‘No One Could Figure Out What Was Wrong’

By
Taylor Kane
Aug 02, 2021 • 4 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

It all started in 2012, after a seemingly normal day at work: Alexis’s left eye became very sensitive to light and felt like it was filled with shards of glass. Then exhaustion settled over her and she went home to rest, only to wake up the next morning with so much weakness in her left side that she worried she’d had a stroke. She saw an ophthalmologist who thought her symptoms were likely autoimmune in nature, and who told her she had a long journey ahead of her. He was right.

Over the next few months, Alexis’s symptoms worsened — she had difficulty walking, shortness of breath and “sounded drunk” when she tried to speak. She had an unrelated procedure, which caused her symptoms to flare and left her bedridden for a year and eight months. “I could not sit up for more than 30 minutes,” she remembers. “I couldn’t stand. I had to have help bathing. No one could figure out what was wrong.”

That year, Alexis saw over 30 medical professionals, some of whom dismissed her concerns. “I was told it was anxiety; that I was too young and too pretty and looking for attention.” In 2014, she took a chance and moved from Florida to Las Vegas in the hopes of finding answers. “I come from a small town so I had exhausted every medical professional in my area.” After seeing a new set of doctors, Alexis got diagnosis after diagnosis, but none painted the full picture. She was told she had lupus, multiple sclerosis, diabetes, generalized anxiety disorder, bipolar disorder, autism, Raynaud’s disease, fibromyalgia, lyme disease, functional neurological disorder and more.

A year and a half later, Alexis moved back to her home state, where her symptoms seemed to get better, a period that lasted two short years. Still, she managed to put herself through nursing school and in 2018, began working 12-hour hospital shifts. “That is when my symptoms came back full force,” Alexis explains. “I just crashed. I couldn’t get out of bed. My eyes would not physically open.”

She started the process of finding a diagnosis all over again. Alexis says she was lucky to find a physician associate at neurologist’s office who went through her entire medical chart and told her he suspected she had the autoimmune condition myasthenia gravis (MG). Alexis had been down this road before, so she asked for confirmatory testing. While her antibody test came back negative, her nerve study and electromyography (EMG) showed consistencies with myasthenia gravis and in December 2019, Alexis was officially diagnosed.

Myasthenia gravis is a rare neuromuscular autoimmune condition characterized by weakness in the muscles involved in voluntary movements and breathing. As Alexis describes, “It’s when the nerves and the muscles don’t communicate properly.” It’s referred to as a “snowflake disease” because all individuals experience the disease differently, and while there are treatment options, they don’t work for all patients.

Alexis’s diagnostic journey has affected her not only physically, but mentally. It was hard for her to accept that she had myasthenia gravis after receiving so many misdiagnoses. And once she started to accept her diagnosis, Alexis says, she began the emotional process of grieving what her life could have been like without MG. “It’s like you’re dissecting your past life trying to make a new life, but you don’t even know what that looks like.”

Today, Alexis no longer works as a nurse, and instead spends her time helping people by advocating for patients with myasthenia gravis. A few months ago, she started a blog called Uncharted Malady to “help people [with chronic illnesses] advocate for themselves, learn how to take care of themselves the best they can and do their part as a patient.” She says it’s therapeutic for her to write about her ongoing story with myasthenia gravis.

Alexis is an Ambassador for AllStripes’ myasthenia gravis research program and has signed up to receive all of her medical records in a secure online portal and contribute her de-identified medical data to research projects. She is excited to receive her records and finds that aspect of the AllStripes platform a major benefit for someone with a rare chronic illness.

“I think it’s awesome that AllStripes provides the medical records. I think that is a benefit to every single person that deals with a chronic illness.”

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

Together, we can make a difference.

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.