Myasthenia Gravis

Support Group

of Southern California

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Message from our Group Leader

Hello, Everyone. Welcome to the website created in 2023 by and for members of the Myasthenia Gravis Support Group of Southern California. We intend to provide you with information and resources to help you learn about your MG and make the best decisions regarding your management of it. Caregivers will hopefully also find useful information here.


This site is always a work-in-progress as we continue expanding and updating it with pertinent content to help you navigate the complexities of your Myasthenia Gravis. If you have ideas for content then please feel free to email us at mgsocalgroup@gmail.com with your suggestions, including any pertinent web links. We are always looking for more and better information to add.


This support group started in 2019 in the greater Palm Springs, California region with 34 members and grew to over 100 members throughout the state today. It is now known as the MG SoCal Support Group. We work with other support group leaders, patients, caretakers and medical professionals to develop relationships and collaborate with them to improve our connections.

Connie DiPasqua

Support Group Leader

 contact: mgsocalgroup@gmail.com

Webmaster: Mike Stabile

mgsocalgroup@gmail.com

* Upcoming MG SoCal Group Virtual Meeting *


2nd Quarter Support Group Meeting - Saturday, June 8, 2024 - 9:00-11:00 a.m. (Pacific)  Zoom: TBD

Future 2024 DATES: Saturday 9/14/2024 9a-11a PST;  Saturday 12/14/2024 9a-11a PST

Request copy of meeting notice: mgsocalgroup@gmail.com

(Note: MGSoCalGroup members automatically receive these notices in advance from mgsocalgroup@gmail.com.)

Other Upcoming Virtual Meetings of Interest 

(Most meetings are virtual via Zoom; anyone may join and all are free.)

Why should you join a Myasthenia Gravis support group? (video)


Myasthenia Gravis Association Virtual Monthly Meetup - Monday April 22, 2024  4:30-5:30 pm Pacific - Register

Topic: Accessibility in Your Home


Georgia MG Support Group TBD (Pacific) 

Meetings are usually on the first Monday of each month.  For questions, contact Alexis Rodriguez at mggatalk@gmail.com


Miastenia Gravis Grupo Internacional de Apoyo (Virtual International Spanish MG Support Group) - May 11, 1 p.m. Central.

 Register for Zoom. In 2024 it will be on the second Saturday of the month, every other month, starting at 1pm (central time).  Info: contact Leah Gaitan-Diaz at lamgchampions@gmail.com.   Click the date to register for Zoom meeting in 2024:  Jul 13,  Sep.14,  Nov 9

HERE is an article about this support group.


Conquer MG - Anywhere MG Virtual Groups - (1) Tuesday, May 14 - TBD   (2) Thurs. May 16,  Noon-1:30 pm (Pacific) - TBD

We now have two virtual Anywhere Support Group meetings each month. These meetings are open to all MG patients and caregivers, wherever they live, held monthly on the 2nd Tuesday and 3rd Thursday, all Noon-1:30 pm, Pacific.

2024 Dates: June 11, July 9, August 13, September 10, October 8, November 12, December 10

2024 Dates: June 20, July 18, August 15, September 19, October 17, November 21, Dec. 19

Sign up to receive email notices of virtual meetings and other Conquer MG news.  Here is their List of Support Groups.

(YouTube recordings of previous Conquer MG meetings are available HERE.)


Stanford Support Group Meeting - Tuesday, May 14, 2024, 5:30 (pacific)  Register TBD  Topic: TBD

Meets the 2nd Tuesday of every Feb., May, Aug. and Nov.  Future meeting dates: @ 5:30 p.m. PST: 5/14/24, 8/13/24, 11/12/24.

**Note: Slide decks of previous meetings can be downloaded HERE.


San Francisco Support Group - Sunday, May 26 at 10:00 a.m. Pacific   Zoom: TBD

Upcoming meeting dates in 2024: July 7, Aug 18, Sept 29, Nov 17, Dec 29.  We meet about every 6 weeks on Sundays from 10:00 to 11:30 AM PT.  Zoom link is usually sent at the beginning of the month and/or the week before the meeting..  For questions or Zoom link, please reach out to Jessica Milanes at mgwarriorssf@gmail.com


Conquer MG - Men’s Virtual MG Support Group - Date: Thurs, June 13, 6:30 – 8:30 pm (Central) 4:30 – 6:30 pm (Pacific) REGISTER

Future 2024 meetings:  September 12 (Register), November 14 (Register)

This group meets online and is open to men who have MG, wherever they live. After registering (required), you'll receive a confirmation email containing information about joining the meeting. Leaders: Gary Jackson & Neurologist David Randall, DO, will be on hand for questions.  Or email info@myastheniagravis.org to let us know which meeting you want to attend and we'll send the virtual link.


Phoenix MGFA Monthly Support Group - TBD @5 PM AZ (5 PM PST)  -  Zoom -TBD

Future meetings in 2024:  Every month on the Last Tues (except Dec.): Apr 30, May 28, Jun 25, Jul 30,  Aug 27, Sep 24, Oct 29, Nov 26, Dec 17.


PNW Support Group - TBD 

Contact: Sue Kenyon pnwmggroup@gmail.com,  Kathie Bibeau bibeau02@msn.comZach McCallum hiyazeke@gmail.com


MGFA Wellness Webinar Series - TBD 

Recordings of previous MFGA Wellness Webinar Series are available HERE.)


Myasthenia Gravis Association - TBD - Register: TBD 

(YouTube recordings of previous MGA meetings are available HERE.)


