The subtlety of my MG symptoms made diagnosis a challenge

If you’ve read my diagnosis story, you know it took me a decade to find out I have myasthenia gravis (MG). But why? Didn’t I see professionals? I did. Weren’t they familiar with MG? They were. Were my symptoms unclear? Absolutely, or this journey wouldn’t have been so long (and sometimes funny).

My MG symptoms seemed to love playing hide and seek, confusing both me and the doctors. It all started when I was 9 years old with an intense cough, shortness of breath, and the sensation of being strangled. When I was that age, MG wasn’t even on the radar.

To make things more complicated, my mom was pregnant with my third younger sister and had a chronic cough. Doctors concluded I was imitating her for attention.

I won’t lie; that frustrated me. Deep inside, I knew my symptoms weren’t psychological. I was a clever, expressive child with no jealousy of my siblings, but almost nobody believed me. The psychologists I saw didn’t detect jealousy but said I had high intellectual potential and attention-deficit/hyperactivity disorder. If my physical symptoms didn’t offer answers, how could psychological ones? In hindsight, I might’ve been good at unconsciously hiding my disabilities.

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My parents and I traveled from hospital to hospital searching for answers. No one could explain why my shortness of breath worsened at night — a classic sign of MG, as energy levels deplete by the end of the day. No one questioned why my legs felt heavy despite normal reflexes. Rare diseases like MG weren’t considered.

Even when I finally tested positive for anti-acetylcholine receptor (AChR) antibodies, which are tied to muscle weakness, I had an electromyography (EMG) that didn’t confirm MG. The doctor was so relieved he didn’t investigate further. It wasn’t until another doctor asked me to stop taking my medication and do some physical exercise that MG showed up clearly in the test results.

Even with my MG diagnosis, the struggle didn’t end. Doctors often dismissed my symptoms, insisting MG shouldn’t cause pain. I did experience joint pain, however, as well as frequent tendonitis. After persistent research, I suspected fibromyalgia and pushed for testing. The result? Positive.

Now I’m experiencing bone pain, and though we’re exploring rheumatoid arthritis as a possibility, the journey is far from over. I’ve learned to advocate for myself. My doctors now know I won’t stop until I have answers.

Some people might accuse me of collecting what they call “titles” for my conditions, but they don’t understand how crucial it is to have a name for your pain. A diagnosis isn’t just a label — it’s a road map to treatment, understanding, and adaptation.

If your diagnosis journey feels endless, don’t give up. You might meet a doctor with a fresh perspective or connect with someone who has similar symptoms and can guide you. Statistics, after all, might not always be on our side. Answers might take time if your symptoms fall within the rarest of the rare among MG patients.

Still, I remain hopeful. The increasing availability of online resources and medical advancements means better options are on the horizon. The answers are never too far away. Stay curious, stay persistent, and remember that you’re not 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.