Myasthenia Gravis Insights

May 18, 2021 (updated 2024) by Judith Allen Shone

Myasthenia Gravis!
Have you heard of it?
Can you explain the basics to someone else?

I am soooo grateful you took time to visit, to join with MYASTHENIA GRAVIS INSIGHTS in the ongoing campaign to raise awareness of Myasthenia Gravis!

It is precisely because Myasthenia Gravis is so difficult to explain that many of us with MG feel disbelieved and alone. Indeed, it is even called the “snowflake disease” because it presents differently and varies from person to person. “The degree of muscle weakness and the muscles affected differ greatly from patient to patient and from time to time.” While there is no exhaustive list, it is my desire to spotlight a good number of resources for those searching for more information.

Because I have lived with MG since 1956, I am inspired to shine a ray of light, my beacon of hope, as I add my voice to the universal commitment to raise awareness of myasthenia gravis, for the layman and those beginning to search. Please join me!

December 2023: Watch (and read slides) in the
Know Your Antibody by Dr. Srikanth Muppidi at Stanford University
YouTube video, presented by the Myasthenia Gravis Foundation of America.
This Wellness Webinar will “…deepen your understanding of MG….”

Ask your Dr. about Myasthenia gravis and
your antibody.

It’s good to know your antibody.

Please note our unsponsored URL is now:
https://myasthenia409975489.wordpress.com
Bookmark it!
It’s easier to remember
if you think of it in segments,
but type without spaces…

Browse: What is Myasthenia Gravis?
– it is a good place to begin

Do you have, or do you know someone with,
muscle weakness? slurring speech? drooping eyelids?

NEWS FLASH
Watch the movie,
A MYSTERY TO ME,
a documentary about Myasthenia Gravis.

Or click here to view the US site MG-United…go to DOCUMENTARY on their main top menu and go from there.

MG-United says: “A Mystery to Me
is the first documentary series about myasthenia gravis to reveal the hidden toll this unpredictable, unfair illness takes on three people who live with it every day.”

Rare and complex

Myasthenia gravis is a very rare and complex, chronic, autoimmune, neuromuscular disorder that affects approximately 700,000 people globally, per Raremark Rare Diseases, who show between 36,000 and 60,000 people in the US and 10,000-12,000 in Canada are known to have MG. (12-20/100,000 in population).

The explanations shown on What is Myasthenia Gravis? are meant to be brief, yet concise, on an introductory level. If you recognize signs, then perhaps this is a disease you will want to explore further online and with your doctor.

This site offers an introductory glance at myasthenia gravis, to bring attention to MG as one of many possible causes associated with weak muscles. However, it is not to be used in lieu of discussion with a professional health care provider.

Insights can bring understanding

Insights shift our understanding—a clear “aha” moment nudges us as it unexpectedly presents a solution to a problem.

AWARENESS of myasthenia gravis can change perception.
Patients begin to build confidence and restore courage.
They might even feel relief, calm, and experience that powerful expectation—HOPE.
More importantly, stigma and misunderstandings, for ourselves and about others, begin to disappear!

It only takes minutes … to shine YOUR inner beacon of hope for MYASTHENIA GRAVIS

(1) Take time to recognize the name myasthenia gravis.

(2) Please…Tell someone else what you have discovered about Myasthenia Gravis. Say the name. Let them become familiar with the sound: (my-us-THEE-nee-uh GRAV-is), (`my˖ĕs˖`thēēn˖ē˖ă `grăv˖ĭs) pronounced

listen to the words

(3) Tell them several symptoms:
– grave muscle weakness,
– slurred speech,
– droopy eyelids,
– blurred or double vision,
– weak body muscles,
– trouble swallowing or
– trouble breathing at times.

(4) You become a beacon of hope for myasthenia gravis… for awareness, understanding and hope for a cure.

🌞 Thank you for joining me to raise awareness! 👍🥰.

First time to the site?
Explore blog topics seen in right column!
Learn something new about myasthenia gravis and pass it along!

“Be a rainbow in someone else’s cloud.”
Maya Angelou

Intention

My intention here is to informally introduce resources, sites with various types of knowledge, some might include history, others research, all to ‘light up’ myasthenia gravis, a chronic, autoimmune, neuromuscular disease that few people have heard about. Plus, I share personal stories.

