MG myths we might hear

dedicated to raising awareness of Myasthenia Gravis.

As patients, we are searching for answers. Because myasthenia gravis is a rare disease not all health professionals will be familiar with it. They might have read about MG in school, or even had discussion about it, but not all will have seen a patient with it.

It is, therefore, to the benefit of both patients and doctors, for patients to prepare a list of symptoms and experiences to share with doctor(s), to bring clarity to help those trying to pinpoint a diagnosis, and to reduce possibilities of hearing these myths.

Some myths

Some responses, repeated time and time again, seem to keep raising their head. They have been reported through the years by those eventually diagnosed, including with myasthenia gravis.

I lived this scenario sixty-five years ago.
(See Confusion I Experienced and Lessons from the Early Years)

Remember, this is true: Myasthenia Gravis is a rare, very complex, disease and there are other diseases that mimic part of it. Therefore, it may take time for conclusive diagnosis! But having good symptom experiences to report is helpful to physicians.

MG has no pain, so it cannot be myasthenia gravis.”

Myasthenia gravis is a rare disease. Hence, many doctors may never see a patient with MG, let alone talk with one long enough to hear their full story, feel their pains, know what their patient is going through. Those who have myasthenia gravis know pain. Patients can help their doctor by explaining real experiences to add to their knowledge. Help professionals understand by having detailed symptom information and clear descriptions.

“It’s just growing pains

This response from professionals who are unfamiliar with MG, usually relates to patients in their formative years. For unknown reasons, the physician may feel this answer satisfies the quest for ‘why’ the muscle pain, muscle exhaustion. It is helpful if the patient’s description can be as accurate as possible, with experiential evidence, helping those trying to find a diagnosis. If you feel more searching is necessary, keep looking.

“Swollen or inflamed knees”

If the knees are the area of concern, be sure to have experiences that have happened to accompany the visual the doctor will get by seeing your knees. Seeing swollen knees does not reveal the pain or fatigue that you feel. Be ready with detailed explanations of when this happens and maybe where. MG is inconsistent and like a ‘snowflake,’ different every time, each day, for each person. (Thus, it is called the ‘snowflake’ disease.)

“Everyone gets tired

Well, yes, we do. But not in the same way. Certainly, if experiences are explained, the exhaustion associated with myasthenia might be more easily recognized. The ‘tired muscles-rest-activity-tired muscles-rest’ cycle is a hallmark of myasthenia gravis. We could be talking about minutes for a full cycle, or it could extend to after a long walk, depending on the status of the disease that particular day or even particular hour. Muscle fatigue is much different than normal ‘tired.’

“Just wants attention,” or “it’s all in the mind”

Health professionals who have little or no experience with myasthenia gravis might not recognize the symptoms presented initially. When they have no immediate answer, their response could be that it is psychosomatic or imaginary, perhaps ‘to get attention.’ Again, detailed symptoms from the patient helps doctors find answers easier and hopefully, sooner.

“Exercise will make it better”

Exercise, while good in most circumstances, will not help a muscle that does not respond to a message from a nerve. No matter how strong, if the message does not get to the muscle, it will fatigue quickly. For most with MG, exercise becomes a tiring effort. Look for more answers.

We can question — then
help with detailed information

When we hear a myth-type answer, something that does not sound right, check-in with our ‘inner guide’…do we need to question more so better answers can be found? Help your health professional by giving well described information from experiences. Use words that will clearly define the issue being discussed to arrive at meaningful solutions.

As part of our campaign of awareness, we identify commonly known symptoms of myasthenia gravis. We speak of symptoms associated with myasthenia gravis, BUT the presence of any of these symptoms does not mean that anyone has a specific disorder. This site does not diagnose nor suggest diagnosis or treatment

LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles and you will go to each post separately, where comment section is at the bottom. Thank you.

Before you go…

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

Thank you for your interest and in sharing Myasthenia Gravis.

Read a portion of my story from My Lifetime with Myasthenia Gravis by Judith Allen Shone

others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Eighteen days – myths we might hear (c) 2021 Judith Allen Shone

Iris and peony StudioExquinoxArt
Iris Image by Nika Akin from Pixabay

Iris represents ‘wisdom and hope’

In support of the Myasthenia Gravis Insights website, and because I am still a 24/7 caregiver, I share my caregiver books. Thank you for checking them out! 🌞 You are my sunshine. ~Judith Allen Shone

For Alzheimer’s, Vascular Dementia, COPD and anxiety spouse-caregiving stories, learn about these two books, Accepting the Gift of Caregiving series.

Available to order in paperback, eBook or hardcover from local booksellers, or
online from your favorite site, or Amazon, or Facebook shop or caregiver-books. Or in Halton area of Ontario, order from:

Alzheimer Society Halton
4391 Harvester Rd
Burlington, Ontario

A Different Drummer Books
513 Locust Street
Burlington, Ontario


A story from one with MG

dedicated to raising awareness of Myasthenia Gravis.

When we introduce Myasthenia Gravis, people generally follow with, “what is that?”

