Walking in someone else’s shoes

dedicated to raising awareness of Myasthenia Gravis.

Many of us have heard the expression, “Before you judge, walk a mile in another man’s shoes.” Those words might apply here.

Back in June, when I first posted How Myasthenia Gravis Feels, I wondered if anyone would want to try this little exercise? I never added it to that page. So here, two months later, we have it. Maybe you can experience a little of how it might feel being the one with MG.

Spend thirty minutes walking in my shoes.

If we can walk in someone else’s shoes for a period of time, we sometimes will come to understand them with compassion and patience.

So, do you want to try that? …just for thirty minutes … turn on a timer after you are set up! Here you go.

Put masking tape, or a patch of some kind, over one eye so it will not open and so you cannot see out of that eye. It only has to hold for thirty minutes. If possible, tape the other eye half way shut. You will see out of it, but not clearly.

Now, continue with what you were doing…cooking, perhaps, or reading or shopping? Carry on with life knowing you cannot change the eye’s ability to stay open, so you accept it. After you rest your eyes for an undetermined period, the eyelids may open on their own.

This may be all some with MG experience at first. For others, this disability may come on later during their time with the disease. For me, my sight began to blur and my eyelids began to droop five years after onset of the disease, but prior to diagnosis.

If you wish, while the eyes are taped, tie one hand behind your back. Consider your physical capabilities are curtailed by weakness and all you can use is one arm and hand. A book is too heavy to pick up, an empty shoulder bag may seem too heavy to carry.

How will you feel asking someone to help you do tasks you want or need to do?
How will you feel admitting you can’t do the things you know others can do all the time. MG can impact in psychological as well as physical ways. I imagine you might become exhausted doing what you were formerly doing before the thirty minutes began. You might feel a need to rest. Carry on.

After thirty minutes, remove the tape from your eyes and untie your arm.

The difference, of course, is those with MG cannot remove the tape from their eyes or untie their arms or legs. Their weakness goes on, and on, and on, hopefully with periods of rest between.

You have just experienced a similar sensation to MG. Of course, it cannot be the identical feeling, but you might now understand how those with involuntary weakness are struggling, day after day, to do what many others take for granted, without a first or second thought.

My wish is that this wee exercise might help those who want to know, develop a compassion for those with diseases, who might seem different in some way, for those who, not by choice, are living in situations unlike their own. I hope you notice a connection evolves when we try to “walk in someone else’s shoes, ” an empathy that helps us relate to one another in the family of humans.
Thank you taking the time to walk in my shoes. ❤️

If you found titles in the list in the right column that might increase your MG knowledge, take time to read them now. If you know someone who might benefit from reading or learning from the awareness topics on this site, don’t miss an opportunity to give/send them the blog site link, Myasthenia-Gravis-Insights.com. Thank you for being part of raising awareness of Myasthenia Gravis.


Walking in someone else’s shoes (c) 2021 Judith Allen Shone

Art:
Butterfies 1,2. Tatiana Mitrushiva @Mitrushova on etsy
Butterfly 3. Image by JL G from Pixabay

Recap of Myasthenia Gravis

dedicated to raising awareness of Myasthenia Gravis.

We have been talking a lot about myasthenia gravis!

What have we learned?

Thank you for becoming aware of MG!

We have explored the rare, chronic autoimmune neuromuscular disorder called myasthenia gravis with the intention of raising awareness.

Maybe this recap will help refresh what we’ve read in the posts, listed in right side column.

So, what have we learned?

The main focus throughout the month was to tell one person one thing that we learned about myasthenia gravis. …there will always be time to learn and share about this debilitating disease!

Recap of Myasthenia Gravis Awareness Month
– in order of appearance –

June has provided us with an opportunity to raise awareness of myasthenia gravis, but we can now continue to learn and research and study and understand this debilitating disease, which most times comes by surprise and stays for a lifetime.

