How Myasthenia Gravis feels

dedicated to raising awareness of Myasthenia Gravis.

How does MG feel?

It is difficult to explain myasthenia gravis to someone who has never had it. Even patients will confirm, despite living with it continually, they have difficulty when discussing with health professionals. Finding words to accurately describe how something feels can become baffling, and those feelings transformed into words, many times, tend to seem inadequate.

Because it is a ‘snowflake’ disease, each person will have different responses, reactions, reports, for different muscles involved. So the words chosen are important.

Simply, we understand that muscles respond to a message from the brain through the nervous system. That message transfers from the neuron to the muscle cell through the the neural junction, the synapse. If the transfer does not take place, the action requested in the message coming from the brain will not occur.

I have had Myasthenia Gravis since 1956 and here will relate how it has felt by way of relating what happened to me. 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. The following are examples of what muscles might be affected and how it might feelfrom my experiences.

Limb muscles

(1) You are walking normally, and then, without warning, some part of your leg muscles feel weak, you might even feel leg or hip-area ‘pain’ in your effort to move your legs. They can no longer carry you or hold you up. You feel their strength ‘seem to drain.’ You must sit or rest. You cannot say…”just one more step”…there is not one more step—your leg muscles are fatigued to their limit. You fall if you go on because even though the muscles are strong, those muscles have not received the message from the brain to move, to activate. When you try to go on, you will collapse. The ‘pain’ of the failed struggle adds to the fatigue.

(2) You are carrying a book, perhaps a coffee table book of photos. It only weighs about four pounds. On the way to the table, your arms no longer can hold it, your hands release because they have no power, ‘no strength left,’ to hold the book, the arm muscles cannot hold up against the weight of it—the book feels like it weighs a ton as it slides from your arms to the floor. You do not have strength left to pick it up, until your arm and hand muscles rest.

Eyelid muscles

(3) You are reading and your eyelids seem to gradually fall closed on their own, without your prompting. But they don’t respond to your ‘brain asking’ them to remain open. It is not similar to falling asleep, because you are still awake, just your eyelids want to close.

Because they do not open ‘on command’ from the brain, you may feel you want to tape them open; some patients do. You can see through your eyes but the muscles of the eyelids are weak and will not keep the lids open without rest. You cannot read with closed eyes. After an unspecified amount of rest, the lids will respond to the brain message and open again.

Other muscles will react similarly.

The muscles of the throat, eyes, mouth, limbs, as well as chest muscles, and the diaphragm, which is both voluntary and involuntary will respond in similar fashion if impacted by MG. These examples are just to give a sense of the helpless feeling for those who have never had MG. If you read comments on various Facebook MG sites, you will learn more how MG feels from those experiencing it.

Want to try Walking in my shoes?

(Added August 28, 2021- jas)

We’ve heard the age-old idiom, “Walk a mile in another man’s shoes.” The words apply here. 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, it was five years before my eyes were involved, 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. I imagine you will become exhausted doing what you were formerly doing before the thirty minutes began. You might ask to rest. Carry on.

After you have been 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 sensation similar to MG. I hope it helps you understand how those with uncontrollable weakness are struggling to do what many others take for granted.

Thank you for taking the time to connect with compassion.

The Myasthenia Gravis Foundation of America also offers a way to simulate how MG might feel.

The pdf file, “The MG Experience” © 2020 Rebecca Molitoris (May 12, 2020), is presented by the Myasthenia Gravis Foundation of America on their website. The activities, descriptions and pictures in their presentation are offered with the expectation that others who do not have myasthenia gravis can experience what it might feel like for those who do have MG.

NOTE: All activities might not be necessary to get the idea of how it feels, but PLEASE READ ALL THE INSTRUCTIONS on the initial slides in their presentation to understand.

NOTE: This MGFA kit shall not be used or duplicated for personal profit or gain. All rights reserved © Rebecca Molitoris 2020


Questions?

Do you have questions about myasthenia gravis? Are you looking for more information? You can ask questions in the comments section below and I will get back to you, or you can contact either of the two organizations on the right column for more options, or visit the Resources for MG page for many mor options.


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

Share this site to help let others become familiar with myasthenia gravis. Thank you.

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.


How Myasthenia Gravis feels (c) 2021 Judith Allen Shone

Artwork from Tatiana Mitrushova. MitrushovaCliipArt on Etsy.

Iris represents wisdom and hope.
The hummingbird is a symbol of joy and happiness. Its colorful appearance brings good luck and positive energy to our lives.


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!

I DID IT!

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!

Please, SHARE THIS SITE ...
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