Meet Brandi Burns: Fighting for the Right Diagnosis

Recently, we participated in the Women 4 Wellness event aimed at increasing health awareness and healthy behaviors among the community in the Flathead Indian Reservation and Lake County, Montana. Here, we met Brandi Burns, who shared her story of fiercely advocating for herself from the time her symptoms began all the way through her diagnosis.

At 26, Brandi started experiencing extreme pain in her sacroiliac (SI) joint, making it debilitating to stand. The pain caused multiple near-fainting episodes, leading to two separate urgent care trips. During the first one, Brandi was barely examined. “The physician assistant (PA) didn’t so much as lay a hand on me, and just sent me home with a steroid, muscle relaxers, and a referral for physical therapy.”

Two weeks later, she returned to the same urgent care with the same pain and no improvement. This time, a different PA had her do a few stretches before concluding Brandi was experiencing nerve pain, and again sent her home with more muscle relaxers and high-dose pain medication. When she consulted her primary care physician (PCP), Brandi was told to try the medications prescribed in urgent care.

Brandi faced a challenge that many autoimmune patients experience: her pain and symptoms were invisible. This made it much harder to be taken seriously by providers and diagnosed by doctors as she was constantly told she was “too young for it be anything serious.”

Brandi became frustrated. “When you hear the same discouraging statements not only from medical professionals, but also from your coworkers, family, and friends, it’s really hard to not believe them. You almost have to check in with yourself and ask, ‘is this really happening to my body? Am I describing it right to other people? How can I be seen, heard, diagnosed and treated if nobody even believes that I’m sick?”

Things took a serious turn when Brandi experienced a full fainting episode, which finally prompted her medical team to take her condition seriously. She was rushed to the ER, where they quickly arranged an appointment with her PCP. The PCP confirmed that she had extreme weakness in her left leg and several numb areas in her upper thigh. A spinal X-ray revealed a disc protrusion on her right side, but her doctor did not believe this was the sole cause of her symptoms. Consequently, Brandi was referred to a spine and pain specialist out of town without any further tests to confirm or eliminate other possible diagnoses.

Shortly after, Brandi’s toes began to turn purple, blue, and even black. Her PCP referred her to a walk-in clinic, where she was diagnosed with Raynaud’s syndrome.

Although Brandi followed the treatment plan for Raynaud’s, the discoloration soon spread from one to three toes. She returned to the clinic, where she was told to continue the plan and to just be patient. Brandi mentioned that the coloring in her foot improved when her foot was elevated, and got worse when it was on the ground in a seated position. The PA marked this in Brandi’s chart, stating that it was interesting, but she didn’t have time to investigate it.

However, Brandi says that this was actually a stroke of luck: With discolored toes, Brandi now had a visible symptom.

Soon, at a routine gynecological exam, the nurse noted that Brandi “looked like she felt miserable.” She was limping and in pain, and the nurse doubted the Raynaud’s diagnosis. She recommended that Brandi make an appointment with a specialist. This simple interaction left Brandi in tears because this was the first time she was not only listened to, but taken seriously.

During her first appointment with the specialist, the doctor examined Brandi’s toes, observing how the discoloration changed with elevation. She checked Brandi’s blood flow using a Doppler and wasn’t happy with the results. Brandi then underwent an ABI test to assess circulation and an ANA test to rule out Raynaud’s. The ABI results were mostly normal, except for a dip in blood pressure in her upper left thigh, which was thought to be due to inflammation. She was immediately put on anti-inflammatory medication and had to try several options before finding one that worked. Within a few weeks, she regained almost full strength in her leg, but she continued to suffer from severe pain.

Brandi was then referred to a rheumatologist after her ANA test came back positive with high SSA antibodies. It was then that she was informed she might have lupus, Sjögren’s, or another autoimmune condition. To help with inflammation and pain, she received injections in her SI joints, as the doctor believed her pain was related to connective tissue. Unfortunately, it took about three months to get an appointment with the rheumatologist, and during this time, her symptoms worsened. She began experiencing knee pain and swelling after short walks, and her hands weakened, making it difficult for her to perform simple tasks, like opening a juice bottle for her daughter.

At her first rheumatology appointment, the doctor checked all of Brandi’s joints and conducted a wide range of blood tests. She was diagnosed with a connective tissue disease and possibly lupus. Once her bloodwork results came back, the doctor informed her that they would treat her for lupus, but they couldn’t be certain it was lupus until the medication proved effective in reducing her symptoms.

Brandi has been undergoing treatment for lupus for nearly four months and feels like she has her life back. She can now run and keep up with her daughter with little to no pain.

From initial dismissal to a Raynaud’s diagnosis to an ultimate lupus diagnosis, Brandi was steadfast in her determination to get the right answer.

Brandi said, “If I were to give one piece of advice to anyone dealing with something similar, it would be to keep going back. Even when you feel like you’re going crazy, keep going back. Consult different doctors and get different opinions. Nobody is perfect, even medical professionals. You have to keep advocating for yourself. If you feel something is wrong with your body and you’re not being heard, speak up. Say it louder. Repeat it to anyone who will listen.”

Brandi concluded by saying, “I needed an answer not just for myself, but for my brand-new baby at home. At the time, I couldn’t give her my best, which motivated me to seek answers and get better. I wouldn’t change anything about my journey because every step led me to where I am now. It taught me to stand up for myself and question the professionals I once blindly trusted, saying, ‘Wait, no, this isn’t right.’”

Today, Brandi is focused on moving forward. “I’m thankful for parents who raised me to stand up for myself, hopeful for the long, happy life I’ll have with my husband and daughter, and grateful for the amazing life I fight for every day. No matter what symptoms come, I know I have the strength to listen to my body and speak up for myself.”