3 mistakes I made on my myasthenia gravis diagnosis journey
A columnist shares what she'd do differently in seeking a diagnosis
Six years to a tentative diagnosis. Seven years to a confirmed diagnosis. Eight years to thymectomy. Eleven years to find a treatment plan that worked.
These are the landmarks of my myasthenia gravis (MG) journey. The starting point was my medical retirement from the U.S. Army in 2011. Being seronegative and having a post-traumatic stress disorder (PTSD) diagnosis in my medical records created barriers and hardships in obtaining an MG diagnosis.
I believe that my background as a combat medic in the Army was both an asset and a liability. It provided me the knowledge to recognize when I wasn’t being taken seriously or when my symptoms were being dismissed. But having this knowledge was also a detriment because it fueled a fire in me that burned with anger, frustration, doubt, exasperation, and a bit of desperation.
Because emotions were fueling my desire to find out what was wrong with me, I became the squeaky wheel. I pushed — hard — for answers. At one point, I copped an attitude and stopped taking the medications I’d been prescribed. At 30 years old, I was taking 30 pills a day and was no closer to answers. I’d had enough.
My care team at the time focused more on treating my symptoms than piecing together the puzzle. By the time I copped an attitude, I was being outspoken to my team, actively expressing my frustration, and looking to outside sources to “fix me.”
Mistake No. 1
That led me to my first mistake. I was speaking from an emotional place that only served to solidify the idea that my symptoms were likely related to conversion disorder (also known as functional neurological disorder) and would get better when my PTSD was treated and managed. This idea infuriated me, and I fought back hard against it. It wasn’t until I approached the problem objectively and agreed to meet my team halfway that they began to take me seriously and dig deeper themselves.
Mistake No. 2
My second mistake was using the medical terminology I’d learned as a medic while talking with providers on my care team. Rather than conveying my knowledge and understanding of my body, I believe it came across as overcompensation. To them, I probably appeared to be grasping at straws and diagnosing myself with Dr. Google.
Trying too hard to relate to my team understandably challenged them, and several became defensive. As a result, I struggled to feel heard and understood as my body grew weaker and my mind became more frantic.
Mistake No. 3
My third mistake was triaging myself. I was afraid of being accused of malingering or overreacting to what seemed like small inconveniences. The blurred and double vision, raspy voice, and increased weakness when overheated all seemed inconsequential compared with the leg weakness, trouble eating, and immense fatigue I was experiencing.
But maybe if I’d had the confidence earlier in my journey to tell my care team about all of my symptoms, it wouldn’t have taken so long to get diagnosed with MG.
While I’m thankful that I’m comfortable being the squeaky wheel and advocating for myself, if I’d approached the journey to diagnosis with a better frame of mind, many of the hardships I endured likely could’ve been avoided.
If I had a do-over, I would:
- Be objective and open to ideas and treatments that may not fit what I had in mind.
- Be completely honest about every symptom I was experiencing.
- Ask for guidance rather than specific treatments.
- Know my audience and conduct myself accordingly.
- And last but not least, I would read Myasthenia Gravis News to get the support I craved and find comfort in knowing I wasn’t alone.
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.
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Comments
Carol Lawson
Many years ago, I had a professor who said, “Doctors find what they are looking for” — which is to say that if they aren’t looking for it, they won’t find it — and the global ignorance about this disease, even when presented with clear-cut lists of symptoms is astounding. My journey (although I would hardly dub the collection of doctors I saw was a “team” ) was similar, and finally got treatment that was effective 13 years (at the onset of the scourge of Covid in this country) after the crippling onset of generalized MG. I often spoke with my doctors, asking what it was I was failing to communicate (being a speech language pathologist), as one misdiagnosis after another was made. The most glaring issue was that I am a woman, and this genetic disposition is seen by many doctors, including females, as the root cause of any and all unexplained symptom patterns they are not familiar with.
Carol Burger
So true, many of the doctors have a pre conceived notion. For years my MG was believed to be Multiple Sclerosis, because many of the symptoms are similar and being a fair haired women of Scandanavian descent which usually accompanies an MG diagnosis. It would never show us on tests as MS because it wasn't that. Finally after many years a doctor who was not a neurologist started searching from scratch and found the "droopy eye." That was different and led him in a different direction and after a specific blood test for Acetycholine receptors was found and then treated with the main medication at the time, Mestinon it really helps
Pat Thompson
As a disabled Vet myself, who was recently (finally) dx , I am interested in how you navigated the VA disability etc. I have seen the presumptive list includes MG but only if it is dx to 30% compensation within 1st year after discharge.
Shawna Barnes
Hey Pat. The presumptive severity depends on how bad the MG is with symptom management. I am rated at 100% SC T&P from other issues from my service. I am actually working with my current neurologist on getting the MG to be considered presumptive. It took so long to piece all the pieces together, that the individual symptoms are just listed in my chart from the early days. I'll add it to my list of topic ideas to write more about the connection of service and MG. I hope you are doing well! - Shawna