My MG Story: Danielle's Journey with Seronegative Myasthenia Gravis

Two years ago, Danielle was preparing for an appearance at the fan convention GalaxyCon when something unexpected happened—her right eye drooped just minutes before she was supposed to leave. She brushed it off, attributing it to the Botox treatments she took to help treat her migraines.

At the end of her appearance, she felt exhausted, but that was nothing new; as fantasy-book author, Danielle liked to interact with as many fans as possible. Working conventions often meant running on empty.

But when she returned home, she started seeing double. Each day, her vision worsened. She vividly remembers waking up one morning to a world that felt slated and doubled.

“I felt like Alice in Wonderland,” she says.

The Long Road to Diagnosis

Not long after, she saw a neurologist, who suggested it could be myasthenia gravis. Danielle, a nurse, recalled learning about MG in school. At the time she was told it was so rare that she would probably never see a case.

She was prescribed pyridostigmine (Mestinon), a common first-line treatment for MG, but wasn’t formally tested or diagnosed. Unlike many people with MG, Mestinon didn’t provide much relief from her symptoms.

In the months that followed, she bounced between nine different neurologists trying to find answers to her weakness, double vision, and exhaustion, which kept getting worse. One suggested that her symptoms were due to lingering Botox effects. Another gave her a blood test to check for autoantibodies but never provided the results. Still another suggested that a serious flare that left her struggling to breathe was part of a complex migraine.

Finally, she received a single fiber EMG (SFEMG) test, which is used to diagnose myasthenia gravis, especially in those without autoantibodies known to cause the disorder in their blood. The test, alongside her symptoms, indicated a diagnosis of generalized myasthenia gravis.

She had an answer, but the journey wasn’t over.

Challenges of Seronegative Myasthenia Gravis

Because she does not have an autoantibody in her blood, Danielle is considered seronegative. Accessing treatment and support as a seronegative MG patient comes with significant challenges.

“Not all doctors like to deal with seronegative MG,” Danielle says. “There isn’t as much they can do with regard to treatment.”

She reached out to an old neurologist friend she had met early in her healthcare career, who took on her case. Though she had found a doctor willing to fight for her, finding the right treatment plan was not easy.

She cycled through three different types of medication – two which did not work well for her, and one she was allergic to – and was set to begin an FcRn treatment last year. But then her trusted neurologist passed away.

She was back to searching for a new provider.

After several months, with continuing MG symptoms that made her daily life very difficult, she found a doctor she trusted. Then, another curveball—insurance denied their request for the FcRn. (The treatment is not FDA approved to treat seronegative MG though sometimes allowed “off label.”)

Though disappointed, Danielle and her doctor forged ahead. Danielle recently started IVIG and hopes this treatment will help.

Danielle wanted to share her treatment journey to help others understand how difficult it can be to find the right approach, especially for those with seronegative MG.

Learn more about myasthenia gravis treatments
MGFA Treatment Webpage

Mourning the Life That Was

It’s been a long and exhausting two years. Daily life changed in ways Danielle never expected.

“Managing this disease is a full-time job,” she says. “People say, ‘Well, you look good.’ I can fake it for 45 minutes, but tomorrow I’m going to pay for it.”

The unpredictability of MG—some days she wakes up with a wandering eye, not knowing which side will be affected—has made social interactions difficult. People misinterpret her unsteady gaze or assume she’s being rude when she avoids handshakes to protect her compromised immune system.

Before MG, Danielle was a martial arts expert. Losing that part of her identity has been one of the hardest adjustments.

“It makes you bitter, and you try not to be,” she admits.

The physical challenges of MG have introduced new fears—fears of falling, of being vulnerable, of losing independence.

She also mourns the little things—no more high heels, no more spontaneous adventures. And the emotional weight of it all can be crushing.

“There are stages of an MG diagnosis just like the stages of grief,” she says. “Sometimes you just want that moment to feel your feelings.”

Writing Through It All

Writing has been Danielle’s refuge. She started in 2019, inspired by a patient she was caring for at the hospital where she worked. That encounter led to Birth of the Fae, a fantasy series exploring the origins of faeries, pixies, dryads, and other magical creatures.

Last year she chose to start publishing her books independently to have the flexibility to work at her own pace, a decision that has helped since she faces double vision and unpredictable flares.

Acceptance is an ongoing process, and some days are harder than others. But she’s determined to help people understand the reality of MG.

Announcing her diagnosis publicly was a big step. During an Instagram Live event late last year, she finally shared her MG story with her readers and followers.

“Now, they understand,” she says.

To make her books more accessible, she released them all on audiobook, knowing how difficult reading can be for MG patients. Her books now have a teal ribbon on the back cover in honor of MG awareness. She even has plans to incorporate a fictional illness similar to MG into one of her future stories.

Her radio show, Once Upon an Author, is another platform where she shares not just her writing journey, but also her life with MG.

“MG is part of the tapestry that makes up me,” she says.

Over the last two years, Danielle has found a way to keep going. She has adjusted her work, her lifestyle, and even her expectations—but she hasn’t let MG take away her dreams.

“I want people to know, you can still do things with MG,” she says. “Your world doesn’t stop. You just have to make adjustments.”