitive problems such as brain processing speed reviewed. MS brain changes and key ways to maintain brain health and better cognition emphasized.
Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.
Abbey Hughes PhD is a clinical psychologist with expertise in rehabilitation psychology and multiple sclerosis rehabilitation. She is an Assistant Professor of Physical Medicine and Rehabilitation at John Hopkins. Her clinical and research interests include the assessment, treatment and management of psychological and cognitive difficulties associated with multiple sclerosis including adjustment to disability, sleep disturbance, fatigue, depression, anxiety, and problems with thinking or memory.
Multiple sclerosis causes anxiety for many people living with the condition. With the COVID-19 pandemic, added anxiety comes from people with MS or their family members being furloughed or terminated from employment. How am I going to stay on my medications or afford them? Will I still be able to see my doctor if I lose my health insurance? How can I pay for an MRI scan?
In United States, the disease-modifying medications are generally free for those patients without insurance or underinsured if not on government insurance (Medicare or Medicaid). Your healthcare provider simply needs to submit a prescription (called a service request form or SRF) to the pharmaceutical company that makes the MS medication to access the financial assistance. These programs have no co-pay if you qualify and apply to people already on a specific disease-modifying MS medication or starting a new medication.
For those people on Medicare, independent charitable patient assistance programs can help with co-pay assistance since the U.S. government does not allow the pharmaceutical companies to provide medications with no co-pay. The pharmaceutical company that makes your medication can help you figure out which patient assistance programs to apply for co-pay assistance. If your income is too high, you may not qualify for patient assistance with Medicare (which tends to occur when retirement income is too high or the person with MS is on Social Security Disability while their spouse working).
To cover medications, doctor visits and medications, Medicaid might be an option if you financially qualify depending on your own state’s requirements. Most large healthcare organizations offer charitable care for those in need which generally requires an application to coverage/assistance for doctor appointments, medication infusion costs and MRI scans.
The best resource for MRI scans is the MSAA MRI Access Fund. There’s an online application for free MRI scans of the brain and cervical spinal cord for people with multiple sclerosis or in the process of trying to diagnose MS. The MSAA can also help with MRI scan costs of completed scans. The MSAA MRI Access Fund is supported by Biogen and Sanofi Genzyme. MSAA also has durable medical equipment assistance for items from cooling vests to wheelchairs.
A great resource for medication cost savings for medications is GoodRx. After entering the medication name and your ZIP code, a list of pharmacies and price at each pharmacy is listed plus coupons are generated. GoodRx can save hundreds of dollars on a single medication in one month.
Never assume you don’t have options. Please reach out to your healthcare team who are committed to keeping you on track for your MS care!
Telemedicine is use of electronic technology to allow exchange of health information between locations. The use of telemedicine has rapidly become the standard for patient visits with their neurologists since March 2020. To reduce the risk of COVID-19 exposure by going to a doctor’s office, remote appointments have become routine with use of phones, tablets and computers. Dr. Krieger from New York City and Dr. Okai from Dallas discuss their early insights to advantages and disadvantages of the new virtual appointments for their patients with multiple sclerosis. Tips to navigate the technology and improve your virtual visit shared. These MS experts share their advice on whether you should have a virtual appointment now or wait for an in-office appointment. The neurologists also speculate on the future of telemedicine.
Barry Singer MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center, interviews:
Annette Okai, MD is a MS specialist and Medical Director of the Baylor Scott & White Multiple Sclerosis Treatment Center in Dallas, Texas. She completed her residency in Neurology in 2006 and fellowship in Neuroimmunology in 2008. Dr. Okai interests include studying multiple sclerosis in diverse populations and the utilization of conventional and novel MRI techniques in multiple sclerosis.
Stephen Krieger, MD is a MS specialist at the Corrinne Goldsmith Dickinson Center for MS at Mount Sinai in New York. He is an Associate Professor of Neurology at the Icahn School of Medicine at Mount Sinai and Director of the Neurology Residency Training Program. He created a topographical model to better understand MS disease course that has been adopted globally.
