After 11 Years and Countless Dismissive Doctors, I Was Finally Diagnosed With Early Onset Parkinson's Disease
Parkinson's disease usually strikes older adults, so doctors didn't believe that Christina Korines, 35, had this neurological disorder. Instead, they blamed her tremors and pain on everything from anxiety to ADHD to psychosis.
This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
I remember the day my tremors started. It was 2006, and I was 22 years old. I was in the car with my boyfriend, Nick (who is my now husband). We heard a tap-tap-tap, and we immediately pulled over because we thought something was wrong with the car.
Once we turned off the car, Nick looked down and said, "Something’s going on with your leg." I looked over and realized it was hitting the car door. I was freaked out, but I was sure whatever was making my leg move like that would go away. I thought it had to do with being nervous.
At the time, I was a teacher’s aide working at an elementary school. Shortly after the incident in the car, my tremors reappeared. One of my tasks at work was to cut out letters to form the names of each kid in the class, and I realized I couldn’t control the scissors with my right hand.
At that point, I was worried. I made an appointment with my general practitioner. My doctor told me that it seemed like I had a lot of anxiety and suggested I go to a psychiatrist. I didn’t disagree. When the doctor tells you something, you trust that they are the expert.
The psychiatrist diagnosed me with severe ADHD and put me on a hefty dose of medication. I really wasn’t sure about the diagnosis—I'd always been a great student and never had trouble focusing. But again, I was convinced that the psychiatrist knew what was best, and if he was giving me this prescription, it’s gotta be real.
Yet after a few months on this medication, my tremors, which only affected the right side of my body, got progressively worse. My psychiatrist then told me I should see a neurologist. I was scared, so I held off. It wasn’t until Nick, who at this point was my fiancé, expressed concern about my symptoms that I actually made an appointment.
The neurologist immediately raised the possibility that I had multiple sclerosis (MS) and sent me for an MRI. The MRI came back perfect; there were no signs of MS. At the time, my doctor referred to my young age and joked that I couldn't possibly have Parkinson's disease. "I can’t tell you that you don’t have Parkinson’s, but you’d be in the Guinness Book of World Records if you did." He thought it was really funny. It was a foreshadowing.
After that, I dropped it for a few years. I still had symptoms, but I was tired of being dismissed by doctors and just decided to deal with it on my own. When I was 26, Nick and I got married, and soon after I got pregnant.
Once I gave birth to my daughter, however, my symptoms started worsening again. I was limping and dragging my right foot. Nick was alarmed and suggested we see a doctor who specializes in MS. I had done some research and learned that after you give birth, MS symptoms could get worse.
So, I made an appointment. I had tons of blood work done and an MRI. Everything was perfect, and the doctor confirmed I didn’t have MS…but he had a feeling I could have Parkinson’s disease. He wanted to give me a test that would require me to not breastfeed for 48 hours because the test involved an injection. I had a newborn baby, and I was terrified. I didn’t want to be unable to feed my baby, so I avoided it and didn’t go back.
Instead, I sought out another neurologist who told me I had MS. But once he did the testing, he told me I didn’t have MS. One of the doctors also diagnosed me with generalized anxiety disorder and said I should just do yoga and have lots of sex as treatment.
I remember my exact reaction to that. I replied, "Did my husband call you and tell you these things?" I made it into a joke. In my head, I thought maybe I'm crazy or losing it. So I tried to make light of it. I was defeated. The doctor was very condescending and dismissive. But I thought if a doctor is telling me this, I was like, maybe it's me. Maybe this is all in my head. She laughed at my joke, so that’s how I tried to play it off. But it was so frustrating.
I gave birth to my second daughter four years later. By now, I was starting to have falls. I was still limping so badly, people would ask me if I was in pain. My right arm stopped swinging when I walked. My speech was also affected. I was working as a teacher and the kids in my class couldn’t hear me when I spoke. My sense of smell was also disappearing. One day, Nick came home and said, ‘Chris, the house smells...I think the baby pooped. You don’t smell that?’ I couldn’t smell anything.
I had a breakdown. I was crying. I just kept saying I don’t feel right. My legs don’t feel right. Nick suggested calling a doctor who specialized in Parkinson's. He hadn’t forgotten that one of the doctors early on being mentioned it. I hadn’t either.
