responses – Myasthenia Gravis Insights

…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.

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.

H o w 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.’