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 Your Doctor Order a DEXA Scan?
What is a DEXA Scan? (VeryWell Health) Because so many of us take prednisone for our MG, we are at significantly higher risk of developing osteopenia or, more seriously, osteoporosis (NIH), which could then increase your risk of bone fractures, a potentially serious if not deadly condition particularly in the elderly.
Good neurologists (or other good doctors treating your MG) will likely order a DEXA Scan, which measures bone density, if you've been on prednisone for a while. Whether or not it shows osteoporosis, they may order a scan every year or two, to monitor your bone density.
I've taken prednisone for over a year, so my neurologist recently ordered my first DEXA Scan, and it showed that I, too, was in the early stage of osteoporosis.
So, 5 weeks ago I started on Fosamax (WebMD) to treat the condition. Then 3 weeks ago I fractured a rib, the first broken bone I've ever had!
Hip fractures (Mayo Clinic) are not uncommon with osteoporosis, especially in the elderly. They are one of the deadliest types of fractures, where the one-year mortality rate for elderly patients is more than 20% (Ortho Bethesda).
If you consider yourself at risk for osteoporosis then maybe think about discussing this with your doctor, if he or she hasn't already taken the initiative in your case. Check out the links above and consider learning all you can about this subject.
Mike Stabile
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.
Dating and Relationships With Myasthenia Gravis (WebMD) Overcoming the unique challenges of making relationships while having a rare disease.
Myasthenia Gravis Effects on Speaking and Swallowing (Myasthenia-gravis.com)
Take Control of Your Myasthenia Gravis Symptoms - Three excellent videos about the latest treatment options including precision dosing.
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)
WebMD has a series of very well-made, short videos about various aspects of MG. These videos are a good introduction to MG for newly-diagnosed MGers. Click HERE to watch the first video and then it will automatically cycle through the subsequent ones.
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)
** Sent in by a group member:
Antibodies in Myasthenia Gravis: A Key to Personalized Care - "Knowing which specific antibodies are present in a patient allows for more tailored therapeutic strategies." (RareDiseaseAdvisor)
Beyond “Doctor Knows Best” – Valuing Patient Views in Diagnostics - A critical problem experienced by so many MG patients. (SciTechDaily)
Misinformation is Rampant on Social Media - Here are two articles from The Conversation on this dangerous situation.
Here’s what medical misinformation does, why it spreads and what people can do about it.
A social psychologist explains the tactics used against you.
Identifying Appropriate Experts (NIH) How to identify an appropriate scientific or medical expert or resource on issues related to health, wellness, or biomedical research in general
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.
Symptoms of Immune System Problems (WebMD) - MG is an autoimmune disease and it is not uncommon for us to have comorbidities that also involve the immune system.
Myasthenia Gravis May Be Linked to Other Autoimmune Disorders Like MS and NMOSD (RareDiseaseAdvisor)
If you have myasthenia gravis then there's a good chance you suffer from PALATAL PROLAPSE. (Muscle and Nerve)
How to Beat Myasthenia Gravis Triggers - Excellent review of common MG triggers (of flare-ups) by Bob Averack (WebMD).
Is There Such A Thing As Bulbar Myasthenia Gravis? Not formally, but it's an often-used term.
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)
From Pharma Features:
"Diagnostic errors are another type of iatrogenic disorder that can have serious consequences. A missed or incorrect diagnosis can delay necessary treatment or result in inappropriate treatment, leading to complications or worsening of the condition."
The diagnosis of Myasthenia Gravis can take weeks, months, even years. This makes us particularly susceptible to iatrogenic disorders. This article describes "the nature of iatrogenic disorders, their prevalence, and strategies to prevent them."
Did you know that dogs (and even cats) can get Myasthenia Gravis? Neither did we! Check out this video from Southeast Veterinary Neurology.
** Sent in by a group member:
The American Association of Neuromuscular & Electrodiagnostic Medicine Annual Meeting has released dozens of videos of their presentations. Many of them are specific for myasthenia gravis (just review the titles and descriptions to find them). No registration is necessary.
** 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.
BRAIN FOG - Although myasthenia gravis doesn't directly affect the brain, you can still get brain fog from the indirect and secondary effects of MG.
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.
