Tardive Dyskinesia: My Diagnosis Journey

Medically Reviewed by Brunilda Nazario, MD on November 21, 2025
6 min read

Margaret Berry, 69, was diagnosed with tardive dyskinesia in late 2024. Here, she discusses the challenge of getting a diagnosis and what she learned along the way.

I was shocked by my TD diagnosis in 2024, but I was also relieved. Finally, I had some answers for the strange symptoms I'd noticed for a few months. Oftentimes, a diagnosis of TD can be a challenge, but I was lucky to work with a doctor familiar with the condition. Here's my story and what I learned. 

The first early symptoms of my TD were very subtle. Initially, I noticed that my feet would just go, go, go when I sat in my living room recliner or lie in bed at night. 

They refused to stay still. Then my fingers began to do funny things. I couldn't stop them. It was like they had a life of their own. They wanted to move around all the time. 

I've always experienced what seemed to be mild tics. When I drive, for example, I have the urge to constantly look over my shoulder at the passenger seat's headrest. But I never had anything like my TD symptoms.

I was particularly concerned about my symptoms because they interfered with my job – I'm a sign language interpreter at a local elementary school. My pointer finger would wag up and down when I signed for my student. The kids in the classroom like to copy my gestures, so they'd imitate me whenever it happened. That made me aware that it was going on almost all of the time.

I went to my primary care provider and told her that my fingers and feet were moving involuntarily much of the time. They were fine when I walked or stood, but as soon as I sank down into my recliner after a long day of work or got into bed, they'd start to dance. It became hard to rest or relax. She initially diagnosed me with anxiety, but when the symptoms didn't improve after a couple of months, she referred me to a neurologist.

 

 

 

 

I was lucky that my primary care provider referred me to the head of neurology at a local hospital. But my first visit wasn't a good experience. A female nurse practitioner evaluated me first. Her behavior was odd. It felt like she didn't believe me, like she thought I was faking my symptoms. 

She said to me, "I am certainly not going to give you medication for this. You need to dig deep within you and figure out why you are doing this." 

I just looked at her shock. It seemed pretty clear to me that I couldn't control my body's movements.

She left the room, which was fine, as I never wanted to see her again. Then the neurologist walked in. Thankfully, he was much more compassionate and supportive. He asked me questions about my life – what I did, if I had any other health problems, what I liked to do as hobbies. Since my feet hung over the edge of the exam table, they were doing their thing. He said, "I notice your feet are moving. Can you stop the movement at will?" I said yes, but my feet naturally began to do their dance again as we continued the discussion.

 

 

After about a 30-minute casual conversation, he told me that he thought I had TD. He explained to me what the condition was and how it was most likely caused by the mental health medications I'd been taking since my 50s to treat bipolar disorder. He reassured me that I hadn't caused my TD and that he knew I wasn't doing the movements deliberately. That was a relief to hear after my experience with his nurse.

My neurologist explained that while he couldn't cure my TD, he could prescribe medication to help with symptoms. I'm currently on a type of drug called a VMAT2 inhibitor. It blocks a substance called the VMAT2 protein, which helps lower the amount of dopamine in your brain and decreases involuntary movements. 

I take two pills in the morning and one at 4 p.m. when I get home from school. After about three months, I saw a big improvement in my symptoms. While my feet still move around when I sit or lie down, my hands have stopped. To be honest, it's helped me manage my TD much more than I expected. 

 

 

I spend my days with fourth graders. I absolutely love my job. I've been a sign interpreter for the same deaf student since they were in first grade. There are 150 kids in their class, and I know the names of them all. 

I haven't yet had to explain my TD to them since the medication has done a good job of controlling my finger movements. The few times it has come up, I've just joked that I have dancing feet and hands. My kids love to copy me. They think it's fun and a game, so I'm always mindful to watch them for signs that my symptoms are worsening again.

I do talk about my TD diagnosis to my two sisters. Sometimes when I visit them, I sleep in the same bed, and they'll let me know if my feet keep them up with kicking. They say it's gotten a lot better since I've started medication. 

But besides that, my life seems to have returned to what it was like before my diagnosis. I'm not connected with a support group, but I did meet another woman with TD at my church. One day I noticed she was wearing a T-shirt that advocated for TD awareness. I introduced myself and struck up a conversation. I found it helpful to talk to her, to hear her diagnosis story and what she does to manage her TD. 

 

 

If you're on medication that raises your risk of developing TD, like some mental health medications, make sure you, your primary care provider, and your psychiatrist are all monitoring you for symptoms. I'm glad my primary care doctor listened to my concerns and quickly referred me to a neurologist. I didn't have to wait months or even years for a diagnosis. I do think it's important for people who suspect they may have TD to get evaluated by a specialist in movement disorders, like a neurologist. Mine recognized the signs right away since he sees them relatively often.

I'm also a big proponent of medication. When my neurologist suggested treatment right after my diagnosis, I followed his advice. I'm a believer in drugs if you need them, whether it's to manage high blood pressure, elevated cholesterol, or your mental health. In this case, medication to treat my TD really enhanced my life. 

But all medications come with side effects, so make sure you discuss those with your doctor. My neurologist did mention that one side effect of the VMAT2 drugs could be depression. When I started to notice that I felt down in the afternoons, I told him right away and he decreased my dose slightly. That did seem to help. 

Finally, there is hope if you're diagnosed with TD. When my neurologist explained that there was a treatment, the first thing I did was smile. Although, thanks to my TD, it was slightly crooked. Diagnosis is a key part of the puzzle, but so is treatment. Both will make a real difference in your life.