Before She Was Diagnosed With Multiple Sclerosis, This Dancer and DJ Saw 14 Specialists
It took three years and countless doctors and physical therapists for Diane Palaganas, 36, to find out what was really causing the leg tremors and weakness that made it increasingly difficult to continue her dancing career.
This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
Diane Palaganas has been a dancer for most of her life, focusing on hip hop and modern dance and teaching dance in her hometown of Long Beach, California. So when she developed unusual symptoms in her leg in 2013, she wrote them off as a dance injury.
“It started off with tremors and weakness in my right leg,” she tells Health. Palaganas, now 36, also experienced a slight foot drop, a condition marked by difficulty lifting part of her right foot. But she was “pretty athletic” with some of her dance moves, she says, and so she initially assumed her symptoms were the direct result of a move she did where she dropped onto her knee. “I thought it would eventually heal in a couple of weeks. However, it never really went away,” she explains.
When the symptoms in her leg persisted, Palaganas decided to see a chiropractor. “I heard adjustments could help,” she says. Afterward, though, she didn’t think anything had changed. So she went to an orthopedic doctor, who ordered an MRI on her knee.
The MRI showed she had tendonitis (inflammation of the tendon), and she was given a corticosteroid injection to try to help with the tremors and weakness in her right leg. But the foot drop continued, so she decided to see a podiatrist. There, she was told she likely had nerve damage and was referred to more doctors, including a neurologist.
The neurologist performed an electromyography (EMG), a diagnostic test that uses electrical activity to measure the health of muscles and the nerve cells that control them. “He said things were fine,” recalls Palaganas, who continued to feel pain in her leg. “So I continued to bounce around to other doctors looking for pain relief.”
From there, Palaganas was advised to seek physical therapy. One physical therapist diagnosed her with plantar fasciitis, inflammation of the ligament that connects the heel to the toes. She was given a boot to wear at night, along with therapy sessions. “I wasn't seeing any results, so he asked if I wanted to see a doctor with a more aggressive approach,” says Palaganas. “I was desperate for any answers and pain relief, so I saw a new doctor.”
That doctor, a foot and ankle specialist, said she had scar tissue around her ankle and recommended that she undergo an ankle arthroscopy, a surgery that used a tiny camera and surgical tools to repair the tissues inside her ankle. Palaganas opted for the surgery.
“I was desperate after searching for so long; I thought this would be the answer," she says. "It wasn't." She ended up “bouncing around from doctor to doctor,” until she finally saw a physical therapist—her fourth—who had an intriguing theory.
He suggested that she might be experiencing symptoms of multiple sclerosis (MS), a disease of the central nervous system that causes the immune system to attack myelin, the sheath that wraps around nerve cells. This interrupts messages the brain sends to the body. Depending on the nerves that are affected, the symptoms of MS can vary widely, but common signs include extreme fatigue, numbness and tingling, vision problems, and weakness or balance issues. MS affects an estimate one million Americans, and there is no cure.
Palaganas was referred to a neurologist to get another MRI—this time of her brain. A brain MRI is a common tool used to diagnose MS. At that point, “I knew this was more serious than I expected,” she says.
The MRI was the tipping point that led to a diagnosis: Palaganas had MS. It took three years from the onset of symptoms until she finally found out what was wrong. “I was in shock. I felt like I lost control of everything in my life,” she says. “I thought it was a death sentence. I thought I was on my way into a wheelchair. I went through all the stages—sadness, anger, denial, and eventually, acceptance.”
By the time of her diagnosis, Palaganas had been through two primary-care doctors, three chiropractors, three podiatrists, four physical therapists, and two neurologists. “I think it took so long because my doctors were treating secondary symptoms,” she says.
“Very frustrating” is how Palaganas sums up her experience with the medical community. “I did not know who to listen to or who to trust,” she says. “I was frustrated with the lack of testing. I remember going to each doctor and filling out a bunch of paperwork. Then going over my paperwork, answering a bunch of the doctor's questions, and then hearing their ‘professional’ opinions on what they think the problem was.
"I think there should have been more extensive testing," she continues. "I should have received my MS diagnosis at least within my first year of symptoms, maybe even earlier.”
Palaganas is especially frustrated that the first neurologist she saw didn’t even consider MS as a possible diagnosis. “I think my first neurologist should have done more testing to rule out any major diseases,” she says. "I definitely do believe if I had known earlier, I could have prevented some of the progression." The course of MS is different for everyone who has it; some people have symptoms that flare up and disappear, while others find that symptoms progress and become more debilitating, affecting them physically, psychologically, and/or in terms of cognition.
Despite treatment with meds, her MS has progressed, forcing her to stop dancing and leaving her job as a dance instructor. “Dancing was my whole life. It was a way for me to express myself, release anxiety, and exercise,” she says. “It was my career and livelihood. It was how I connected with other people. Dancing brought me joy and was my connection to true freedom.”
Palaganas says having MS affects her day-to-day life, too. “It is getting harder and harder for me to walk for long distances,” she says. “I can stand for a good 20 to 25 minutes before spasticity kicks in, and I am dragging my body everywhere.”
Everyday life has become more of a challenge with MS. Palaganas struggles to go to the store because of all of the walking required, and she has difficulty socializing with friends because that often requires lots of standing and walking. She's only able to work part-time and was denied disability benefits.
Meanwhile, a new career has emerged: DJing, which Palaganas really enjoys. “It is a way for me to express myself and work with music without having to jump around as much,” she says. “Even though it does not give me the same kind of joy that dance used to give me, it does come pretty close.”
Now, Palaganas says, she’s “living each day in the moment [and] some days are easier than others.”
“I am hoping to see a cure [for MS] in this lifetime—something that would reverse the damage so I can be active once again,” she says. “In the meantime, I will continue fighting and continue living life the best way that I can."
If you have a story to share about being misdiagnosed, email us at firstname.lastname@example.org and join our Misdiagnosed Facebook community to talk to women who share the same struggle.