MYASTHENIA GRAVIS INSIGHTS will be a relatively small, focused, site. It will not be an all-inclusive site. But, instead, it will be an introduction that you can personally follow up elsewhere if you are interested. You may or may not be able to relate to this information, or this information may or may not apply to you, but we thank you for wanting to learn about Myasthenia Gravis.

Why me?

First, while I am not a doctor, nor a professional health care provider of any kind, for more than sixty-five years, I have been living with various degrees of the neuromuscular disorder myasthenia gravis, often referred to as MG.

I’m a ‘middle-aged’ senior. Today marks the first moments towards completing my 82nd year. It’s time I helped spread the word about MG.

In these later years of my life, I feel driven to bring optimism, encouragement, and revelation to those looking for information related to muscle weakness, to to be part of a campaign that shines light on this disease so more people with “grave muscle weakness” can become familiar with myasthenia gravis.

For over ten years, I I spent my time as a caregiver for my spouse with Alzheimer’s, COPD, and anxiety, beginning just after retirement. During that time, I have been hosting a caregiving site related to dementia and have published two books* about our ongoing journey—always passionate about helping other spouse-caregivers find reassurance, hope and courage through knowledge and true stories. I wanted to help them discover they need not walk their path alone.

And now, I am even more inspired to do the same for those who feel they might have, or do have, myasthenia gravis. I am fulfilling the promise I made to myself to help illuminate myasthenia gravis.

Read a brief account of my story. …dedicated to raising awareness of Myasthenia Gravis.

LOOKING FOR THE COMMENT SECTIONS on the blog post pages? Click titles of blog articles on list in right column, and you will go to each post separately, where comment section is at the bottom. Comment sections are at the bottom of all top-menu pages. Thank you. 😊

Links to support groups
locally, or online

Confusion heard by those those challenged by MG.

Ten curious responses to myasthenia gravis

Thoughts for preparing for your visit with your doctor

I hope you will be moved to take time to share our website link so others can also learn!

This is an awareness site only.
No diagnosis or treatment suggestions. Mainly, it’s support and links for those who are searching for ‘reasons they have weak muscles.’

You’ll find:

What is Myasthenia Gravis?
Brief descriptions with links to various sites with abundant information.

Read How it feels to have MG

Resource links where you can find and read more about myasthenia.

Guest Author post: “What is Myasthenia Gravis,” by Rebekah Dorr, a patient since 2011, from FB Myasthenia Gravis Unmasked.

Follow the blog posts seen in right column, during the 30 days to briefly learn a little at a time about MG

Newest and most viewed postings are listed in the right hand column of this page.

Learn something new and pass it along to someone who did not know.

NOTE: Remember to refresh a page to be sure you have the most current version showing on your screen.

Watch our right side bar to see most recent posts about many aspects of Myasthenia Gravis.

Want to walk for, or donate to Myasthenia Gravis Society of Canada?
Visit Donate to MG Canada

For the record

If you think you may have a medical emergency,

> go to the nearest emergency department,
> or immediately call 911, or the emergency number in your area,
> or call your doctor.

This WEBSITE is in no way a substitute for any level of medical help or advice. Please, refer to your physician when unknown symptoms persist.

Any questions that come up should be directed to your physician or other professional health care provider. Our only suggestion is for you to contact your own health care provider for clarification or further information. See also Disclaimer Record

Myasthenia Gravis Insights

Please, SHARE THIS SITE ...
a site solely for awareness of Myasthenia Gravis.

PHOTO CREDITS:
Watercolor & logo flowers image by Luciana Silva from Pixabay
Romantic table image by MiVargof from Pixabay
combined with abstract image by JL G from Pixabay
Man with tablet image by Karolina Grabowska from Pixabay
Sun rays Image by Clker-Free-Vector-Images from Pixabay

The iris images used on the blog posts were chosen because
iris represents wisdom and hope.

Host/Author Judith Allen Shone’s caregiver books, as referred to in the above text:

* Hosted blog & website: Accepting the Gift of Caregiving,
where caregivers encourage one another.

* Two caregiver books
Accepting the Gift of Caregiving book series,
Is There Any Ice Cream? and Did You Hide the Cookies?
by Judith Allen Shone

For over ten years, I fulfilled the role of caregiver 24/7 for one with Alzheimer’s, Anxiety and COPD. I share that story…the discoveries while being a caregiver, the support, the classes, through the emotional desperations experienced during those years….in the first two books in the series Accepting the Gift of Caregiving…both are in large print: