Announcements Archive

(Back to Announcements)

 The role of complementary health approaches in managing pain  A downloadable PDF ebook that "provides an overview of complementary health approaches for pain, including acupuncture, massage therapy, meditation, spinal manipulation, yoga, and more. You’ll find summaries of what the science says about whether these approaches are useful and safe, as well as tips to help you be an informed consumer."  This information might be helpful for those of us, with MG and its associated pain, who are looking for relief.

Finding a Good Doctor


Navigating the Healthcare System Is Hard — These 4 Tips Make It Easier (Everyday Health)


Castle Connolly Top Doctors  (castleconnolly.com)  Just enter your zip code and specialty (e.g., Neuromuscular Neurologist) and you'll get a list of the top 7% of specialists in your area, including their locations.  You can also find the best hospitals.

Myasthenia Gravis: Creating a Plan for Your Treatment and Well-Being (WebMD) - This is a newly-released series of 4 instructional video lessons on MG. Learn more about Myasthenia Gravis (MG) and share with your friends and family.


The 4 subjects covered are:

If you want to view the slides from Dr. Muppidi's presentation at the March 9th MGSoCalGroup Zoom Meeting, click HERE. You'll also have the opportunity to download and save the slides file.

A good week for member submissions!  Here's another article, written by one of our group members, Richard Schmittdiel!!  Check out "My MG Story".

An article, written by one of our group members, Majelane Bautista-Dinh!! Check out her story, ”MG doesn’t have me”.

Wellness Series: Making The Most Of Your Doctor Appointments (click to view video) - This is a terrific, MGFA-sponsored presentation about how to get the most from, and prepare for, your next visit with your MG neurologist or other MD. Includes transcript.

Understanding Clinical Research (click to view video) is an MGA-sponsored presentation from February 26. Discussed was the important role clinical research plays in advancing care for people with MG. The interactive session answered questions – including how and why to consider participating in research efforts! The session addressed the various types of clinical research, the important role that volunteers play in the research process, benefits and risks of clinical trial participation and how to navigate the clinical trial process. Video starts around the 2:50 mark. Includes transcript.

If you're interested in Rystiggo, one of the latest FDA-approved drugs for MG, check out this excellent video presentation by Gil I. Wolfe, MD.

MGA had a great presentation by Dr. Mamatha Pasnoor, MD, FAAN, University of Kansas Health System, who addressed the pros and cons of giving vaccines to myasthenia gravis patients.  The entire presentation can be seen here on YouTube.  Includes transcript.

CDC advisory panel says people 65 and older should get a Covid spring booster shot  (Stat) - Important for us MGers on immunosuppressants.  Note that over 95% of people hospitalized for Covid this winter had not received the latest Covid booster.


Also:  CDC eases isolation guidance for Covid and other respiratory illnesses  (Stat)  Most of us MGers are immunocompromised, so this relaxation of Covid isolation guidelines might actually increase the risk of infection for us, so be careful out there!

New Section Added!!


A new section has been added to the Nutrition, Health & Living With MG page.  It's titled, Suggestions & Advice from mgsocalgroup Members, and it's a place for members to give other members any suggestions or advice that they've found helpful in dealing with their MG and that they think other members might also find helpful.  We will include your first name and last initial (e.g., "LeBron J.") unless you tell us to exclude it.  Please send your helpful suggestions/advice to mgsocalgroup@gmail.com and we'll add it.

WebMD recently released a suite of over 20 videos about myasthenia gravis.  The videos are short and professionally made, with lots of info for all of us.

The Myasthenia Gravis Foundation of America (MGFA) released their Fall/Winter 2023 online issue of FOCUS ON MG (a PDF version you can read or print out).  It's packed full of updates on new treatments and the latest MG research, spotlights on our incredible community, and information about upcoming MGFA events.  Previous issues are also available.

🎉 🎊 🎈  OUR FIRST MEMBER-SUBMITTED ARTICLE! (click)

This website's webmaster (Mike Stabile) was interviewed recently by Myasthenia-Gravis.com.  You can read the entire interview here: https://myasthenia-gravis.com/living/learning-after-diagnosis or on this website.  We hope you find it interesting and informative.

Science.org today (Dec. 7, 2023) had their sixth and final episode of the ADVOCACY IN RARE DISEASE webinar series.  If you have any interest in developments in the more global side of research, scientific application and marketing of drugs and other therapies for rare diseases (like myasthenia gravis) then I highly recommend this six-episode series of one-hour webinars.  You will need to register (no cost) with AAAS to watch these recordings.  I found today's (final) episode ("Driving Technology Advances") to be particularly informative with respect to the issues encountered in the consolidation of patient data across the rare diseases research development & application spectrum.  Everything discussed can be applied to myasthenia gravis.

BIONEWS Rare Disease Survey  "This survey explores the shared challenges and triumphs of patients across different diagnoses. Participation is open only to patients and caregivers in the United States.  Survey completers will be entered for a chance to win 1 of 10 $50 Amazon gift cards."

Are you considering Yoga for helping you cope with MG?  "This 40-page eBook provides an overview of what the science says about yoga for health, including its use by children, older adults, pregnant women, and people with health conditions. You’ll also find information on how to practice yoga safely, as well as a summary of national survey findings about the use of yoga in the United States."  Get the FREE eBook (PDF) here: Yoga for Health (eBook)

Is Covid-19 More Severe If You Have Myasthenia Gravis?


In case you weren't aware, persons with Myasthenia Gravis (MG) are at increased risk of more severe Covid-19 complications.  As noted by the CDC:


"Based on the current evidence, a person with any of the conditions listed below [which includes the immunocompromised] is more likely to get very sick from COVID-19. This means that a person with one or more of these conditions who gets very sick from COVID-19 (has severe illness from COVID-19) is more likely to: be hospitalized; need intensive care; require a ventilator to help them breathe; die."


(Please note that this is not referring to Covid-19 vaccinations. See supporting articles here, here, here and here.)


Here are links to some articles that elaborate the risks for MG patients who do get Covid-19:


MGFA has a webpage, CARE-MG, that describes "a joint effort of the International MG/COVID-19 Working Group and neurologists from across the globe to capture outcomes of people with MG who have developed COVID-19 infections". 

MG FRIENDS PROGRAM

How It Works  -  Here’s the link.  The MG Friends program connects people with myasthenia gravis and their caregivers to experienced, trained MG patients who can share common experiences and help you manage your MG.  MG Friends is here to support you! This FREE peer-to-peer phone support program helps ensure that you have the information you need to face this diagnosis and improve your quality of life.