🔥 What Happens to the Body After Sitting Down for Too Long? (Verywellhealth)

From the article summary: "Sitting down for too long and maintaining a sedentary lifestyle can have many harmful effects on the body. These include muscle tightness, joint stiffness, pain, circulation issues, slowed cognition and metabolism, and increased risk of hypertension, diabetes, blood clots, heart disease, musculoskeletal disorders, and cancer."

MGers who experience muscle weakness in their legs as one of their MG symptoms likely spend significantly more time sitting during the day than do most people. This article includes a section on "Easy Stretches to Counteract Sitting All Day".   Mike Stabile

When You Don’t Want Advice on Your Rare Disease (raredisease.net)

Late-Onset Autoimmune Myasthenia Gravis: A Diagnosis Not to Be Overlooked in the Elderly (Cureus)

Juvenile myasthenia gravis may be more common than believed (Myasthenia gravis News)

Myasthenia gravis treatments: what’s on the horizon? (Labiotech)

Free, downloadable PDF book: Stress, Anxiety, and Sleep Problems: Considering Complementary Approaches (eBook) (NIH)  "Stress, anxiety, and sleep problems are common, and dealing with them can be challenging. This 42-page eBook discusses complementary health approaches that have been studied for stress, anxiety, or sleep disorders, including relaxation techniques, meditation and mindfulness, music-based interventions, yoga, melatonin, herbal supplements, and more. You’ll find summaries of what the science says about whether these approaches are useful and safe, as well as information on how long-term stress, anxiety, or sleep problems can affect your mental and physical health. Published May 2025"

Healthy Ways to Overcome Caregiver Burnout (Brain&Life)  If you care for an MGer, this could be very useful information.

What Patients Don’t Say and Physicians Don’t Ask: A Needs Assessment in Myasthenia Gravis... (Springer) Georgia MG Support Group Leader Alexis Rodriguez contributed to this article that examines the need for improved communication between MG patient and doctor.

Vaccinations and Myasthenia Gravis: Current Recommendations (myasthenia-gravis.com)

Advanced Imaging Reveals Mechanisms That Cause Autoimmune Disease (UC San Diego Today)

See examples (from Medscape) of what information is available for doctors who treat MG patients:

• Myasthenia Gravis Treatment Strategies: 5 Things to Know

• Practice Essentials

• Emergent Management of Myasthenia Gravis

• Comorbidities in Myasthenia Gravis

Do you think you know a lot about MG? Take this short 5-question quiz and find out.

Anxiety is linked to gut health (Medical News Today)

Investigating the Prevalence and Role of Depression in Patients With Myasthenia Gravis (Rare Disease Advisor)

Navigating Unwanted Advice (RareDisease.net) Possibly the most common problem in our MG community

What Happens to Your Body When Your Electrolytes Are Low (Verywell Health) Before blaming your MG or your MG meds on a new symptom or side effect, consider your electrolyte balance.

Healthy Looks Great on You Vickie Petz Kasper, M.D., board-certified in obstetrics/gynecology and lifestyle medicine, applies the healing principles of lifestyle medicine to the conditions you care about.

We MGers must be careful when reading any MG article written by a non-professional. I just read a recent article that was not-well-written, and that you might come across:  Is My Myasthenia Gravis Treatment Working? (WebMD)

Several errors I found:

• "Medicines such as anticholinesterase drugs, steroids, or drugs that curb your immune system"  Steroids ARE drugs that curb your immune system. It implies otherwise.

• "Too much activity or stress and not enough sleep can trigger the muscle weakness of myasthenia gravis. Heat and humidity may affect you, too."   There are so many other important triggers they fail to mention, such as certain drugs, chemicals, foods, over-exertion, emotional stress...  "Certain chemicals..." are mentioned as possibly treatment-limiting, but no mention of them as MG triggers (which they commonly are).

• Chronic fatigue, one of the more pernicious symptoms of MG, is only mentioned once, and it's incorrectly listed as one of the symptoms that "come on suddenly", i.e. ACUTE, NOT chronic.

