IST 605: Demyelinating Disorders

Here you will find resources for what demyelination means, and the many types of demyelinating disorders. Demyelinating disorders are synonymous with demyelinating diseases, how they are referred just depends on the author or expert.

• Bai Abacan, D. (2024, May 16). A complete guide to demyelinating disease. AmeriPharma® Specialty Care. https://ameripharmaspecialty.com/other-health-conditions/guide-to-demyelinating-disease/
  • Ameripharma Specialty Pharmacy has created a comprehensive guide to demyelinating diseases. It includes a clear explanation of what myelin is and how disorders attack the myelin sheath on the brain and spine.  This guide is written with a minimum of medical jargon for accessibility and covers a number of topics a patient or their loved one might be searching for answers for, including potential causes and a breakdown of the categories of the various demyelinating disorders and how they function on the body and brain. The guide does mention vaccines as a possible cause, but also gives the disclaimer that there is no proof or research that substantiates that potential claim.
• Aurora Health. (2025). Neuromuscular disorders & diseases: Aurora health care. Neuromuscular Disorders & Diseases | Aurora Health Care. https://www.aurorahealthcare.org/services/neuroscience/neurology/neurological-conditions/neuromuscular-disorders
• • Aurora Health Care is the third largest non-profit, integrated health system in the United States.  They created a patient-friendly page dedicated to the various demyelinating disorders, which they also refer to as “neuromuscular disorders”  Each link simply describes symptoms, treatment, diagnosis, and more. This is a useful page for an basic overview of these disorders and can be used to familiarize yourself with specific diseases.
• Clevelend Clinic. (2024, May 1). What is a demyelinating disease?. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/demyelinating-disease 
  • Cleveland Clinic offers an in-depth look into demyelinating diseases on their website. They provide an overview, as well as information on symptoms and causes, diagnosis and treatment, and prognosis in easy to read terminology.  This resource is also published in a slightly larger font with clean lines that might be more accessible to people with vision challenges due to their disorders.
• ​​​​​​​​​​​​​​Moawad, H. (2025). When the layer that protects your nerves is damaged. Verywell Health. https://www.verywellhealth.com/demyelination-4691934
  • This article by Heidi Moawad is organized clearly and provides a breakdown of what demyelination is, what may cause it, symptoms, and possible treatments.  It includes simple infographics that could be useful for folks with vision challenges due to their disorders.  It also provides a section for frequently asked questions, which might alleviate some of the stress of trying to remember all the questions one might have when receiving a diagnosis at a neurologist or healthcare professional's office.

Cleveland Clinic, 2023.

• Haws, J. (2020, May 26). How to tell if a patient has symptoms of multiple sclerosis: Demyelination: Nursing mnemonic. YouTube. https://youtu.be/P1BRt3gNyI8?si=Un9F3Pud4JqNPKxP​​​​​​​
  • ​​​​​​​(4 minutes) This brief video by Nursing.com reviews many possible symptoms of multiple sclerosis. It introduces a mnemonic device in the style of the acronym DEMYELINATION and is led by Registered Nurse Jon Haws. This acronym could be useful for anyone looking to determine whether they meet criteria for a multiple sclerosis diagnosis.
• Cleveland Clinic. (2024, May 1). What is a demyelinating disease? https://my.clevelandclinic.org/health/diseases/demyelinating-disease#symptoms-and-causes 
  • Cleveland Clinic offers the above infographic as well as a list of common symptoms found in demyelinating disorders. This list could serve as a jumping point for anyone looking to determine whether an appointment with a neurologist should be pursued.
• Brochet, B. (2015). Neuropsychiatric symptoms of inflammatory demyelinating diseases. Springer.https://link.springer.com/book/10.1007/978-3-319-18464-7 
  • This book is a comprehensive review of the neuropsychiatry of multiple sclerosis and related demyelinating diseases. Its focus is in diagnosis and disease management. It also includes objective dives into the methodological aspects and limitations of the current research on demyelinating diseases, highlighting the questions left unanswered. Because it was published in 2015, it may become obsolete as further studies are conducted and findings are found.
•  

Once one has experienced a few symptoms listed under the symptoms tab, its time to visit with your primary care physician to see if a neurology referral is recommended. This page is dedicated to the ways of diagnosing, often times beginning with MRIs of the brain and spine.

• Love, S. (2006). Demyelinating diseases. Journal of Clinical Pathology, 59(11), 1151–1159. https://doi.org/10.1136/jcp.2005.031195 
  • This journal article provides an overview of several key demyelinating conditions, including multiple sclerosis (MS), acute disseminated encephalomyelitis (ADEM), and progressive multifocal leukoencephalopathy (PML). By focusing on the radiologic characteristics of these diseases, it highlights the crucial role of MRI in diagnosis. The paper describes how different demyelinating disorders can present with overlapping symptoms but show distinct patterns on imaging. It emphasizes that early recognition and accurate differentiation of these conditions are essential for timely and effective treatment. The article is intended to help improve patient outcomes through informed diagnostic strategies.
• Mayo Foundation for Medical Education and Research. (2024, July 8). Demyelinating disease. Mayo Clinic Laboratories. https://news.mayocliniclabs.com/neurology/demyelinating-disease/
  • ​​​​​​​The Mayo Clinic has laboratories specializing in testing patients for specific types of demyelinating diseases. This website gives a comprehensive overview on the types of testing and findings one might expect from various demyelinating diseases and is useful for patients and their loved ones in knowing of options and diagnoses. Mayo Clinic Laboratories also explains that some of the symptoms might be similar across demyelinating disorders, but the most effective treatments vary per illness.  Their testing is sensitive and specific and can aid in early detection and treatment.

