One morning in September 2021, Nicole Sodders woke up unable to see clearly. She blinked but had trouble clearing her blurry vision.
At first, she tried to downplay the episode, telling herself she must need to cut back on screen time.
But by the next day, her blurry vision had progressed – she was seeing double. She knew something was very wrong.
Nicole had heard of myasthenia gravis; botulism, which she studies as part of her work in epidemiology, can present with similar symptoms. She quickly scheduled an appointment with an ophthalmologist.
She shared her suspicions, and the doctor ran a few tests. Just a few days later, she had a confirmed diagnosis: ocular myasthenia gravis.
“I felt really lucky to be diagnosed so quickly,” Nicole shares. “I know that’s not always the case.”
Nicole started treatment right away, and her symptoms initially responded well.
But a CT scan, which is recommended for most people after a new MG diagnosis to investigate for possible tumors in the thymus gland, showed that Nicole had an enlarged thymus. Her doctor recommended surgery to remove the gland, which went well. The family hoped for a remission.
A sudden turn
With the surgery behind her, she and her husband decided to expand their family. Just four months later, she was pregnant. But soon, her MG symptoms began to flare. Instead of remission, she faced the opposite – her ocular MG progressed into generalized MG.
Roughly half of those diagnosed with ocular MG will progress to the generalized form of the disease, with muscle weakness throughout the body. Symptoms can be serious and include difficulty breathing, swallowing, and walking.
Treating MG while pregnant creates a challenge, as the doctor must balance the needs of the patient with potential detriments to the developing fetus.
“Because of my pregnancy, I couldn’t take any of the newer medications,” Nicole shared. Her neurologist at the time favored a conservative approach, with minimal treatments to address her symptoms.
She struggled, feeling weaker and worrying more. Looking back, she reflects, “I wish I had pushed for something like IVIG at the time.”
After her child was born – a healthy baby girl – Nicole’s health took a serious turn.
“I really went downhill. I had my first ‘I don’t want to die’ type of moment with MG. I knew I had to make a change with my medication, but I had to wait until I was done nursing.”
Her symptoms made everyday tasks difficult. She couldn’t keep up with her older child, an active preschooler. She struggled to hold her newborn. All of it took a toll on her mental health.
“I definitely spiraled into bad feelings, like I wasn’t a good enough mother.”
Finding the right treatments
Addressing her MG symptoms became a top priority to improve both her physical and mental wellbeing. She started plasmapheresis and, for a time, felt real relief.
“I felt how good it was to be symptom free for three months,” she said.
Plasmapheresis is not a sustainable treatment – it is intensive and meant to be used in an emergency situation – so Nicole transitioned to IVIG, a commonly used MG treatment that is generally considered safe for nursing mothers. After six months, she didn’t feel much improvement. She decided it was time to wean her daughter and move to one of the newer, more targeted therapies.
After switching neurology offices and navigating insurance approvals, she was able to try two different targeted therapies. Since starting a compliment inhibitor earlier this year, she is feeling better and feeling hopeful once again that she might be able to get control of her symptoms.
Leaning on others for support
Since her diagnosis, Nicole has learned to lean on her support system.
“I ask for help from others, including my husband and my colleagues.”
Nicole kept working even as she battled MG symptoms; as an epidemiologist, she investigates food and waterborne diseases for the State of Florida. Her work often requires travel, but her employer has supported her health needs.
“The State has been very accommodating. When I needed to go out to a site and couldn’t drive because of double vision, I would go out with a colleague. I had flexibility to adjust my workday around my IVIG treatments or work at home as needed.”
Accommodations have been key to enabling Nicole to keep working. She also finds comfort in knowing she’s not alone.
“Knowing that it’s okay to ask for help and where to find people – like groups on social media – is something I have gained from this experience. I’ve learned that you don’t have to be strong every day. Doing your best is all you need.”
Looking back, one of the hardest parts of her MG journey has been self-advocacy.
“Standing up for myself with a medical provider I didn’t agree with was difficult. I felt that way even as someone who knows how to speak to providers! I can’t imagine how others without the medical knowledge might feel.”
Because of the challenges she has faced, Nicole is choosing to speak out about her MG experience during MG Awareness Month this year.
“I’m really trying to use this moment, now that I’m in a good place, to get involved in things that matter – so I can be a voice or offer the encouragement that I wish I had heard when I needed it most.”