Imagine living with epilepsy for 15 years, only to find out that you never actually had it at all.
That’s what happened to Judy Clarke.
At 29, the NL woman was diagnosed with temporal lobe epilepsy, a diagnosis that altered her life in many ways. Epilepsy stole the life she’d planned: the honour student had to quit school, lost the ability to drive and had to stop working.
Clarke, now 49, doubted her diagnosis from the beginning, but it wasn’t until 2019 that a doctor confirmed she wasn’t epileptic.
The hardest part, she said, is knowing she can never get back to where she was all those years ago.
“There is no getting back unless I’m given compensation for the years that they took for me, from my ability to provide a living for myself, I cannot get that back,” said Clarke.
What led to her diagnosis
In 2004, Clarke saw an ear, nose, and throat (ENT) doctor because since she was eight, she would faint every time she got a needle, suffered from headaches and dizziness. Her doctor feared she might have a tumour.
Because she was a smoker, the ENT wanted to check for polyps. a process that involves putting a tube down her nose.
“When he was placing the tube down my nose when I felt the pressure, I felt myself go weak, and it’s like the life was just draining from me, I knew I was fainting again,” said Clarke.
“It’s not new to me, because it had happened numerous times beforehand.”
Clarke said the doctor began to panic when she started to faint and called three more doctors and a stretcher to assist.
Clarke said she couldn’t talk but could hear. Someone said they could barely feel a pulse so she was rushed to emergency.
A CT scan and an EKG taken at the emergency room came back normal. Clarke said before she fainted the ENT noticed her lip twitch, so when her other tests came back normal, he thought it was epilepsy.
From here she was referred to an epileptologist, who ran an EEG and diagnosed her as epileptic.
Life changing
She was told it was a mild case of epilepsy. Although she didn’t believe it, it was the only answer that she had, so she accepted the diagnosis and began taking Tegretol to manage it.
Taking Tegretol, she explained, could lead to her getting back her license, which was important to her as she had two young kids and a third on the way.
The diagnosis changed her whole life. The Tegretol added to her dizziness, which led to a full license suspension. Because she stopped working, she had to go on social assistance.
“I wanted to work and provide for my family, my child. Now my house is falling apart around me because I can’t even afford to operate, I can barely afford food on my table,” said Clarke.
It even impacted her ability to be a mother. She couldn’t be there for her kids the way she hoped. It also impacted her relationship with her husband, as the two live separately; her husband was injured and they can’t afford to live together.
“This has put so much stress on us,” said Clarke.
Started questioning diagnosis
Although Clarke didn’t believe the diagnosis, it wasn’t until 2006 that it was confirmed after she passed out from a medical procedure.
“I was very frustrated, I told numerous doctors that I did not believe the epilepsy diagnosis,” said Clarke.
“I was consistently told that the doctor who diagnosed me was the specialist, and he would know because he studied it, so I was belittled and undermined for years.”
But Clarke said she had to continue on the way she was living because no doctors believed her.
In 2019, after open heart surgery, she started experiencing muscle twitches in her face, hands and feet. Clarke went to a walk-in clinic in Carbonear, where the doctor believed she was showing MS symptoms and ordered a CT.
The CT once again came back normal. She asked to be referred back to the doctor who first diagnosed her to get to the bottom of what was happening.
Clarke’s referral was sent three times, and each time it was misplaced. When it finally went through, there was a three-year wait.
So she and her husband started waiting outside the Health Sciences Centre in St. John’s in hopes of one day catching a neurologist — and one day, they did.
“She dug out the EEG from 2004, and she told me there’s nothing on that that indicates epilepsy,” said Clarke.
The only thing Clarke felt was relief.
“I had told so many doctors over the years that I don’t believe this diagnosis, and here’s the doctor standing in front of me saying this diagnosis is not right,” said Clarke.
“I was finally being believed.”
Clarke soon found out that the only wrong with her was her twitches, which were brought on due to the stress she experienced from the health-care system.
Another battle
Her battle didn’t stop there — it took nearly five years for doctors to remove the epilepsy diagnosis from her medical chart. Clarke had to avail of a doctor out of province who wrote a letter to see it removed, as the only doctor who could remove it was the one who diagnosed her.
In July 2024, it was finally taken off her chart, but it didn’t give back what the misdiagnosis had taken from her. She credits her children for helping her get through her challenges.
Clarke said when she looks back on that appointment in 2004, the only thing she believes led to the misdiagnosis was negligence.
“The doctor was way too quick to grab that prescription pad and write out a prescription for Tegretol. The first time I had seen him, he prescribed me that,” said Clarke.
“There was no follow-up, no let’s wait and see if this happens again, no going back over my history and seeing that I had fainting episodes since age eight.”
Clarke said that there needs to be an oversight when it comes to diagnosing someone through an EEG.
“There’s nobody else here to go over his work, maybe there is now but at the time he was the only one. And since he was the only one here, he got all the say,” said Clarke, who has thought about pursuing legal action but hasn’t found a lawyer willing to take her case.
“I can’t help but wonder how many people he did that to besides me?”