At the height of the COVID-19 pandemic, neurologists from major multiple sclerosis centers from Barcelona, Spain and Rome, Italy share their experiences on the front lines. Spain and Italy had the highest rates of COVID-19 infections until surpassed by the United States. These MS specialists share how they are supporting and advising patients during this crisis. Virtual appointments and changes to MS treatment reviewed. The neurologists share what happened to people with MS that were infected with this coronavirus in Italy and Spain.
Barry Singer MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center interviews:
Giovanna Borriello, MD, MS Neurologist working at the MS Center in the academic Hospital Sant’ Andrea in Rome, Italy since 2001. She had been an investigator over 40 clinical trials on multiple sclerosis including trials focused on new treatments. In 2011, she founded a non-profit organization, called “Semper Mobilis” Onlus, for people living with MS, to give them reliable and updated information, to assist their caregivers with psychological and nursing support in the management of the disease and to offer best practices to healthcare professionals in the multidisciplinary setting with specific courses and update activities.
Jaume Sastre-Garriga MD, PhD is the Deputy director of Cemcat, The MS Center of Catalonia in Barcelona, Spain. Dr. Jaume Sastre-Garriga received his MD at the University of Barcelona and his PhD at the Universitat Autònoma de Barcelona. He trained as a neurologist at the Neurology Department, Vall d’Hebron University Hospital. He serves on the executive board of RIMS (Rehabilitation in Multiple Sclerosis) and the steering committee for MAGNIMS, the European networks for best practice and research in MS rehabilitation and MS MRI imaging, respectively. Dr. Sastre-Garriga has published over 100 scientific articles in the past decade and serves on the Editorial Board of the Multiple Sclerosis Journal.
Feb 29 2020 Living with MS in Coronavirus COVID-19 Pandemic
MS Living Well values educating people living with MS globally since 2007. In this developing coronavirus pandemic, the goal is provide information specific to those living with MS to help determine your risks and ways to protect yourself. For more info see the CDC’s website on COVID-19.
EVALUATE YOUR RISK:
A. LOCATION: plays a major factor. Higher risk countries are changing: now Europe, United States and Iran have the most new cases (updated March 19, 1920). The situation is changing rapidly so important to be aware of local evolving risk. Many people may be carriers of the virus without symptoms. People can become infected if within 6 feet of someone infected with the coronavirus who coughs or sneezes or by touching surfaces infected and then touching your face, nose or possibly your eyes.
B. IMMUNE STATUS: Many multiple sclerosis medications could put a person at increased risk of serious complications from coronavirus infection including pneumonia or even death. All FDA-approved medications to change the disease course of multiple sclerosis impact the immune system. As a consequence, your ability to fight the viral infection may not be as robust. Many MS medications have been studied to make sure that people can still mount an immune response to new virus while the medication is being taken.
Ocrevus, Gilenya and Mayzent have been associated with an increased risk of respiratory infections in clinical trials and might make MS patients on these medications at increased risk of coronavirus complications. Lemtrada and Mavenclad could also potentially put people with MS at higher risk of serious complications during the year after the last treatment course. Whether Tecfidera, Vumerity or Tysabri treatment would impact susceptibility to coronavirus complications is unclear. Teriflunomide is likely low risk for increased complications. Copaxone and interferons (Avonex, Betaseron, Extavia, Plegridy and Rebif) are likely quite safe as well. NEVER STOP YOUR MS MEDICATION ON YOUR OWN SINCE COULD LEAD TO PERMANENT SEVERE DISABILITY. ALWAYS CONSULT WITH YOUR HEALTHCARE PROVIDERS BEFORE MAKING TREATMENT DECISIONS.
C. AGE and DISABILITY: Elderly patients are at greater risk of death. Overall, the risk of death is estimated at 2-3% of infected COVID-19 patients. People with MS with higher levels of disability such as with moderate to severe weakness in arms and legs may be more vulnerable to coronavirus complications.