Caregivers Support Group - Date/Time: TBD 9:00 PM (Eastern) - Register in advance for this meeting. After registering, you will receive a confirmation email containing information about joining the meeting. For questions, please contact Toni Gitles at tonigitles@gmail.com.    Meetings on the third Wednesday of the month, 9:00 pm Eastern Time.  See the article: MISTAKES CAREGIVERS MAKE AND HOW TO AVOID THEM


*NEW* Seronegative Support Group - TBD  Contact: snmggroup@gmail.com for more information.


 Virtual Meetings info for these and other MG support groups can be found here on the MGFA website.

IT'S COMING!!

2024 MGFA Orange County / Los Angeles Area Community Health Fair


WHEN:

Saturday, June 08, 2024

10:00 AM - 2:00 PM


WHERE:

Irvine Marriott

18000 Von Karman Ave.

Irvine , CA 92612


MGFA’s free Community Health Fairs are designed to help you or your loved one navigate MG. Hear from and talk with medical professionals, access educational and wellness resources, and meet others in the MG community. Connect with each other, share stories and guidance, and learn more about managing this disease.


 CLICK HERE TO REGISTER (It's free!)


ANNOUNCEMENTS

(go to Announcements Archive)

Mestinon shortage (Myasthenia Gravis News) There's increasing, anecdotal reporting of Mestinon 180 mg ER shortages (not the 60 mg version). Users might want to keep a close eye on their pharmacy's supply and be prepared to contact other area pharmacies if their primary site does report delays in filling Rxs. Also, it is very dangerous to take three 60 mg tabs at once as a replacement for the 180 mg. The 60 mg are NOT extended release (ER) and you could suffer a major reaction (cholinergic crisis) and end up hospitalized, if not worse (scroll down to "OVERDOSE" on this web page from Healthline). Definitely talk to your neurologist about how to best take replacement 60 mg tabs as you wait for the resupply of 180 mg.

Here's a survey for you from the CoVAD team (from an MGA newsletter):

Collating the Voice of people living with Autoimmune Diseases (CoVAD 3) Survey

The CoVAD team comprises a group of physician-scientists undertaking a project to determine patients’ subjective well-being. By assessing these, we aim to understand your life holistically including factors influencing life satisfaction. These answers will help physicians understand the healthcare interventions needed to improve the lives of people living with chronic diseases. 

 

Anyone over the age of 18 years, who is healthy OR has any autoimmune disease is eligible to take the survey. Translations into approximately 20 languages are currently underway and will be finalized in the coming days.

Survey Link: https://www.surveymonkey.com/r/TV6JF75

Group member Jane Robbins has released her book/musical, MYASTHENIA GRAVIS: THE MUSICAL! (Kirkus Reviews). You can support her endeavor and purchase the book on Amazon HERE. UPDATE:  See my book review on myasthenia-gravis.com.

Mike Stabile

Finding the Latest MG News

One method I use for finding breaking news about MG is Google search. Open Google browser, click the Tools icon, click Any time and choose Past 24 hours. If you want to skip all that, just click THIS LINK and save the page as a bookmark. Happy searching!

WebMD has a blog devoted to MG. Articles written by a staff of contributors cover a wide range of subjects pertaining to living with MG.  Check it out.

 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.

NEWS

(go to News Archive)

The impact of myasthenia gravis severity on work and daily activities (Muscle and Nerve) Excerpt: "Patients with MG experience substantial work impairment particularly those with more severe symptoms, highlighting an important way in which patient quality of life is negatively affected. More effective treatment strategies would enable patients to lead more productive lives and could impact decisions relating to work and career."

CDC: Latest COVID Vax Cuts Hospitalization Risk in Immunocompromised People (MedPage Today) "— But fewer than one in five of this vulnerable group have received the updated shot"

Fatigue and Fluctuating Symptoms in MG (NeurologyLive)  A panel of preeminent Neurologists discuss fatigue and symptoms in MG. Two short video excerpts.

Measles is a Thing Again



MGers on high levels of immunosuppressants should talk to their MG doctor before deciding to get a measles vaccine, because it has live viruses.

Californians: There's been a huge change to the Med-Cal program for older adults and people with disabilities. This change happened on January 1st, 2024.  Watch this video presentation to learn more about these changes and how to enroll in Medi-Cal.  The good stuff starts at 14:40.


Also, here's an L.A. Times article from February that dives into many of the Medi-Cal changes that might benefit you.

FEATURED ARTICLES

(also see Articles Archive)

Family caregivers can help shape the outcomes for their loved ones - This article examines the family caregiver's role when a patient is hospitalized.

When to Use Mobility Devices (myasthenia-gravis.com) Cains? Walkers? Wheelchairs? Mobility devices are not shameful

Misha Grayson Coleman (WebMD) has written, and continues to write, excellent articles about how she adjusts her daily activities to the unpredictability and hardships of her MG. Her writing taps directly into her mental and physical challenges and how she's learning to confront them. Click her name above and delve into some very inspiring accounts of confronting MG.

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

My Vision Difficulties Because of Myasthenia Gravis (Myasthenia-gravis.com)

also: Managing Vision Issues (Myasthenia-gravis.com)

Best OTC Medicine and Health Products | U.S. News U.S. News has produced a very comprehensive review of most over-the-counter (OTC) drugs, rated by pharmacists and dermatologists. If you ever feel overwhelmed by the choices available when you walk into a drug store (especially when you're sick), you will likely find this article quite helpful.

YOUR MUSCLES


MG is a disease of the muscles. Do you know your muscles? What types of muscles are there? How do they work? Learn all about your muscles in this information-filled webpage (1440) loaded with articles and videos. The more you know about your muscles, the better you can maintain them, a vital component of MG self-care.

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.

3-Part Video Interview With MG Patient J'Sean Nunnery

Part 1     Part 2     Part 3

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