Some YouTube videos about MG, by doctors, that you might have missed
Myasthenia Gravis (MG) : causes, symptoms, diagnosis & treatment options
Identifying Myasthenia Gravis and Assessing Patients’ Treatment Response to Improve Outcomes
Understanding Myasthenia Gravis: Diagnosis and Treatment Options
Advances in the Treatment of Myasthenia Gravis (this one is particularly well-done)
Myasthenia Gravis (Free NCLEX Review) (made for RNs, but lots of info)
Myasthenia Gravis | Pathophysiology, Clinical Features, Diagnosis & Treatment
Myasthenia Gravis | MG | Pathophysiology | Causes | Triggers | Medical Management
Novel Myasthenia Gravis Therapies Bring Opportunities, Challenges - MedScape article just released.
Can Ocular MG progress to general MG (gMG)? Yes, but it depends.
Sometimes when your health insurance changes, it means having to find another (Neuromuscular) Neurologist on the new health plan. This is one MG patient's story of having to replace her Neurologist, whom she otherwise liked.
Chronic inflammation is often associated with many disorders, including myasthenia gravis. Here are articles discussing this condition:
How to recognize and how to treat chronic inflammation. (Verywell Health)
Causes of inflammation (Verywell Health)
The Anti-Inflammatory Diet (Healthline) Consuming certain foods and drinks while avoiding others may help you reduce and prevent inflammation.
The Signs of Different Types of Inflammation. (Verywell Health)
WebMD has a series of videos and articles specific for myasthenia gravis. One video features Alexis Rodriguez, the Atlanta, Georgia, Support Group Leader.
Those with more severe forms of myasthenia gravis often rely on the help provided by caregivers. Although this article is directed towards caregivers of dementia patients, most of the tips and suggestions are also helpful and applicable to those who care for MGers. Check it out.
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.
When Is COVID Most Contagious? Important for MG patients to know. (VeryWell Health)
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.
Novel myasthenia gravis therapies bring opportunities, challenges - Includes a historical review of MG treatments.
Hospitalizations and Mortality From Myasthenia Gravis (PubMed summary of original article)
Planning Financially for MG (WebMD)
You might be able to save some money by buying your generic prescription drugs through GoodRX or Amazon. Check out this article for the details. Additional info on pharmacy Rx discounts here.
MISTAKES CAREGIVERS MAKE AND HOW TO AVOID THEM - from MGFA
My Daily Life With Myasthenia Gravis (WebMD) One MGer's revealing story.
If you have a particular interest in wearable medical devices and patient medical phone apps and want to know what the future holds, especially for us MGers, I recommend this article, Wearable Digital Health Technology (DHT) from NEJM. It is the first in a series of articles about DHT that will be published in NEJM going forward. You can also subscribe and sign up for alerts and updates (including this series) from NEJM, on the webpage, if you want (it's free).
Patient vigilance can help to avoid or detect medical error One MG patient's story.
Excessive heat and humidity are rapidly becoming the norms during summers. These can be deadly for older people and for MGers. Check out this comprehensive article from the NIH for advice on how to reduce your risks of getting heat-related illnesses (and the resulting MG flare-ups).
Check out he MGFA Community Blog page, which has lots of useful information such as Living with MG Stories and Hot MG Developments.
Is My Myasthenia Gravis Treatment Working? (WebMD) Content: Treatment Goals; How Do I Know My Myasthenia Treatment Is Working?; When Should I Call My Doctor About My Myasthenia Gravis?
Zilbrysq for AChR-positive gMG now commercially available in US (Myasthenia Gravis News)
Famous People Diagnosed with MYASTHENIA GRAVIS (Livingwithmyastheniagravis.org)
A Holiday Poem from Our Group Leader
In the MG support group, hearts unite,
Facing challenges, strong and bright.
Through the struggles, together we stand,
A caring community, hand in hand.
In this season of joy, let's share,
A Christmas poem for all to bear.
May laughter echo, spirits lift,
As we navigate this unique gift.
For each member, brave and true,
Wishing you joy in all you pursue.
May the holiday's warmth embrace,
Filling your hearts with love and grace.
In the MG family, bonds run deep,
A treasure trove of friendships to keep.
So here's to you, with love so grand,
Merry Christmas to our MG clan!
With warmest regards,
Connie