There are many types of treatments for the varying demyelinating disorders. Because many demyelinating disorders have crossover of symptoms, some of these treatments may be used to assist patients with similar symptoms but different diagnoses.

• Bai Abacan, D. (2024a, May 16). A complete guide to demyelinating disease - Demyelinating Disease Treatment. AmeriPharma® Specialty Care. https://ameripharmaspecialty.com/other-health-conditions/guide-to-demyelinating-disease/#Demyelinating_Disease_Treatment -
  • Ameripharma Specialty Care is a full-service online specialty pharmacy. They have created a Guide to Demyelinating Disorders that also includes a list of potential treatments for demyelinating disorders. This list includes treatment options for a variety of symptoms that may be useful for increasing knowledge prior to a visit with a neurologist. The list is not comprehensive, but could be used as a good starting point.
• Medina, R., Derias, A.-M., Lakdawala, M., Speakman, S., & Lucke-Wold, B. (2024, October 26). Overview of emerging therapies for demyelinating diseases. World journal of clinical cases. https://pmc.ncbi.nlm.nih.gov/articles/PMC11438674/ 
  • This paper titled "Overview of Emerging Therapies for Demyelinating Diseases" provides an overview of autoimmune disorders of the central nervous system, specifically those caused by demyelinating disorders. It examines and explores the latest (2024) research regarding potential therapeutic interventions, with focus on those aimed at inducing remyelination.  It also advancements in medicine and health research in relation to a number of myelin-related disorders, including multiple sclerosis, optic neuritis, neuromyelitis optica spectrum disorder, myelin oligodendrocyte glycoprotein antibody-associated disease, transverse myelitis, and acute disseminated encephalomyelitis.
• Michigan Medicine. (n.d.). Vestibular rehabilitation pencil push-ups .https://www.med.umich.edu/1libr/PMR/Vestibular/Pencil%20Pushups.pdf
  •  Not everything that treats symptoms has to be expensive and sometimes inaccessible! This simple exercise called "pencil pushups" can help strengthen the eye muscles if one is suffereing from sudden convergence insufficiency, also known as double-vision.
• Villoslada, P. Neuroprotective therapies for multiple sclerosis and other demyelinating diseases. Mult Scler Demyelinating Disord 1, 1 (2016). https://doi.org/10.1186/s40893-016-0004-0
  • This article examines therapies that can help protect the myelin, neurons, and axons. The thought is that damage to the central nervous system is caused primarily by inflammation by the immune system. These neuroprotective strategies focus on varying processes including oxidative stress, ionic imbalance (sodium, potassium or calcium), energy depletion, trophic factor support, metabolites balance, excitotoxicity, apoptosis, remyelination, etc. While these therapies are not yet approved, many have gone to clinical trial recently

A prominent concern with patients who are dealing with demyelinating disorders is that they are concerned about how the disease progresses. A question often asked is "what will happen to my body?", and furthermore "what could happen to my mind?" So many of these illnesses are progressive and limit function in mobility and cognitive abilities that there is much need for more information on how these diseases continue in one's body and what one can do to combat them or modify their lives to be more accessible despite the challenges.

• Bai Abacan, D. (2024a, May 16). A complete guide to demyelinating disease - Demyelinating Disease Treatment. AmeriPharma® Specialty Care. https://ameripharmaspecialty.com/other-health-conditions/guide-to-demyelinating-disease/#Demyelinating_Disease_Treatment AmeriPharma Specialty Care is a full-service online specialty pharmacy. They have created a Guide to Demyelinating Disorders that also includes a list of potential treatments for demyelinating disorders. This list includes treatment options for a variety of symptoms that may be useful for increasing knowledge prior to a visit with a neurologist. While this provides a fairly comprehensive list of potential treatments, new studies are always on the horizon and its best to speak to your health care specialist for their recommended treatments.
  