And our standard answer is, “It means grave muscle weakness and is a rare, chronic, autoimmune neuromuscular disorder for which there is no cure.

For those who are ready to learn more, today’s feature article by Rebekah Dorr, an MG patient since 2011, offers a description that reads like a picture. See more about Rebekah following her article.

Thank you, Rebekah. It is indeed a pleasure to share your words here.

See also our site pages What is Myasthenia Gravis and Resources with links to sites with even more detailed descriptions.

We speak on this site of symptoms associated with myasthenia gravis BUT the presence of any of these symptoms does not mean that you have any specific disorder. This site does not diagnose nor suggest diagnosis. But, as part of our campaign of awareness, we identify known symptoms of myasthenia gravis. Always talk with your doctor(s) and work with them determine your situation.

What is Myasthenia Gravis?

By guest author, Rebekah Dorr

Our brain sends a signal to talk to our muscles through a chemical messenger called acetylcholine. This messenger travels down our nerves to a junction called the neuromuscular junction that sits between our nerve fibers and muscles. On specific muscles, sit acetylcholine receptors waiting to “catch” the chemical messenger so that the muscles can contract. Think of the messenger and receptor sites like keys in a key hole. They lock and turn and muscle contraction ignites.

In MG, the acetylcholine receptors are damaged by rogue antibodies who think they are helping our bodies but have ended up with incorrect blueprints. Our immune system deviates from it’s normal job and begins intercepting the chemical messenger and blocking and destroying the receptors. Our bodies end up becoming weak without the needed signals and “ignition” to begin contraction. So all our muscles know how to do is stay relaxed and use the little signal they can.

The more a patient moves, the more demand for the messenger acetylcholine that is sent to continue muscle contraction and the more our immune system sends antibodies to attack, leaving us with muscles that want to contract and cannot, making us tired and weak.

There are many things that can make this process worse too. The wrong meds can also block our messengers and make us weak. Heat, stress, thyroid disease, menstrual cycles, other autoimmune diseases and more all contribute in various ways.

For some patients, MG only affects their eyes. They can get double and/or blurry vision and drooping eyelids. Sometimes their extraocular muscles around the eyes get weak too and can cause eyes that don’t stay aligned etc. Headaches are common with vision issues in MG and the quality of life is impacted.

For other patients, MG progresses to other parts of their body. Some have it in their neck, jaw, tongue, throat, and vocal chords. Others may see it in their arms, legs and hands. Many will have it in all of these places or different combinations of it. It can also move around and affect different combinations of these muscles. The most difficult and life threatening impact is when MG attacks a person’s diaphragm causing respiratory distress and in some cases, crisis.

Patients can struggle to chew and swallow food and medications, play with and care for their children, consistently work at basic hygiene like showering every day, cooking, driving, singing, gardening and so much more. It will impact their relationships, their hobbies, their interaction with the medical world and society, their careers, their mental and emotional health and more. All patients have altered quality of life and some have it more mildly and some severe. It spans a wide range of symptoms, responses to treatment and prognosis.

Over time, the impact can quietly take its toll without you ever seeing it.

Yes, we are brave and we push on. You may see us laughing, posting pictures and even going out once in a while. But don’t doubt our struggle. Medicines can only go so far and they have their own symptoms we must cope with, on top of being believed, treated and supported in the midst of something that changed our whole world.”

Rebekah Dorr

What is Myasthenia Gravis?
Copyright© June 1, 2021 Rebekah Dorr
Original post on Facebook, Myasthenia Gravis Unmasked,
Used here with permission.

About Rebekah

I am so grateful that Rebekah Dorr, who, has lived with myasthenia gravis since 2011 when she was “…thrust into the new world of rare disease…,” is sharing her words here, with us.

With her wealth of knowledge, “learned as I went, out of sheer necessity,” Rebekah is a dedicated advocate on behalf of so many, fighting the stigma of MG.

Her determined ongoing efforts with her Foundation, her Facebook group and her blog, as well as continued conversations with those who want to know more, are evidence of her focused passion. I cannot say ‘tireless’ because those with myasthenia still get fatigued!

This dynamo of enthusiasm for finding a myasthenia gravis cure has been working as Founder, Director and CEO, running her non-profit Myasthenia Gravis Hope Foundation since early 2017.

She writes, “It is the mission of the MG Hope Foundation to be the voice of our patients, to focus on bridging the gap between patient needs and clinical interaction, create positive clinical partnerships, to bring advocacy and education to the forefront and to engage in the arts to help foster awareness and challenge the stigmas faced by the growing Myasthenic community today.”

She gives untold hours to others through conversation, making videos, and responding through the Facebook group, Myasthenia Gravis Unmasked, where she is Founder, owner and chief communicator with a community listing over 14,000 followers.

Their ‘About’ statement reads, “Here, we focus on clinical education and support while offering free clinical advocacy from a globally experienced advocate. Here, you become family”

As if that were not enough, Rebekah has written her blog, MGHope -Myasthenia Gravis since 2016, sharing, educating and clarifying myasthenia gravis issues while advocating/fighting to bring attention to the need for more studies, more doctor understanding, more clinical listening, all to help discover a cure for the devastating disease, myasthenia gravis.

LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles and you will go to each post separately, where comment section is at the bottom. Thank you.

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

Thank you, Rebekah…you’ve made my heart sing!

others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Twenty-four days – hear from one with MG (c) 2021 Judith Allen Shone

Flower art credit: Nicolai Mitrushov.

Iris represents ‘wisdom and hope’

Tell one person about MG

dedicated to raising awareness of Myasthenia Gravis.

My wish is that, at least once in this month, each one of us will tell someone else about, introduce them to:

Myasthenia Gravis
a rare, chronic, autoimmune
neuromuscular disorder for which there is no cure

Today, learn one more thing…how to pronounce the words:
my-us-THEE-nee-uh GRAV-is, (GRAY-vis)
myasthenia gravis.

Become part of the ‘ripples of hope’

When you skip a pebble across still waters, you create ripples. The molecules begin to come alive. They begin to nudge one another, begin to affect one another, and pretty soon they are dancing together in waves, splashing across the waterways.

Awareness is like that. When we tell someone about myasthenia gravis, one person tells one person who tells one person and pretty soon many people have felt ‘the ripple’ through conversation. MG will no longer be a secret; people will become aware.

Tell one person, start a ripple. Your words will expand and an awakening will begin…those ripples will become waves of knowledge and an ‘aha’ moment for someone.

That’s what awareness can do!


Let’s celebrate the advancing ripples together! Now, that you have learned the name, how to pronounce it and what it is, basically, and have told one person…please, go to the bottom of the page and write, ” I DID IT! I told one person.”

Easy, peezy

  1. Learn something about myasthenia gravis.
  2. See What is Myasthenia Gravis? to add to your understanding.
  3. See Resources for MG if you yearn to learn for more.
  4. Tell another person about myasthenia gravis.
  5. After that, go to the bottom of the INSPIRATION page on this site and make some excitement….write:
    “I DID IT” in the comments.
  6. You rock! You are awesome!!
    You can make a difference. Thank you!!!

Next post, June 7 “What is Myasthenia Gravis?” by Rebekah Dorr from Myasthenia Gravis Unmasked group on Facebook.

Watch our right side bar during June Awareness Month as throughout the month we add posts about many aspects of Myasthenia Gravis.

Thank you…you’ve made my heart sing!

others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Art credit, iris garden: Nicolai Mitrushov on etsy
Iris = Wisdom and HOPE

Twenty-seven days to tell one person (c) 2021 Judith Allen Shone

Children can read about MG

dedicated to raising awareness of Myasthenia Gravis.

Over the years, a philosophy of life has emerged. One that I can live with, one that resonates with my core: “I’m going to be very happy, and then do everything I have ability and time to do after that.”

It did not happen overnight, but I now realize the importance of having that way of thinking for ME…giving me permission to let the stress of life evaporate.

Exciting to find this book!

I’m Still Me, My Life with MG, is written by Jenny Coffey and illustrated by Jenny Coffey and Caleb Sawyer. I don’t know the assigned reading level, but I believe all levels of readers will benefit, although in appearance, I first think of children.

When I read this wonderful book by author, (Smiley) Jenny Coffey, with her positive tone, it warmed my heart. The story fit not only into my current caregiver life and my recently resurfacing MG life, but also into the style of life I had consciously yearned for all my nearly-80 years.

I am so glad Jenny Coffey wrote (and illustrated) I’m Still Me: My Life with MG about her childhood “adventure” with MG. I find the perspective so positive, so filled with optimism, a tone that will transfer when reading to children, as well as when they read it to themselves.

Why am I qualified to praise this book?

I have had myasthenia gravis (MG) since I was twelve, (for sixty-seven years) and know how much this is going to help youngsters have a better understanding of classmates or others who appear unfamiliar in some way, in this case, with a disease causing muscle weakness. This book will possibly help some understand the feelings of one with MG so that person might not have to go through shame and hurt.

Both parents and children will be able to read it, or parents can read to children, either way, both will become more aware of a rare, debilitating, disease that is going undiagnosed for many…(I am not sure why.) June is Myasthenia Gravis Awareness Month and I encourage everyone to read this book, ask your library to add it, share it with schools.

Beginning in June, Myasthenia Gravis Awareness Month, and maybe every chance you have thereafter, I ask you to TELL ONE PERSON the name of the disease and how muscle weakness affects the body. I have heard it spoken both “my-us-THEE-nee-uh GRAV-is” and “my-us-THEE-nee-uh GRAY-vis.”

I see a publishing date of 2019 noted on Amazon…. go have a look at this adorably illustrated, beautifully characterized book with important messages for us all.

Thank you, Judy Shone

LOOKING FOR THE COMMENT SECTIONS? Click titles of blog articles and you will go to each post separately, where comment section is at the bottom. Thank you.

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

others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Children can understand MG (c) 2021 Judith Allen Shone