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