• The article's sources are few (3), not detailed, and not referenced (footnoted) anywhere in the text. For example, there should be a link to an MG-ADL chart.

• It mentions that the MG-ADL should be scored twice a year. That makes no sense if you have a disease where everyone has different degrees of various symptoms that commonly change daily.

The fact that this article was "Medically Reviewed" by an MD was surprising. It too briefly covers the complex subject of myasthenia gravis, and in a way that raises more questions than answers.

by Mike Stabile

Take this quick quiz to check your knowledge and see how well you understand the fundamentals of MG, including its causes, symptoms, diagnosis, and triggers. Whether you’re just starting to learn about MG or want a refresher, this quiz is an excellent way to expand your understanding and stay informed.

Steering Away From Steroids in Myasthenia Gravis Management: The Role of FcRn Inhibitors in the Current Treatment Paradigm (PeerView Video) Moving from Steroids to FcRn inhibitors in MG treatment (Must complete short multiple choice test first - answers don't matter)

What’s the most effective way to prevent shingles? Getting vaccinated (NIH) "Shingles, also known as herpes zoster, is a painful, often debilitating rash that affects roughly 1 million people each year... About 1 in 3 people in the United States will develop shingles in their lifetime, usually after age 50. Although shingles can affect younger adults and even children, it is most common in older adults. People with weakened immune systems are also at greater risk." 

I recently acquired Shingles. I have MG, I am in my 70s, and I am on Prednisone. All three of these factors likely allowed the varicella virus to be released from its dormant stage in my body. It was the most chronically painful condition I've ever experienced. Eight months later, I'm still experiencing shingles-induced chronic pruritis, requiring daily skin treatment.  (Mike Stabile)

Some nice, short review articles about gMG:

What Are the Symptoms of Myasthenia Gravis? (myasthenia-gravis.com)

Managing Myasthenia Gravis Flares (myasthenia-gravis.com) Summary about MG flares and triggers.

What Causes Remission in Myasthenia Gravis? (myasthenia-gravis.com)

Bladder Problems and Myasthenia Gravis (myasthenia-gravis.com) Summary about bladder control issues caused by MG and Mestinon (pyridostigmine).

What Is the Connection Between Pain and Myasthenia Gravis? (myasthenia-gravis.com)

Behind the Mystery of Generalized Myasthenia Gravis (gMG) (Lifetime) Although this TV episode of The Balancing Act is primarily a long infomercial for Alexion's Ultomiris gMG drug, it does have some good info for new MG patients.

Symptoms of gMG controlled after switch from azathioprine to MMF (Myasthenia Gravis News) MGers currently taking Azathioprine might want to be aware of this new study.

MGNet Research Webinar Series: Atypical B Cells in Myasthenia Gravis (YouTube) An MG researcher explains the importance of B-cells in MG.

Myasthenia Gravis: When Muscles Go Weak! (Score Booster Academy) This is a great, short YouTube video to show your friends and family to help them understand your MG.

These Common Medications May Cause More Side Effects When It’s Hot Out (Verywell Health) We MGers tend to take lots of meds. Considering the current and upcoming hot weather, you might want to check this out.

Great YouTube video by Myasthenia Gravis Association about the benefits of therapeutic plasma exchange for myasthenia gravis, a common treatment for MG.

Myasthenia gravis: Dealing with Heat and Hot Weather (myasthenia-gravis.com) As another very hot summer rolls in this year, we MGers must be so careful about excessive heat (and humidity) which can amplify our MG symptoms. Also see: What Extreme Heat Does to Your Brain (Verywell Health) and How does heat kill? (AP)

Does Surgical Removal of the Thymus Have Deleterious Consequences? (Neurology) Terrific, detailed article about the structure and function of the Thymus gland. Also analysis of thymomas and their surgical removal. Most important (for MG) is what are the suspected reasons how and why the thymus manufactures the antibodies to the Acetylcholine receptors (Anti-AChR antibodies).

How to Evaluate Trustworthiness in Science (NIH) If you get (or want to get) your information from scientific articles and journals, like I do for MG information for this website, this might be something well worth reading. It explains how to read these sources of information.