Awareness

Getting us started, we learned that in 2020, there were an estimated 500,000-700,000 cases of myasthenia gravis worldwide, with the frequency number used 20/100,000 of population, per Medlineplus.gov. While it may be rare, for those diagnosed with it, MG is life changing —forever.


Click to read more

Children can read about MG

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 children read to themselves.


Tell One Person about MG

Tell one person, start a ripple about myasthenia gravis. Say it:
my-us-THEE-nee-uh GRAV-is, (GRAY-vis) – myasthenia gravis.

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!


Our Myasthenia Gravis story counts.

Are you a caregiver, a patient, a physician, or anyone who has had an experience in the world of myasthenia gravis? Consider sharing few moments, perhaps a few paragraphs, from a true story, a comment about a situation, an episode that was not expected…something that could help someone else. Something we all can learn from. Send by email and we will post it.


A Story from one with MG

For those who are ready to learn more, today’s featured article by Rebekah Dorr offers a description of Myasthenia Gravis that reads like a picture. Herself an MG patient since 2011, Rebekah is amazingly passionate about caring about those with MG. She shares information and communicates to encourage them through her Myasthenia Gravis Unmasked Facebook site.

Read Rebekah’s story on this page. An incredible lady!


MG Symptoms to recognize

Among symptoms most frequently associated with myasthenia gravis are drooping eyelids, double vision, weak arm and leg muscles, difficulty chewing, and shortness of breath.

This is not an exhaustive list, but review it on the page where far more are listed. Speaking with many patients, they would confirm these as ‘early symptoms.’


Myths we might hear

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 so they can avoid referencing myths—that are likely not true, such as:

  • MG has no pain
  • Only growing pains
  • Inflamed knees
  • Everyone gets tired
  • Just wants attention
  • Exercise will make it better

Myasthenia Gravis terminology

When talking about myasthenia gravis it helps to know the vocabulary, the terms used by others, the words recognized by doctors that trigger their thinking in certain ways.

We can contribute to our own health through understanding if we are somewhat aware of what words mean.


How myasthenia gravis feels

…It is a bizarre feeling to be normal one moment and within seconds you feel your body has rejected you. Yet, in a way, it has. The muscles do not get the message from the brain and the effort to try to move anyway is too fatiguing….


Who might get MG

The disease seems to be able to strike anyone at any age, including children. MG is more frequently seen in women aged 20 to 30, and men aged 50 and older. Men over 60 and women under 40 are at higher risk.


Myasthenic crisis

Myasthenic crisis is an emergency.

Myasthenic crisis happens when the respiratory muscles become too weak to move enough air in and out of the lungs. An emergency situation exists. Such a situation could necessitate a ventilator to help with breathing.


Myasthenia Gravis flareups

Flares.

An important possible behavior experienced by those with myasthenia gravis is a flareup… “…often an acute, temporary worsening or increase of symptoms…”


Causes of Myasthenia Gravis

Cause? Hereditary? Can MG get worse?

Myasthenia gravis is inconsistent, called the ‘snowflake disease,’ different with each person, not to mention the overlap in symptoms with other diseases, making it hard to diagnose. Keep checking with the numerous websites to add to your knowledge.


Prepare for appointment

Listen when Myasthenia Gravis speaks.’

Prepare for your doctor appointment with meaningful data to be able to be your own advocate as much as possible.


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


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


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

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.

Want to walk for,
or donate Canada to,
Myasthenia Gravis Society of Canada?
Visit Step Up for MG Fit or Press Release


Recap of Myasthenia Gravis © 2021 Judith Allen Shone

Myasthenia Gravis flareups

dedicated to raising awareness of Myasthenia Gravis.

Flares

An important possible behavior experienced by those with myasthenia gravis is a flareup.

On June 22, 2021, Rebekah Dorr, on her open community Facebook page, Myasthenia Gravis Unmasked, wrote this about flares. She reminded me that flares were important to mention in Awareness Month.

