I received an email from a young lady who had recently been diagnosed with Myasthenia Gravis. Up until that diagnosis she was convinced she was losing her mind. Many of us with MG have had a similar journey, so I thought I would share her story with you.
She said it started subtly, about three years ago. She’d be brushing her hair in the morning, and her arms would feel like lead weights after just a minute or two. By evening, her eyelids would droop so much she’d look half-asleep. Chewing food became exhausting and dinner turned into a marathon as she’d have to rest between bites. Her voice would fade mid-sentence and become hoarse. She said the fatigue was like something she had never before experienced. It wasn’t “tired from a long day”; it was “bone deep tired”, the kind that made simple tasks like folding laundry feel impossible.
At first, she chalked it up to stress. She was juggling a demanding job, two kids, and the usual chaos of life. “Everyone gets worn out,” she thought to herself. As the symptoms worsened however, she started seeing doctors.
Her primary care physician listened politely, ran some basic bloodwork, and said it was probably anxiety. “You’re overthinking things,” he told her. She was advised to start some relaxation techniques. He also prescribed an antidepressant, and when that didn’t help, he suggested therapy. She went because she thought maybe he could be right. Maybe it “was all in her head.”
The therapist was kind, but after a few sessions, even she seemed puzzled. “This sounds physical. Have you seen a neurologist?” the therapist asked gently. After getting a referral, the first neurologist ordered an MRI which came back normal. The neurologist told her it could be chronic fatigue or perhaps depression manifesting somatically. Once again, she was basically told it was all in her head. She left feeling more defeated than ever.
Over the next couple of years, she saw more specialists, three neurologists, an ENT for swallowing issues, and an ophthalmologist for the double vision that came and went. Tests came back inconclusive. One doctor stated outright, “Some people just have vague symptoms with no clear cause. You might have to accept it’s stress-related.”
Having heard that from so many professionals, she began believing them. She began accusing herself of focusing on her symptoms, exaggerating, being overly dramatic, or worse – being a hypochondriac making it all up for attention. She convinced herself to ignore the symptoms and just get on with her life.
It wasn’t long before she had a real scare. Her ptosis (drooping eyelids) became constant and she could barely keep her eyes open while driving. With a job and two kids, she couldn’t give up driving, but she knew it was unsafe to continue driving with her vision being impeded like it was. She knew she had to do something. She went back to her last neurologist but this time the doctor listened differently. He asked about her fatigue, tested her arm strength (noting how it declined with use), and ordered a specific test for an antibody for acetylcholine receptors. He also ordered an EMG. When the results came back positive, he sat down with her and explained, “You have Myasthenia Gravis. This is real. It’s not in your head.”
At this point, she didn’t know what to think. From one perspective, she was glad they had finally been able to pinpoint the cause of her trouble. From the other perspective, she was alarmed and frightened to learn she had an autoimmune neuromuscular condition for which there was no cure. The only glimmer of hope was that MG was treatable through medications, immunosuppressants, and other therapies.
She advised she had recently started treatment and although it’s still early, she’s already experiencing improvement. She wanted to share with anyone feeling dismissed, unheard, or convinced it’s “all in your head” to trust your body.
As those of us with MG know, rare diseases like Myasthenia Gravis are often missed because symptoms fluctuate and mimic stress or other issues. That’s why it’s often called “the Snowflake Disease”. Symptoms come and go unexpectedly. It can take years to get diagnosed. The lesson to be learned from all of our stories is don’t give up. It’s not all in your head. You’re not imagining it.
All of us wish this young lady the best of luck in finding the right treatments and medicines. I pray for all of my readers and will add her to my list. I encourage you to add her to your prayer list, as well.
The thing to remember is we’re not in this alone. God is always with us. On top of that, we have each other. Together we can remain #MGStrong!