Argenx, maker of Vyvgart and Vyvgart Hytrulo, had a short segment on the TV show Good Morning America where they show three items (very tasty-looking) that are easy for MGers to prepare.

Disability Resources Center - Incorporated in 1976, the Disabled Resources Center guided by the vision and dedication of the founders, the services offered by DRC evolved from giving information and referrals, to providing eighteen services to thousands of people each year in the cities of Artesia, Avalon, Cypress, Hawaiian Gardens, Lakewood, La Palma, Long Beach, Seal Beach, and Signal Hill plus 52 ZIP Codes in Los Angeles County and Orange County, California.  

This reviewer on TikTok, who is a genetic counselor, correctly identifies several misconceptions about myasthenia gravis mentioned in the new movie, Madame Web. It's unfortunate, given the scarcity of knowledge about this disease in our public discourse, that movie viewers will learn such inaccurate information. Let's hope that more people will see the review than will see the movie.

Liver Tox (NIH) From the site: "LiverTox® provides up-to-date, unbiased and easily accessed information on the diagnosis, cause, frequency, clinical patterns and management of liver injury attributable to prescription and nonprescription medications and selected herbal and dietary supplements." Want to find out if any of your meds or supplements might be toxic? This is the place to start looking. It includes a toxicity risk rating for each.

White Coat Syndrome and High Blood Pressure (HBP): What to Know (VeryWell Health) 

I have this syndrome. It's probably related to my anxiety disorder. In the past my doctors always put me on prescription blood pressure drugs (for many years) and so I suffered the side effects of that. A few years ago I heard about this syndrome and bought a home blood pressure monitor. A few days before a scheduled clinic visit where I knew they'd be checking, I recorded my blood pressure for at least four consecutive days (at least 3-4 measurements each time) and brought the results to my clinic visit. And of course results of my measurements came out normal. They put those in my chart rather than measuring there. I had also insisted that my PCP stop prescribing the prescription. I was so glad to see this article and hope that it will help some of you, too. (Mike Stabile)

Clinical features of myasthenia gravis with neurological and systemic autoimmune diseases (NIH) The co-existence of myasthenia gravis and other autoimmune diseases

Medical Criteria Needed to Qualify with Myasthenia Gravis for SSA/SSDI (disability-benefits-help.org)

Evidence-Based Management of Generalized Myasthenia Gravis: Current Practices and Emerging Treatment Paradigms (Prime)  A 1-hour presentation created for neurologists, nurses, and pharmacists caring for patients with gMG. MGers might also find it very informative and helpful in understanding current treatment options for MG. There are several survey questions you'll need to answer first (takes less than a minute) before getting to the presentation; don't worry about not knowing the correct answers, just do your best and make sure you leave an answer (right or wrong) for each.

Offering Hope for Myasthenia Gravis  (Web MD/Perspectives) Chock full of MG articles and videos

How To Make Sense of a Scientific Journal Article (NIH) For a better understanding of the research papers on MG that you might come across.

Did you know that under programs set up by the Affordable Care Act, the federal government cuts payments to hospitals that have high rates of readmissions and those with the highest numbers of infections and patient injuries?  Kaiser Family Foundation (KFF) has a look-up tool (using KFF Health News' analysis of hospital data from the Centers for Medicare & Medicaid Services) where you can determine a hospital's rating over the past 8 years. Most U.S. hospitals are included.

INFLAMMATION is an important component in the care of MG. Here are some helpful articles:

• Will a better understanding of the role of INFLAMMATION lead to the development of better therapies or combination of therapies that target both the autoantibody and inflammatory components of MG? (Frontiers in Immunology)

• What Is Inflammation, Anyway?  (Better Report)

• 11 Chronic Inflammation Symptoms  (Verywell Health)

• The Signs of Different Types of Inflammation (Verywell Health)

Interesting web page from GARD (Genetic and Rare Diseases Information Center) showing the frequency of each MG symptom in the MG population.  (scroll down a bit)

Beyond “Doctor Knows Best” – Valuing Patient Views in Diagnostics - A critical problem experienced by so many MG patients. (SciTechDaily)

GASLIGHTING - Unfortunately, due to the lack of familiarity of myasthenia gravis in the general and medical population, we often hear from MG patients about how they are ignored and manipulated by their caregivers (e.g., doctors, family, friends, etc.), resulting in inadequate treatment. This behavior by others, of challenging what you know is true and making you question your beliefs and sanity, is commonly called "gaslighting".  This article from WebMD describes what gaslighting is and how you can possibly deal with it.