Rebekah Dorr states:

“Flares are often acute, temporary worsening or increase of symptoms (can be a few specific ones or generalized). Flares can be caused by poor sleep, stress, weather and hormonal changes, medication changes (increase, decrease or discharged) etc.

“They can usually be managed at home with good communication with a skilled provider and what you have learned about your specific symptoms and presentation with time.

“However, respiratory involvement is another matter. Respiratory weakness with a flare should be considered an exacerbation which has the strong potential to lead to crisis and should be taken care of very carefully. Do not brush off this particular symptom. You may be able to manage at home if it’s more mild and you have supportive equipment or rescue meds (like a temporary boost in steroids or changes to mestinon as prescribed by your dr), but moderate and severe symptoms should always get checked out quickly.

“If you ever feel a flare or exacerbation is concerning you and in your gut you know something is wrong, don’t hesitate to get help.

“I know we face a whole lot of crap at the ER and hospitals. A lot of it. And we get scared to go. But I would rather we go and try and fight before it’s too late and we are being rushed in and intubated or worse.”

(c) 2021 Rebekah Dorr

I think it is important to note that, while everyone is different, the Outlook, found on Medical News Today:
“…people with MG can live a life without regular flareups as long as they stick to a regular treatment plan.”


Read more about Rebekah Dorr, and the post she shared here earlier this month, “What is Myasthenia Gravis?”, a pictorial description in words.

A patient since 2011, Rebekah is a passionate advocate for those with MG, who avails herself for those with questions by communicating on/monitoring her Facebook community site. Find out more about this amazing lady!


Again, having these symptoms does not mean you have MG, but they might be an indicator for discussion with your doctor.

Visit sites for Support

If you are searching for answers for ‘muscle weakness’ symptoms and have reason to believe you might want to talk to your doctor about myasthenia gravis, spend some time online reading comments others have shared. Visit Supporting One Another.


If you have access to Facebook and can find the site, Myasthenia Gravis Unmasked, it will be worth your time to browse through the immense volume of information there. There are noted nearly 15,000 followers— you will find you are not alone.

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.


Seven days – MG flareups (c) Judith Allen Shone

with (C) 2021 Rebekah Dorr her writeup on flares.



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
289-837-2310

A Different Drummer Books
513 Locust Street
Burlington, Ontario
905-639-0925
diffdrum@mac.com

Myasthenic crisis

dedicated to raising awareness of Myasthenia Gravis.

Myasthenic crisis occurs when the breathing capability is challenged by weakness of the respiratory muscles that help us breathe.

Myasthenic crisis is an emergency

Myasthenic crisis is characterized by worsening of muscle weakness, resulting in respiratory failure, a life-threatening condition.

Myasthenic crisis happens when the respiratory muscles become too weak to move enough air in and out of the lungs. An emergency situation exists. Such a situation could necessitate a ventilator to help with breathing.

If you are having trouble breathing, and you have myasthenia gravis, (or any other illness), call 911 or get to nearest ER, ask to notify your MG doctor, and advise ER staff specifically of your myasthenic crisis situation, to help them focus on your needs.

Doctors need to be familiar with myasthenia gravis to evaluate in more detail the needs of the patient with respect to the specific causes beyond ‘muscle weakness.’

Read more about myasthenic crisis – link to sites on What is Myasthenia Gravis? and Resource for MG pages.

As part of our campaign of awareness, we identify commonly recognized 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


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


Want to walk for,
or donate in Canada to,
Myasthenia Gravis Society of Canada?
Visit Step Up for MG Fit or Press Release

COMING UP: Some causes of MG, and Suggestions on how to prepare for doctor visit will be discussed in upcoming posts in June.

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.

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.


Nine days -an MG crisis (c) 2021 Judith Allen Shone

Iris represents wisdom and hope

Who might get Myasthenia Gravis

dedicated to raising awareness of Myasthenia Gravis.

The good news is that myasthenia gravis,a rare, chronic, autoimmune, neuromuscular disease, is most likely not going to appear in your body; that, statistically, you will never experience this disease.

But it does seem to appear spontaneously. Thus, the not-so-good news is that we cannot predict, we cannot plan, we cannot forecast which ones of us might get myasthenia gravis. Scientific studies have given us some common threads and markers to help doctors narrow down and categorize so they can diagnose a disease that has many symptoms and that shares a few symptoms with other diseases.

Who might get Myasthenia Gravis?

Myasthenia Gravis is generally known to affect any of the muscles that you control voluntarily, (eyes, mouth throat, limbs) as well as chest muscles, and the diaphragm, which is both a voluntary and involuntary muscle. Historically, the most common symptoms are drooping eyes, double vision, difficulty chewing, choking on food, and abnormal limb muscle weakness.

The Myasthenia Gravis Fact Sheet, (NINDS), of Apr. 27, 2020, relates:“Who gets myasthenia gravis? Myasthenia gravis affects both men and women and occurs across all racial and ethnic groups. It most commonly impacts young adult women (under 40) and older men (over 60), but it can occur at any age, including childhood. Myasthenia gravis is not inherited nor is it contagious.”

  • Myasthenia gravis is not contagious.
  • It is not inherited, although more than one case in a family has been seen.
  • People with MG, under treatment, can have a relatively normal quality of life with normal life expectancy.
  • There is no known cure.
  • The disease seems to be able to strike anyone at any age, including children. MG is more frequently seen in women aged 20 to 30, and men aged 50 and older. Men over 60 and women under 40 are at higher risk.
  • Risk factors for myasthenia gravis include having a personal or family history of autoimmune diseases.
  • MG occurs across all racial and ethnic groups

As part of our campaign of awareness, we identify commonly recognized symptoms of myasthenia gravis. We speak of symptoms associated with MG, 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 PLEASE, contact your health provider if you sense unknown symptoms of any kind. We suggest that you discuss symptoms with your personal doctor, your neurologist or your opthamologist.


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.

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.


Twelve days – who might get MG (c) 2021 Judith Allen Shone

Iris image by Tatiana Mitrushova


It is quite a life experience to be associated day-in, day-out with two serious, chronic, diseases: I have Myasthenia Gravis, in and out of remission, and my spouse has Alzheimer’s.

In support of the Myasthenia Gravis Insights website, and because I am still a 24/7 caregiver for my husband with memory loss, 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
289-837-2310

A Different Drummer Books
513 Locust Street
Burlington, Ontario
905-639-0925
diffdrum@mac.com

Myasthenia Gravis terminology

dedicated to raising awareness of Myasthenia Gravis.

When talking about myasthenia gravis it helps to know the vocabulary, the terms used by others, the words recognized by doctors that trigger their thinking in certain ways.

Many health care professionals have MG in their medical school class. Neurologists may have studied MG more, but since it is considered a rare disease, many still may never see a patient with myasthenia gravis. And since there are other diseases that mimic myasthenia gravis, physicians are thorough in their search for conclusive diagnosis.

Learning the language

Being familiar with the terminologies is helpful when talking with someone in the medical profession. We want our words to make sense to the health professional in the same way that when they speak to us we want to understand what they are telling us.

We can contribute to our own health through understanding if we are somewhat aware of what words mean. There are a number of words most commonly used in conversation. When you do not understand, stop the conversation and get clarification.


Myasthenia Gravis

MG is generally known to affect any of the muscles that you control voluntarily, (eyes, mouth throat, limbs) as well as chest muscles, and the diaphragm, which is both voluntary and involuntary.

There are several types of myasthenia gravis. (MG Type)

Some commonly used terms

  • Myasthenia Gravis: from Latin and Greek: grave or serious muscle weakness
  • Exacerbation: also known as flare-up when symptoms become more severe and/or increase in frequency
  • (MG Type) Bulbar weakness: when weakness and fatigue in the neck and jaw occur early in MG
  • (MG Type) Congenital myasthenia gravis: when the disruption at the synapse happens because of genetic defects, not because of antibodies
  • (MG Type) Generalized myasthenia gravis:  when MG is affecting multiple muscle groups throughout the body
  • (MG Type) Juvenile myasthenia gravis: a rare form of MG, expressed by ocular muscle weakness or generalized weakness, with onset before 18 years of age.
  • (MG Type) Muscle-specific tyrosine kinase (MuSKmyasthenia gravis: affects mainly the facial bulbar muscles. It is noted for a unique disease development from more common MG types
  • (MG Type) Ocular myasthenia gravis: when only the muscles that move the eyes and eyelids are affected
  • (MG Type) Transient neonatal myasthenia gravis: when MG is transmitted from an affected mother to her fetus. The symptoms in the baby normally disappear two to three months after birth.
  • Myasthenic Crisis: complication of MG characterized by worsening of muscle weakness resulting in respiratory failure; can be life threatening
  • Neuromuscular junction: synapse, between a motor neuron nerve terminal and its muscle fiber, where communication between motor nerves and muscle fibers happens that facilitates voluntary movement.
  • Synapse: where electrical signals turn into chemical information, which is then conveyed between neurons…
  • Simplistically: Brain message>nerve>synapse>muscle
  • and the muscle does not get the message because the communication in the synapse doesn’t happen.
  • Thymectomy: surgical removal of the thymus gland
  • Thymoma: Tumor of the thymus gland.
  • Thymus: A flat, H-shaped gland lying mainly behind the breastbone (sternum) and in front of the heart. It is important for immune system development early in life, and shrinks with aging.
  • Remission: symptoms disappear completely for some time even without treatment

EYES:

Commonly recognized among myasthenia patients as one of the first areas where they observe weakness. However, not all myasthenia cases begin with eye muscle issues.

  • Ocular myasthenia: characterized by variable weakness of the muscles of the eyelids and eye movements. This leads to droopy eyelids (ptosis), double vision (diplopia), or both.
  • Diplopia: Double vision, horizontal or vertical, in various degrees. Vision may improve with one eye closed
  • Ptosis: Drooping or falling of one or both eyelids that may include variations. Upper eyelid muscle weakness can increase as muscles tire.

MOUTH:

  • Dysphonia: voice disorder
  • Facial expressions: around the mouth and eyes

THROAT:

  • Dysarthria: slurred or impaired speech
  • Dysphagia: difficulty swallowing

LIMBS:

  • Muscle weakness: Hand and finger weakness
  • Proximal limb weakness: Limb weakness
  • Muscle weakness: Trouble walking

Respiratory:

  • Respiratory failure is a condition of extreme muscle weakness, particularly of the diaphragm and chest muscles that support breathing. Breathing may become shallow or ineffective. When you have trouble breathing, get to emergency, letting the staff know you have myasthenia gravis and are in crisis. A ventilator may be required

As part of our campaign of awareness, we identify commonly recognized 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


When browsing for additional information, print out the fact sheets – you can make notes on them later. Or create your own.

The National Institute of Neurological Disorders and Stroke invite you to print out their FACT SHEET from their website. It is quite helpful in explaining terms in their context:

Dig deeper into the world of Myasthenia Gravis on this NIH site. Begin to zero in on what specifically you can relate to and make note of the website URLs, the words used, the sources of information for discussion with your doctor.


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.

Please, SHARE THIS SITE ...
others can learn by reading what you have discovered… a site solely for awareness of Myasthenia Gravis.


Myasthenia Gravis terminology (c) 2021 Judith Allen Shone

Iris images ElenazlattaArtDesign
Iris represents wisdom and hope

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


Please, SHARE THIS SITE ...
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
289-837-2310

A Different Drummer Books
513 Locust Street
Burlington, Ontario
905-639-0925
diffdrum@mac.com