By For years, Tara Zier sought the help of multiple specialists in coping with what she describes as a vise-like tightening sensation in her chest and chronic pain in her neck. It was frustrating for her – diagnostic tests kept coming back normal, and, for a while, it seemed as if no one could provide the diagnosis or relief she was looking for.
She remembers being dismissed repeatedly by her doctors, who mostly brushed off her pain as symptoms of severe anxiety. It wasn’t until one of these specialists stopped and really listened to her concerns that she discovered the true underlying cause of her condition.
“It’s more of an invisible illness,” said Zier. “If you looked at me, you wouldn’t know I had it.”
Life Interrupted
As a highly respected dentist in Northern Virginia, Zier says her symptoms first appeared after her former husband, David Zier, committed suicide in 2014. Their children were just 11 and 13 at the time, leaving Zier searching for answers as to why her husband would take his own life.
The tragedy led to numerous investigations into David Zier’s wealth management firm. In 2016, the U.S. Commodity Futures Trading Commission ordered the company to pay $800,000 on charges of fraud, claiming that Zier falsely inflated the value of a private fund to defraud investors and clients out of their money.
After his death, Tara Zier initially attributed her pain to grief and anxiety. She recalls a particularly stressful day driving home with her kids after a snowboarding trip in Vermont when she had to pull over to the side of the road after feeling short of breath and dizzy. She went to a nearby hospital where she spent four days and was diagnosed with pneumonia.
However, that was just the start of a long and painful journey to recovery. From 2015 to 2017, she sought the help of several specialists who examined her heart, brain, lungs, and spine, but ultimately found nothing that would lead to answers.
Concerns Dismissed
In 2016, Zier started taking behavioral cognitive therapy, which she describes as helpful. She also tried physical therapy, which made her feel worse. An anesthesiologist injected steroids in her neck to help relieve the pain, but it didn’t do the trick. Her results from the cardiologist, neurosurgeon, and otolaryngologist all came back normal.
She says her internist “blew it off,” and told her to take an antidepressant to help cope with her husband’s death. In 2017, the doctor noted Zier was “very anxious about her health and fears she will have a catastrophic illness.” She agrees with that statement, but the medication wasn’t helping.
Zier says many doctors doubted her condition was physical, often attributing it to anxiety and poor mental health.
The stress of raising her children single-handedly was clearly part of the problem. She remembers telling herself, “Nothing can happen to me,” or her children would be orphans.
Some months later, an ER doctor prescribed diazepam, valium, and a short course of corticosteroids.
“I actually felt better,” Zier said about the experience, but as soon as she stopped taking the drugs, her pain returned.
A second cardiologist and a psychiatrist both once again told her she was suffering from chronic anxiety. The psychiatrist even noted her plethora of doctor’s appointments and told her to consider spending time “not being a patient”.
Zier knew she had anxiety, but she found the psychiatrist’s comments insulting and infuriating. “I’m not dismissing a mental health issue at all,” Zier said, “but there was something wrong with my body.”
By March 2017, she stopped practicing dentistry to focus on her health. A new primary care doctor was sympathetic about her pain, but couldn’t diagnose her condition. An endocrinologist, radiologist, and specialist all treated her for a disorder of the autonomic nervous system.
Stiff-Person Syndrome
In October 2017, her symptoms got worse with increasing vertigo and the left side of her face went numb. That’s when her internist sent her to a neurologist.
“I thought he was going to blow me off,” Zier recalled, “but he listened to me.” The doctor ordered an MRI and a series of blood tests.
The neurologist measured the level of antibodies to glutamic acid decarboxylase (GAD), a protein used in the production of a neurotransmitter known as gamma-aminobutyric acid (GABA), which helps control muscle movement and the regulation of anxiety.
Doctors often use this test when treating diabetes, epilepsy, and the detection of a rare condition known as stiff-person syndrome (SPS), which causes alternating rigidity and painful muscle spasms in the neck and spinal cord along with heightened sensitivity to stress, noise, and other stimuli. People with SPS often have lower levels of the GABA neurotransmitter.
According to the specialist, tests showed her GAD65 antibody level measured 25,000 units per milliliter (U/mL); normal is less than 5 U/mL.
He said he believed she had SPS, a condition he’d only seen once before during his 40-year career. The neurologist prescribed a valium and a muscle relaxant, both of which are commonly used to treat SPS.
“I was relieved I had a diagnosis, but scared about what it meant,” Zier said.
People with SPS often have poor posture. In some severe cases, they may be too afraid to leave their homes, as certain sounds and stimuli may trigger muscle spasms. It was first discovered in 1956 and affects around one in one million people, most of which also have an autoimmune disease, such as Type 1 diabetes.
In this case, Zier’s SPS was brought on by Grave’s disease, an autoimmune disorder that causes hyperthyroidism, or an overactive thyroid. The body’s immune system attacks the thyroid, which causes it to make more hormones than the body needs. It affects around 1 in 200 people, according to the National Institute of Health.
Living with Her Condition
Multiple tests confirmed the diagnosis. She was treated at Johns Hopkins’s Stiff Person Syndrome Center, considered the only facility of its kind in the world. Scott Newsome, the center’s head neurologist, says, “Early on, people are dismissed and it’s thought that they have a mental health issue or are exaggerating,” while noting that long-standing anxiety appears to be intrinsic to SPS.
While Zier doesn’t have as severe of a case as others, Newsome notes, “most people [with SPS] are disabled and their lives are turned upside down.”
With continuing treatment, Zier says she’s feeling better. Even though “every day is a struggle,” she said, “I’m happy I’m breathing and that my dog’s on the couch with me.”
Ultimately, she remains troubled by how she was treated by the medical system. “The stress that goes on with a diagnostic odyssey is unreal,” she said. “I’m not an easily offended person, but to be dismissed over and over was very tough.”