I live in New Jersey just outside New York City, so I Googled 'best Parkinson's clinics in NYC." NYU Langone’s Fresco Institute for Parkinson’s & Movement Disorders came up, and in October 2017, I went for my appointment. My doctor came out to meet me in the waiting room, and that gave me a good feeling. As I started walking, he noticed I was limping heavily. He said, "Christina, can you walk in front of me?" I looked at my husband and said, "Nick, that's not good." I could see it in the doctor's face, who was nodding his head as he watched.
In the exam room he started asking questions and went through my neurology history. I'd had five MRIs at that point. He told me to stop getting MRIs. He looked at my bloodwork, which was good. He pressed me about the symptoms that scared me most: the loss of smell, voice, and the swing in my right arm, and my worsening tremors.
He began testing my motor skills, and midway through asked if he could record the appointment so he could show the other doctors. I remember looking at him and saying, "you think I have Parkinson’s, don’t you?" I knew something was really wrong. Finally he said, "I’m so sorry to tell you that you have young onset Parkinson’s disease."
Young onset Parkinson's disease, also known as early onset Parkinson's disease, affects younger people, I learned. Most people diagnosed with this neurological disorder that affects movement are over 50. But about 2%-10% of people who have it are under 50, and the disease is then called young or early onset Parkinson's, states the Parkinson's Foundation. The cause isn't known, though genetics may be involved.
I didn’t believe it until I looked over at Nick. He turned bright red, and his head flew back into the wall as he started crying. I cried hysterically. I was terrified. But my doctor said, "This isn't going to kill you; it isn't going to shorten your life. You're just going to have a different quality of life. Christina, you’ve had this since you were 22. You’ve gone 11 years fighting this on your own. Let’s try to make your life a little easier."
Though Parkinson's is a progressive disease that causes tremors and stiffness and therefore makes moving more difficult, early onset Parkinson's progresses at a slower rate. That's because young people are healthier in general and also can start treatment—like medication and physical therapy—earlier.
After my diagnosis, I was put on two different medications that were both awful. I gained weight and it affected my sleep. The medicine also gave me compulsive behaviors. I would spend money on things I would have never spent money on. One night I woke up surrounded by chocolate wrappers and credit cards. I just thought, this is not for me. I can’t do this. I decided I had to find a holistic way to live with Parkinson's, with no medication. My doctor didn’t think it was the right decision, but he supported me—he made me promise that if I go back to having falls, I'd go back on the medication.
For months I was medication-free, but I did start back on the medication because my symptoms were worsening. I tried a new medication called Levodopa. At first I was super nauseous and sleepy, but within days I started to feel human again. I had little peaks and sparks of time that made me remember what it feels like to be normal. I now take it 3-4 times a day. On a good day when the medicine works appropriately, my tremors will slow down, yet they never completely disappear.
The meds also allow me to get two solid hours of walking without an obvious limp. I have better balance, I can speak louder, and my sense of smell will come back. All of the things Parkinson’s takes away get a brief reprieve. I feel exactly like Cinderella at midnight when the medicine starts wearing off. It’s like my chariot turns back into a pumpkin.
Parkinson’s comes with an unspoken mental health battle. I have anxiety, and I now take Paxil. On bad days, I speak to a therapist. I’ve also started boxing twice a week. I train like a boxer to keep my hand-eye coordination strong. For 30 minutes, you’d never know I was sick. I try to walk as much as possible, too. On days I can’t walk, my husband carries me into the gym. I’ve also started weight training—the stronger the body, the harder it is for the disease to attack.
Throughout my journey, I’ve become so thankful for the things I still have. Gratitude is very important to me. I look for the moments when I can say, "Man, this is awesome. Today I was able to zip up my kids’ jackets and tie their shoes." My faith in God and our church helps me get through it.
My diagnosis with Parkinson’s has been a long journey. I truly believe that nobody knows your body better than you. If you feel something is wrong, the most important thing to do is listen to your body. I’m not saying all doctors are wrong, but you’re allowed to get a second opinion.
I definitely don’t recommend putting off seeking treatment, but nobody is going to advocate for you as much as you. Keep fighting until you feel comfortable. I’m just so grateful people that I'm surrounded by amazing support.