The challenges of living a normal, active life while managing multiple sclerosis.
After her right eye became blurry, Jenny Leonardis thought simply increasing the strength of her contact lens prescription would solve her vision problem. But after months of visiting different physicians and undergoing countless tests, the 31-year-old Milltown, NJ, resident would learn that the cause of these difficulties was actually multiple sclerosis (MS).
“I thought that I was dying,” Leonardis said. “I had no idea [what MS was], no one in my family had it, and I didn’t know anyone who had it. I pretty much thought that I would eventually be in a wheelchair, disabled, and not live very long.”
The onset of disease in Leonardis, who teaches reading in an elementary school and coaches CrossFit, was blurred vision in the right eye followed by the numbing and tingling of her fingers. Leonardis also experienced numbness in her right leg that had a “heavy” feeling to it, and her vision continued to worsen.
Because there is not just one test to determine if an individual has MS, it took nearly half of a year for Leonardis to receive a diagnosis. To rule out different conditions, Leonardis went to a neurologist, ophthalmologist, optic neurologist, and even an infectious disease physician.
“It was extremely stressful,” Leonardis recalled. “I’ve seen every single doctor you could think of and went through every test. They thought I had Lyme disease or a tumor in my brain, cancer, AIDS, everything you could think of, they tested for.”
An MRI was performed on her brain, but the results came back free of lesions. Months later, Leonardis saw an optic neurologist who told her that MS lives on the spine, as well. After undergoing yet another MRI, doctors found that she had lesions all down her spine.
“At that point, they were 99.9% sure I had MS,” Leonardis said.
To confirm, the physicians gave her a spinal tap. A lumbar puncture or spinal tap is a procedure that involves the collection of a small sample of cerebrospinal fluid from the thecal sac that surrounds the spinal cord. Certain changes in the cerebrospinal fluid indicates an abnormal immune response within the central nervous system, which can help diagnose MS and other diseases.
Leonardis was officially diagnosed with MS in 2013. She was started on treatment with intravenous steroids for 3 days to help alleviate some of the symptoms. About a month later, she began treatment with Copaxone (glatiramer acetate injection).
At the time, Leonardis had to inject herself with the drug each night, rotating to different sites of her body. But it was a challenge getting used to injecting the drugs herself.
“I hate needles, I hate anything with blood,” Leonardis said. “I actually had a nurse come to my house and she trained me through it. Four years later and I still cringe every time I do it.”
Since starting treatment with Copaxone, Leonardis drug regimen has changed and she no longer takes the 20 mg dose once per day. In 2014, the FDA approved the 40 mg dose of Copaxone to take just 3 times per week. Leonardis experienced little to no adverse events from Copaxone.
“I had site reaction where my skin would get really red, but that’s kind of gone down. Other than that, I’ve had no side effects,” she said
Initially, Leonardis’ family members and her husband John had similar feelings to her own regarding her diagnosis due to the unfamiliarity with MS. Fears included the unknown of what was going to happen, and whether Leonardis would end up disabled. But as their knowledge grew, the fears subsided.
“The more we were educated about MS, the more we learned it was definitely manageable,” Leonardis said. “It’s not as scary as everyone thinks. I have a really good support team—–my mom, my sister, and John––they all come with me to the doctor all the time. The more we were educated, the less scary it was.”
Every 3 months, Leonardis goes for a checkup, and every 6 months to a year, she receives an MRI.
“That’s kind of been consistent for the last 4 years,” Leonardis said.
The trajectory of Leonardis’ disease and whether she will eventually be confined to a wheelchair is unknown, but because she has not relapsed, her physicians believe the medicine is keeping her stable.
“There is really no way of knowing,” Leonardis said. “They think the medicine is working and that it’s keeping it stable, but it could also just be pure luck at the same time. There’s really no way of knowing. I could wake up tomorrow and not feel my legs, and that’s it, I’m disabled. Or I can live my entire life and be the same exact way. My doctor says when I’m 90 and I have a cane it’s because I’m 90, not because I have MS. I just have to live day by day.”
Leonardis stays positive by knowing that it could always be worse.
“I feel good for what I can feel good for,” Leonardis said. “My 100% is not your 100%, but I know this is the best I can feel with my situation. I’m also not really limited, so that helps me stay positive too. I can still teach every day, workout, and enjoy things that normal people enjoy.”
Accompanying her MS diagnosis were lifestyle changes, such as dealing with an overactive bladder, learning to reduce stress levels, and keeping cool during the summer. According to the National Multiple Sclerosis Society, bladder dysfunction occurs in approximately 80% of patients with MS. It is caused by lesions that block or delay the transmission of nerve signals in areas of the central nervous system that control the bladder and urinary sphincters.
“I have an overactive bladder, so I’m cautious of where the bathrooms are anywhere I go or how often I use the bathroom at work,” Leonardis said. “If I don’t go like every 2 hours, it’s coming out. Probably the biggest change was my nutrition, cleaning my diet completely. I try not to have any gluten or dairy, and I try to stay away from liquor, just because any of those leave me feeling kind of gross.
“Stress was another big thing. I try not to get stressed out at all, because the second I feel stressed all the symptoms come out. I try not let things bother me and live stress free. It’s hard, but I try.”
Another common issue among individuals with MS is sensitivity to heat. When the weather is very hot or humid, many patients will experience a temporary worsening of symptoms, or can even run a fever.
“I try to stay cool, so when I’m working out I put ice packs on me immediately,” Leonardis said. “In the summer when I’m at the beach, I’ll bring ice packs and cold water, or sometimes I’ll dampen a towel and keep it on my neck. Anytime I feel overheated, my symptoms come out.”
Leonardis first began crossfitting in 2010, and in 2012 her husband John would become co-owner of a CrossFit gym in Central New Jersey. But once she received her diagnosis, Leonardis said that she thought her “CrossFit days were over.”
Fortunately, Leonardis is still able to work out, but has had to make some adjustments, particularly because fatigue is a common symptom.
“I work all day and then I come to the gym and work out,” Leonardis said. “I have to be aware of when my body is tired. It’s limiting like that, but it also makes me feel better at the same time. I can’t imagine not doing that, I think it helps my muscles if anything.
“During CrossFit, I’m limited in a few things like running,” Leonardis said. “It’s hard for me because my right leg still has a heavy feeling. Box jumps and running are hard for me. If someone says go jump on a box … that’s not going to happen for me. I have to warm up, make sure my legs are ready. Even sprinting, that’s hard for me too. It’s a few things but it’s not a lot.”
Leonardis advises friends, family, and caregivers of individuals with MS to not treat them like they are breakable or pity them.
“I think the biggest thing—–and John does a really good job at this––is not to feel bad,” Leonardis said. “I think that’s the worst part about it. When someone knows and they’re like, ‘Aw really? Are you okay?’ Like yeah I’m fine, don’t feel bad for me. Give them tough love, because that’s going to make them stronger.
“Not that you can’t have empathy for someone, but you don’t need to feel bad for them. There is a huge difference between empathy and pity.”
For individuals newly diagnosed with MS, Leonardis said to remain calm and remember there are treatment options available.
“I would say don’t be scared, because it’s manageable and you can do a lot of things to keep it manageable and feel good,” Leonardis said. “It’s not as bad as everyone thinks, it could always be worse. Even if your symptoms are worse than mine, there are still so many things you can do. You shouldn’t be limited or let it stop you. Don’t let it define you.”