• ​​Bril, V. (2022). Understanding CIDP (Chronic inflammatory demyelinating polyneuropathy) with Dr Vera Bril. YouTube. https://youtu.be/sLqbf_jjoC0?si=iTlL3w6YXQH_3u9W
  • Understanding CIDP(Chronic inflammatory demyelinating polyneuropathy) with Dr Vera Bril is a video under ten minutes that explains how CIDP affects the body both short-term and long-term. Dr. Bril speaks about these symptoms and in a manner that is kind, thoughtful, and practical. She reviews these and as well as some possible treatments.
• Mercier, O., Quilichini, P. P., Magalon, K., Gil, F., Ghestem, A., Richard, F., Boudier, T., Cayre, M., & Durbec, P. (2024). Transient demyelination causes long-term cognitive impairment, myelin alteration and network synchrony defects. Glia, 72(5), 960–981. https://doi.org/10.1002/glia.24513
  •  "Transient Demyelination Causes Long-Term Cognitive Impairment, Myelin Alteration and Network Synchrony Defects is a study of long-term affects of demyelination. The study shows that remyelination is sometimes possible, but that the cognitive functionality may not function as it was prior to symptoms and diagnosis of demyelinating disease. The article is hopeful and mentions that more research is needed, with some studies already in clinical trials.
• SRNA. (2012). Cognitive Changes in Demyelinating Disease. YouTube. https://youtu.be/uf3hAOTEAnE?si=_8_kC0SSosysC_fn
  • Cognitive Changes of Demyelinating Disorders This is a film-recorded presentation from Lana Harder, PhD from the 2010 Rare Neuroimmunologic Disorders Symposium. The presentation covers how these disorders are detected, the potential functional impairments, cognitive findings, memory, emotional and behavioral outcomes, quality of life, and intervention. It’s approximately 36 minutes long and well worth the watch if you are interested in how demyelinating disorders can affect brain function.

Often times when someone is struggling with diagnosis or coming to terms with an illness, things feel very bleak. You are not alone and there are many types of supports out there.

• National MS Society. (2025). Living with MS: diet, exercise, and healthy behaviors - Vvtamins, minerals, and supplements. National Multiple Sclerosis Society. https://www.nationalmssociety.org/managing-ms/living-with-ms/diet-exercise-and-healthy-behaviors/diet-nutrition/vitamin-mineral-and-supplements 
  • This is a list of vitamins, minerals, and supplements provided by the National Multiple Sclerosis Society. While the website is specifically geared to MS, you should ask your healthcare provider if any of these supplements might be useful for you and your symptoms, as many have shown to be effective in helping cognitive function. These products are by no means cures, but many neurologists feel they can help alleviate some of the discomfort a patient may get from their various symptoms.
• Zenni Optical. (2025). Infrared, UV & Blue Light Glasses: 3-N-1 protection: Zenni Optical. https://www.zennioptical.com/eyeqlenz
  • Zenni optical provides a low-cost option for prescription and non-prescription glasses with special lenses to filter various lights in order to aid with photosensitivity.  They have FL-41 lenses at a fraction of the cost of most retailers and help filter out light that can worsen migraines and light-sensitivity. They also have blue-light blocking lenses for screen use and eye strain, as well as yellow tinted glasses that can help moderate eye fatigue.
• National Multiple Sclerosis Society. (2025). Empowering people affected by MS to live their best lives. https://www.nationalmssociety.org/
  • The National Multiple Sclerosis Society - The National MS Society offers individuals with Multiple Sclerosis (MS) and their families a wealth of resources that are available to support them in managing the disease and living a fulfilling life. These resources encompass information, both virtual and in-person support groups, financial assistance, and access to specialized care. Additionally, the National M.S. Society connects people with M.S. to M.S. Navigators, who can help individuals navigate the complexities of the disease. 

• Drevitch, G. (2020). Chronic illness and relationships. Psychology Today. https://www.psychologytoday.com/us/blog/chronically-me/202002/chronic-illness-and-relationships?msockid=3ac750dab97f67a939b345e3b85c66 

  • Psychology Today is an incredible resource for people seeking mental healthcare for a variety of options.  This article focuses on chronic illness and relationships and highlights the struggles and challenges of the caregiving partner.  It reviews social-emotional needs, practical needs like the divying up of household chores and more.  This is a great starting point for conversations between someone with a demyelinating disease and their loved one.

• Salvaggio, S. (2025). Relationships and Chronic Illness. The LiFT Collective. https://www.samanthasalvaggio.com/blog/relationships-chronic-illnes
  •  Ms. Salvaggio is an advocate for living with chronic illness. She often speaks about her relationship with her now-husband, whom she met six months after her multiple sclerosis. This is a blog post she wrote about dating while chronically ill. Ms. Salvaggio gives tips and tricks for maintaining a healthy relationship for both the person with chronic illness and the partner who loves them.

• Salvaggio, S. (2025). The LiFT Collective. https://www.samanthasalvaggio.com/blog/
  • Founder of The LiFT Collective, Samantha Salvaggio has lived with Multiple Sclerosis for nearly two decades.  Through her own journey to find health and healing in her new “normal”, she created a blog as well as social media platforms on TikTok, Instagram, and Facebook that cover diagnoses, how to prepare for doctor’s appointments, health and movement, and even maintaining healthy relationships. Ms. Salvaggio is known for not sugar-coating and telling her story and supporting others in a no-nonsense way, complete with some expletives and fun sarcasm.