What people living with myasthenia gravis want you to know

October 2020

Insights into myasthenia gravis in the words of the people who know it best

Want to understand the everyday reality of living with a rare disease? Raremark users regularly share their experiences with us. It gives them a chance to learn from others, and also provides a chance for them to be heard by the people working on new treatments. Here’s what people living with myasthenia gravis (MG) want you and the world to know about their condition.


Myasthenia gravis is real 

A recurring theme within our MG community is a struggle to be believed. People living with MG don’t always look sick - the community sometimes refers to MG as ‘an invisible illness’ - and so being believed by their family and friends, as well as healthcare professionals (HCPs), is a real struggle. 

“It is real! It's not made up. It is not a figment of my imagination. I am not a hypochondriac. I am not making it up for attention. I do hurt. I do stumble. I do struggle. I am scared. It is real!” 

“I'm not lazy or faking an illness, this isn't a pity party, nor am I arrogant. I do the best I can on a day to day basis and everything affects me, my health, my stamina, and mood.” 

“MG will teach you that just because you can’t see that we are sick, doesn’t mean we aren’t. We don’t fake being sick, we fake being well!”


Getting a diagnosis is a struggle 

We asked our MG community members how long it took them to get a diagnosis. We found that it’s not unusual for community members to have struggled for a long time, and there’s usually a huge gap between when people first notice symptoms and when they get a formal diagnosis. Unsurprisingly, when people had a HCP familiar with MG, their diagnosis experience was a lot more positive. 

"32 years."

"It took me a full 10 years! I experienced my first symptoms when I was 12, they progressed at 13 and I got a correct diagnosis at 22. I am now 34. It's tough but I'm managing."

"5 years... the most depressing time of my life. Doctors were saying I was doing it to myself, put me on Prozac... sighhh."

"10 years, symptoms were blamed on another autoimmune illness and I was told by two neurologists that I was depressed!"

"Many, Many Years, approx. 10 yrs!! It was all in my head, it was stress, i was doing it to myself! Just Awful."

"About 1 year and about 4 different doctors trying to figure it out, plus MRI, swallowing test, and camera down throat, etc. Finally a specific blood test from a neurologist did it." 

"2 years and 11 doctors later, an ophthalmologist said he thought I had MG and sent me to the MDA clinic. They had a diagnosis for me within 2 days after they started testing." 

"Once I explained what was happening he [internist] just looked at me and said 'Myasthenia Gravis'. My response was 'back at ya'. He was right on, lab tests proved it.  He had seen two cases when he was an intern.  For me, I was diagnosed literally within hours of noticing symptoms."

"Surprisingly, just about 6 months. Went to several doctors but the ophthalmologist was the one that knew it was MG. That was in 1987."


Healthcare professionals don’t always know everything 

Our MG community members frequently encounter HCPs who don’t know enough about their disease or can’t always answer their questions. There’s also a real mix of people who are satisfied with the care they’re receiving from their HCP and those who aren’t. 

“I found it very helpful to educate my primary care doctor. She had never had an MG patient before and her knowledge was limited.”

“I had an ER doctor tell me I didn’t look sick.” 

“I learned the hard way that you need to try and stay on top of your symptoms and if your assigned neurologist isn't helping you, don't be afraid to speak out and even request a new neurologist.”

“My doctor said I look just fine! I’m looking for a new primary care doctor. I have given him plenty of time to do some research!”

“Seronegative is a thing! And even expert doctors don't know it all.” 

“I was accused of drug seeking and conversion disorder. The only person that believed me was my primary neurologist. She has been one of my biggest advocates. Whenever I need her she's there for me. No matter how many times I have been hospitalized she's right there by my side.”


Knowledge gaps are distressing 

Members of our MG community struggle with understanding their condition fully and find the knowledge gaps from both their support network and their HCPs daunting.

“New patients are not told too much about MG and what to expect. There should be literature that can be given to the patient breaking down the different types of MG and the symptoms for each. There should be literature given out to help patients understand the common treatments for MG. As in my support group we try to take the fear out of MG and help patients and their families understand it better. When a new patient has to face this with their doctor they have no idea and their fear increases because of lack of knowledge.”

“I wish it was more heard of like MS/Lupus etc. No one I know has heard of it and I have to fight for disability and on days it's a mammoth task even to walk about the house.”

“It’s unpredictable for my husband. I am always scared.”

“No one ever knows what to do with you ! It’s a pure guessing game!”


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