A. Avoid close contact with people who are sick.
B. Avoid touching your eyes, nose, and mouth.
C. Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
D. Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe. The virus can linger for a few days on plastic and steel.
E. Facemasks are not recommended by the CDC for people that are healthy. N95 masks are effective but generally reserved for healthcare works treating sick coronavirus patients.
F. Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
G. Stock up on supplies at home if you are at higher risk for complications. As infection rates soar, you will be prepared to avoid public places for shopping.
H. Would avoid travel including airplane flights and cruises. Avoid attending group gatherings such as meetings, religious events and sporting events in higher risk areas.
I. Notify your healthcare providers immediately if having fever, cough or shortness of breath.
Multiple sclerosis experts share invaluable information regarding pregnancy and multiple sclerosis. The podcast covers pregnancy planning for a healthy baby while minimizing risk of multiple sclerosis disease activity. Topics of unplanned pregnancies, birth control and role of high-risk obstetricians addressed. Infertility and the role of in vitro fertilization in woman with MS covered. Genetic risks to children and pros and cons of nursing addressed. Information for men who want to father children reviewed.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Claire Riley, MD is the Director of the Multiple Sclerosis Center at Columbia University Irving Medical Center since January 2012 and an Assistant Professor of Neurology. She earned an undergraduate degree from Dartmouth College and a medical degree from Vagelos College of Physicians and Surgeons (VP&S) at Columbia University. She completed her residency in neurology and 2-year clinical fellowship in multiple sclerosis at Columbia University Irving Medical Center. She was previously an attending neurologist and assistant professor in the Yale MS Center in New Haven, CT. Dr. Riley regularly teaches medical students, residents and fellows in the MS clinic. She is also an investigator in clinical trials related to multiple sclerosis.
Amy Perrin Ross, APN, MSN, CNRN, MSCN is a board certified neuroscience nurse and the Neuroscience Program coordinator at Loyola University Medical Center in Maywood, IL. She obtained her BSN and MSN from Loyola University Marcella Niehoff School of Nursing, Chicago, IL. As an advanced practice nurse, she coordinates the multiple sclerosis clinic at Loyola University Medical Center in Maywood, Illinois. In her role at Loyola, she has coordinated multiple clinical research trials in multiple sclerosis. She is a Past President of the International Organization of Multiple Sclerosis Nurses. She has authored numerous articles and book chapters on multiple sclerosis. In addition, she has served as a clinical nurse consultant with the National Multiple Sclerosis Society, a member of the Health Care Advisory Council for the Multiple Sclerosis Association of America, and a board member of the Consortium of Multiple Sclerosis Centers. She has been an invited speaker at national and international meetings and conferences and has been very active in neuroscience clinical research for over 20 years.
Oct 30 2019 Vumerity: New Oral MS Medication FDA-approved
Vumerity is a twice a day oral medication for patients with multiple sclerosis. The active ingredient of Vumerity is diroximel fumarate, which is rapidly converted to monomethyl fumarate in the body. Similarly dimethyl fumarate (Tecfidera) is also converted to monomethyl fumarate. Therefore, Vumerity would be expected to the same benefits as Tecfidera on multiple sclerosis such as 53% reduction of relapses, 38% reduction in likelihood of disability progression and 90% reduction on active contrast MRI lesions (DEFINE trial).
Full results of the EVOLVE-MS trials are pending including the EVOLVE-MS-1 study, a Phase 3, open-label, two-year safety study and the EVOLVE-MS-2 study, a Phase 3, five-week randomized, prospective, double-blind, multi-center study that assessed the gastrointestinal (GI) tolerability of VUMERITY and TECFIDERA using self-administered GI questionnaires. Based on preliminary results of EVOLVE-MS-1 study that I presented at ECTRIMS in September 2019, approximately 30% of Vumerity had gastrointestinal side effect but less than 1% discontinue due to this side effect. Lymphocyte (type of white blood cell) monitor is important to reduce potential risk of PML, a brain viral infection. Thanks to all of our patients who participated in the clinical trials.