It Took Doctors 30 Years to Diagnose My Autoimmune Disease as Psoriatic Arthritis

Here’s how one woman finally found out she had the autoimmune disease psoriatic arthritis after seeing a rheumatologist.

Mollie Carman’s journey through the complexities of psoriatic arthritis (PsA) is a testament to the challenges faced by many individuals with autoimmune diseases. Her story highlights the importance of awareness, early diagnosis, and finding the right medical care, ultimately serving as an inspiration for others who may be on a similar path.

Living with Psoriatic Disease from Childhood

Mollie Carman’s experience with psoriatic disease began at an incredibly young age, leaving her with indelible memories of its impact on her life. Even as a baby, she bore the burden of psoriasis on her scalp—a distressing reminder that this disease can afflict individuals from infancy.

However, the most significant turning point occurred when she was about 13 years old. At that tender age, she developed a form of psoriasis known as guttate psoriasis, a condition that often arises as a result of preceding strep throat infection. This eruption of small pink lesions affected nearly 90% of her body, presenting a daunting challenge that left her husband likening it to a poison oak rash. As if this were not enough, Carman also began to suffer from excruciating back pain—a sensation she struggled to describe. It felt like a persistent muscle spasm, haunting her throughout the day and even waking her up at night.

Despite the swift diagnosis of psoriasis, the source of her debilitating back pain remained elusive, setting the stage for a long and challenging journey toward the official recognition of her condition.

The Prolonged Search for Answers

The subsequent decades proved to be a tumultuous period for Carman as her symptoms intensified in her 20s and 30s. Remarkably, she managed to embrace motherhood and raise four children, all the while grappling with a relentless and enigmatic pain. The back pain evolved into a more comprehensive joint affliction, affecting her neck and other joints. She continued to partake in outdoor activities like hiking with her young children, running, and swimming in Lake Michigan despite the increasing pain.

Throughout this arduous journey, Carman encountered a maze of medical consultations, where various specialists offered a carousel of potential diagnoses. Her dermatologist, primary care physician, and other specialists speculated that she might have fibromyalgia, lupus, or rheumatoid arthritis, resulting in a shifting narrative of uncertainty and confusion. Each visit seemed to yield a different conjecture about her condition, leaving her grasping for clarity.

Yet, amid the uncertainty, Carman’s determination led her to delve into the realm of medical literature. She became an ardent student of psoriatic arthritis, meticulously studying the condition that had become an unwelcome companion in her life. Her knowledge grew to the point where she was able to identify psoriatic arthritis symptoms in a neighbor—a condition known for causing swollen fingers and toes. She urged her neighbor to consult a rheumatologist, and, as fate would have it, her “diagnosis” proved accurate.

The Turning Point: Finding the Right Doctor

Despite her uncanny ability to recognize psoriatic arthritis in others, Carman hesitated to follow her own advice. It wasn’t until 2002, when she was in her early 40s and settled in Idaho with her family, that she finally sought the expertise of a rheumatologist. She chose one of the top rheumatologists in the Northwest, based in Boise, Idaho. After a comprehensive evaluation, including an X-ray of her pelvis, Carman finally received the long-awaited official diagnosis. Her condition was identified as spondylitis, a form of psoriatic arthritis known for affecting the bones in the pelvis. In her case, the joints in her lower spine had fused, causing her persistent back pain.

Tragically, by the time of her diagnosis, significant damage had already occurred, a cruel reality of autoimmune diseases like PsA, where existing damage is often irreversible. Furthermore, many treatments had limited efficacy due to the advanced stage of her disease. Her pubic bones had calcified, her joints had stiffened, and she underwent cervical spine surgery and a hip replacement. Each year brought a worsening of her condition, especially during the harsh winter months when it felt like navigating through treacherous quicksand.

Advocacy and Encouragement for Others

Mollie Carman’s remarkable journey through the labyrinth of PsA has transformed her into an advocate for raising awareness about this debilitating disease. Her story serves as a beacon of hope for others who may be on a similar quest for answers and relief.

She passionately urges anyone who suspects they may have psoriatic arthritis to seek out a proficient rheumatologist. The National Psoriasis Foundation, an organization Carman actively supports, offers invaluable resources to help individuals connect with skilled rheumatologists in their vicinity. Additionally, Carman highlights the benefits of online communities, particularly Facebook groups, which can provide valuable information and peer support.

Fortunately, access to knowledgeable and specialized rheumatologists has improved significantly, making it easier than ever for individuals to find experts who understand and specialize in the complexities of psoriatic arthritis.

In conclusion, Mollie Carman’s enduring journey with psoriatic arthritis serves as a poignant reminder of the resilience of the human spirit. Her tenacity, from enduring the trials of undiagnosed pain to becoming an advocate for those facing similar challenges, underscores the importance of awareness, early diagnosis, and expert medical care in the battle against autoimmune diseases like PsA. Her story is a testament to the power of perseverance and the possibility of finding light in the darkest of times.