You look fine. Your doctor is stumped. But this disorder is leaving millions 'a hot mess'

Mark Johnson | Milwaukee

MILWAUKEE – Corey Sukalich doesn’t look terribly ill, and sometimes that’s the worst part. On the outside, he looks quite normal.

The truth, he says, is that “most things inside me are a hot mess.”

Sukalich, a 36-year-old former electrical engineer from Wisconsin, suffers from a stealth disorder, hard to spot and unfamiliar even to many doctors.

His head pounds from frequent migraines. His body aches much of the time. He sweats by just reading a book.

There are months in which he vomits every single day, the clearest sign of something amiss in his body. Yet vomiting is such a common symptom, a sign of everything from flu to stress.

In Sukalich's case, the symptoms mystify many doctors, some of whom have said they can find nothing wrong with him.

“I’ve had a doctor tell me to try harder, basically, ‘Suck it up,’ ” he says, adding that it was years before doctors put a name to his “invisible illness.”

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A deceptive disorder

The name, dysautonomia, is an umbrella term that covers various disorders afflicting an estimated 70 million people worldwide.

Between 1 million and 3 million Americans suffer from a single dysautonomia condition called POTS (for comparison, that condition alone is more common than multiple sclerosis). Among other symptoms, POTS causes chest pain, dizziness, fainting, abdominal pain and a racing heart.

Many wait years to learn they have dysautonomia, and it is very likely many live out their lives never knowing they had it.

“Dysautonomia is probably significantly more common than we realize,” says Jeremy Cutsforth-Gregory, a neurologist at Mayo Clinic in Rochester, Minnesota. “I think it’s significantly underdiagnosed.”

In about half of POTS cases, he adds, the patient’s disease grows out of the immune response to an infection.

Ryan Cooley, a doctor and co-director of the Dysautonomia Center at Aurora Medical Center in Grafton, Wisconsin, says detecting the disorder is especially challenging because “typically there isn’t a dominant symptom or physical finding.”

Perhaps the most common clue to the disorder is that patients find that when they stand up from a chair their heart races and they feel lightheaded.

“Patients can look good on the surface, but not work well – just like our smartphones,” explains Robert Wilson, a neurologist at Cleveland Clinic who has been studying dysautonomia for the last 20 years.

Identifying the disorder often requires a patient’s medical history, a physical examination and a timeline of when different symptoms first appeared. Sometimes doctors use what is called a tilt table test to determine the cause of fainting spells. The patient lies on a bed that is then tilted at different angles from 30 to 60 degrees while machines measure changes in heart rate and blood pressure.

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'No one believed me. I’m so glad you believed me'

Wilson said that the illness often seems to strike people who have survived a previous health trauma, such as cancer treatment or an organ transplant. (Sukalich recalls two bouts of severe food poisoning in his teens that might have served as triggers).

“Your body is like a house,” Wilson explains. “The disease is like a fire and now you are living with the smoke damage. Dysautonomia is the smoke damage. It affects a very delicate system.”

The system affected is called the autonomic nervous system. The nerves involved allow the brain to direct the body through many tasks that, while critical to life, are carried out without our having to think about them.

These tasks include regulating blood pressure, heart rate, body temperature, digestion, urination, defecation and the production of the bodily fluids used in swallowing and sweating. Although a person’s heart rate rises when they stand up, the autonomic nervous system ensures that the rate returns to normal rapidly.

How exactly the system works and why it breaks down is not well understood.

“There’s a huge knowledge gap,” says Cooley at Aurora Medical Center in Grafton.

He adds that “wait times to attain an accurate diagnosis are shrinking, but they are still on the order of years.”

“I see patients with autonomic dysfunction. Every day I hear someone say, ‘No one believed me. I’m so glad you believed me,’ ” says Cutsforth-Gregory at Mayo Clinic.

Cutsforth-Gregory hopes researchers will be able to help primary care doctors by developing algorithms that pick up the patterns of symptoms associated with POTS and other forms of dysautonomia.

Although there is no cure for dysautonomia, doctors can treat individual symptoms. They recommend, for example, drinking more fluids, boosting salt levels and wearing compression clothes that fit tightly over the body and prevent blood from pooling in the abdomen and thighs. Blood pooling can cause the lightheadedness, fainting and low blood pressure that patients experience.

Confirmed four years after symptoms started

Mark Martin, a Wisconsin father of two, said that he began suffering dizzy spells, migraines and cramping in 2014. His doctor at Aurora Medical Center in Summit, Wisconsin, took detailed pictures of his brain using magnetic resonance imaging.

As Martin remembers it, the doctor looked at him and said, “Still can’t figure it out.” Martin was eventually referred to Aurora’s Dysautonomia Center in Grafton. It wasn’t until around February 2018, he said, that the diagnosis of dysautonomia was confirmed.

Last spring, the condition almost caused a serious injury while he was working on a gear cutter machine at his employer.

“I put a part in the machine and I backed up, then all of a sudden I stepped forward and the room started spinning,” he says. “I fell into the machine. If I’d have gotten my hand in there the machine would have ripped my hand right off.”

Martin moved to a safer job at the company.

His daughter, Natalie, was diagnosed with POTS three years ago at age 16. He said both of them have had the experience of describing their symptoms to people who did not believe them.

“That’s how I ended up in Roger’s Hospital,” he said, explaining that he went to the mental health and addiction treatment facility after becoming suicidal.

“I was ready to leave work and crash my car and just not be here anymore.”

Martin said he takes medications to deal with his migraines, cramps and nerve pain.

The medications do not get rid of all the pain but do help him feel better.

In his new job, Martin uses an enclosed machine to grind down steel or brass burs. The job is safer but requires that he work on his feet for eight to 10 hours a day. At night, he comes home and collapses onto the couch.

His condition has strained his marriage, he says. His wife, Carol, must cook, clean, mow the lawn, do almost every household chore, even though she works 10-hour days handling accounts receivable for an area company.

“I see what she’s saying,” Martin says of his wife. “She does it all.”

Sukalich said that experiences with disbelieving doctors led him to give up on traditional medicine for a full decade ending in 2011. By then he was unable able to work regularly.

When he applied for Social Security Disability Insurance more than five years ago, he was required to submit to a psychiatric examination, something that is not required of all applicants, but “done when there is insufficient, evidence, or we need to resolve a conflict, inconsistency or ambiguity,” according to a Social Security spokeswoman.

Sukalich says his application for SSDI has been rejected at three levels.

“I was having daily migraines and waiting for a neurology appointment with a migraine specialist,” Sukalich says.

“I was not able to be reliably on time and between that and sick days when I wasn’t able to come in at all, that was a significant problem. Daily tasks like showering were taxing, and I wasn’t able to safely drive every day due to being disoriented from migraine medications.”

It wasn’t just the sick days that made it impossible to hold onto a regular job.

In July, Sukalich decided to count the medical appointments he’d gone to so far in 2019.

The number was over 50.

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