Myasthenia Gravis May Be Linked to Other Autoimmune Disorders Like MS and NMOSD (RareDiseaseAdvisor)

Why is Myasthenia Gravis called the Snowflake Disease (YouTube) This is a basic-level explanation of MG. You might find it useful when you're trying to explain MG to a friend or family member. (On a side note, the computer-generated narration is a little distracting but quite humorous!) This YouTube channel, The Dailey Advocate, by Jennifer Dailey, has some good and very basic explanations of various aspects of MG.  Mike Stabile

• IVIgs, immunosuppressants add up to higher MG healthcare costs in US (also: original article in Muscle and Nerve)

• Health Care Costs Higher First Year After Myasthenia Gravis Diagnosis (Ophthalmology Advisor)

Did you know that dogs and cats can get Myasthenia Gravis?

** Sent in by a group member:

From MedScape.org.:  Hot Topics in Neuromuscular Disorders: A Spotlight on Myasthenia Gravis  This is a series of 4 instructional videos intended for neurologists, primary care physicians, nurses, nurse practitioners, and physician assistants involved in the care of patients with generalized myasthenia gravis.  The goal of this activity is that learners will be better able to diagnose, monitor ongoing disease activity, and optimize treatment approaches based on newly available data.  Subjects covered:

• Diagnosis of MG

• Clinical tools that can be used to assess ongoing disease activity in patients with MG

• Pivotal clinical trial data for therapies studied for the management of MG

To just access these videos, scroll to the bottom and click "SAVE AND PROCEED". There's a handful of questions to answer, but you don't have to answer them.

MedScape has a wealth of information about MG.  If you don't have a MedScape account then you can register (no cost), but it's not necessary for watching just these videos.  

One of the most common unknowns I come across when talking to other MGers is how long it takes for various MG drugs and other therapies to become effective after dosing.  The time can range from minutes to months (!) depending on the drug or procedure used.  Check out this terrific article, Commonly used therapies for myasthenia gravis for a list of effective times You'll need to subscribe to the site.

Novel Myasthenia Gravis Therapies Bring Opportunities, Challenges - (MedScape )

WebMD has a series of videos and articles specific for myasthenia gravis.  One video features Alexis Rodriguez, the Atlanta, Georgia Support Group Leader.

One of the problems we MGers face, specifically with respect to using Prednisone, is weight gain.  This article from Medical News Today discusses how high fructose corn syrup (HFCS), which is added to SO MANY of the foods we eat, is a key contributor to obesity.  It gives suggestions on what foods to avoid that contain HFCS.  It also emphasizes that fresh fruit, despite what you may have heard, is not a key contributor.  If you are struggling with weight gain due to Prednisone, I recommend this article.

What Are Autoimmune Diseases?  An excellent primer on the subject.

The case of Autoimmune Diseases - The mechanisms underlying immune dysregulation and potential avenues for immune reconstitution and therapeutic intervention.

Four Causes and Risk Factors of Autoimmune Disease

Hospitalizations and Mortality From Myasthenia Gravis  (PubMed summary of original article)

 New questions about the prevalence of myasthenia gravis in the United States

MISTAKES CAREGIVERS MAKE AND HOW TO AVOID THEM - (MGFA)

Results suggest that there might be an increase in the prevalence of Alzheimer's Disease in patients previously diagnosed with MG (PubMed)

Patient vigilance can help to avoid or detect medical error  One MG patient's story.

• Zilbrysq for AChR-positive gMG now commercially available in US (Myasthenia Gravis News)