Why it’s important not to downplay or ignore new symptoms
I'm no longer chalking up all my health issues to myasthenia gravis
Do you ever just sit there, staring into space, wondering which diagnosis you can attribute your latest symptom to? Maybe you don’t even bring up new issues with your doctor, simply chalking them up to whatever health condition you know you have.
I’m guilty of doing both. As a former Army medic, I’m used to triaging other people. As my health began to deteriorate and various possible diagnoses started piling up, I started triaging myself. Soon, I attributed everything to myasthenia gravis (MG). When talking to my primary care physician, I also hid or didn’t bring up symptoms I considered just minor inconveniences. Can you relate?
I fought so long and hard to get my MG diagnosis that I struggled with medical burnout, and I didn’t want to go down that diagnostic rabbit hole again. After fighting to be heard for so many years, I have trouble remembering that I now have an amazing care team.
Now that my MG treatment is dialed in and I’m finally starting to feel better, I began to bring up some of these “minor inconveniences” to my physician, who stops in to see me when I’m at the clinic for my biweekly infusions of intravenous immunoglobulin. She scolded me for not bringing up those concerns before and reminded me that she can’t treat me if she doesn’t know what’s wrong.
Have I mentioned how much I love my doctor?
My list of diagnoses keeps growing
Now that I’m doing my best not to triage myself, a lot of my symptoms are falling under new diagnoses. In the past four or so months, I’ve added fibromyalgia, Eustachian tube dysfunction, and early menopause to my list of chronic health problems. Fun, right?
No, not really.
Anyway, why does this matter? Because, based on discussions I’ve observed in patient support groups, having multiple chronic health conditions or autoimmune disorders seems pretty common. Too often, one diagnosis is followed by a handful of others.
For me, the difficult part is trying to figure out which symptoms are caused by which condition. I downplayed the “whooshing” sound in my ear as part of my tinnitus for three years. Nope, it was actually because of Eustachian tube dysfunction. I thought my irregular menstrual cycle was a result of stress, medication changes, and my prednisone taper. Nope, it was because I’ve entered early menopause.
It’s tempting to self-triage and dismiss new symptoms when we don’t want to deal with the headache, energy, or burden of seeking treatment. Maybe if I’d brought up some of these issues earlier, I would’ve helped my team treat those conditions as well as my MG.
The universe seems to be reminding me that I need to shift my mindset. Accepting help, having honest conversations with my care team about everything I’m experiencing, and balancing activity and rest are all priorities I’m working on.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Mike Stabile
As we learn about our MG and begin to recognize it's various combinations of symptoms that are unique for each of us, it must not stop there. On top of all the MG symptoms, most all of us also deal with medication side effects. These two groups of symptoms tend to start blurring together after a little while and we don't realize that until there's a drastic change in one of them. Later as we learn to navigate our personal care, this multitude of symptoms becomes more distinct and easier to handle. However, for new MGers, this is sometimes a misunderstood and scary problem.
Greg Josephs
What a perfectly timed, informed and well-written words! Thank you.
If my fast food order is wrong, or there is an eclipse of the sun, I chalk it up to MG. I was diagnosed in 2002 and, like you, I collected 5 or 6 more conditions. Your article gave me more confidence to get a second opinion of my MG. My present neurologist once said that we'll grow old together, but he didn't say my MG symptons may change for the worst. I walk crooked and sometimes spit food when I slur. C'est la vie.
Keep up the good work!!