If there is one lesson that Jennifer embodies in full, it’s this: always live life to your fullest. That’s what Jennifer aims to do every day. As an education consultant, she travels across Texas and works with teachers, principals, and superintendents to improve their programs for English learners. As a triathlete and long-distance runner, she tries to challenge herself to be a little bit better every day. She recounts her first experience in the Chicago marathon:
“I think I cried about 47 times before, during, and after. It was such a great opportunity and I met so many unique people along the way: this guy handing out popsicles in a neighborhood, a man from South Bend who was running to show support for his brother going through cancer treatments. I remember turning a corner and facing – they call it Mt. Roosevelt – and I climbed it one step at a time. There were so many awesome people along the way who helped push me.”
But Jennifer also faces challenges in her personal life, such as her multiple sclerosis (MS) diagnosis. Although getting diagnosed with relapsing-remitting multiple sclerosis (RRMS) was a shock, Jennifer has harnessed her emotions and used them to enact positive change—on the world and within herself.
Recently, Jennifer and I sat down to discuss her diagnostic journey, what multiple sclerosis is, how to keep MS in mind while marathon training, and advice for those who are newly diagnosed (or on their own journey).
At the time when her symptoms began, Jennifer was working as a teacher and track coach. One day, she was arriving at work when her vision began to waver. She shares:
“I felt like a space cadet, like I had taken too much medicine. One eye felt like it was seeing higher than the other. I had to cover one eye just to walk and drive. By the end of track practice, I didn’t think I was going to make it that day. I called the principal, asked if I could have a sub, and made a doctor’s appointment.”
Unfortunately, Jennifer’s primary care physician (PCP) was out of the office that day. She met instead with another doctor who diagnosed her with allergy-induced vertigo. Jennifer was told that a decongestant would most likely help and, if not, she could come back in a few days. Her condition worsened quickly.
Within three days, she was no longer able to stand up on her own and needed to use a wall for support. She had developed optic neuritis, a swelling that damages the optic nerve and often leads to pain with eye movement and temporary vision loss, that quickly became more severe. She also began experiencing fatigue and numbness in her legs. When she went back to the doctor, she says:
“He told me, ‘Jennifer, looking at your symptoms, it could be one of three things: a brain tumor, lupus, or multiple sclerosis.’ As a relatively healthy 20-something-year-old, that is just a foreign thought. I didn’t like any of those choices.”
Jennifer was referred to a neurologist and had to undergo a lumbar puncture. The results, along with her symptoms and neurological examinations, officially confirmed her RRMS diagnosis. The doctor told her that she needed to begin treatment: a round of high-powered steroids, which made her feel better. But, she explains, this was not the end of the road; each time she experienced a relapse, she would go back to the doctor, get treated, and begin the cycle anew.
What is Multiple Sclerosis (MS)?
Multiple sclerosis (MS) is a chronic neurological disease which affects the central nervous system (brain and spinal cord). While doctors don’t know the exact cause of MS, many consider it to be an autoimmune disorder in which the immune system mistakenly attacks the myelin sheath (the protective covering) of nerve cells. As a result, the nerves become damaged, affecting communication between the brain and the body. MS can be relapsing and remitting (in which there are periods of remission and symptomatic episodes) or progressive (continuing with no remission) and can change depending on the stage of the disease. This is a variable disease and affects each individual differently.
Symptoms and Risk Factors
Risk factors for MS include smoking cigarettes, being between 20-40 years old, being female (2x more likely than males to develop this), certain infections such as Epstein-Barr virus (EBV), and vitamins D and B12 deficiencies. Symptoms can (but do not always) include:
- Problems with balance and coordination
- General weakness and/or numbness
- Visual disturbances
- Lhermitte’s sign (electric shock sensation when the neck is moved)
- Unsteady gait
- Dizziness and vertigo
- Bladder and bowel issues
- Neuropathic pain
This is not an exhaustive list of symptoms. In Jennifer’s experience:
“When I was diagnosed, the doctor gave me a list of things that I might experience. But MS is really different for everyone. I’ve met other people whose symptoms are completely different from my own. What was difficult was when the doctor told me that if I wanted to have kids, I needed to have them sooner rather than later. But overall, I tried to maintain a positive attitude because I wanted to avoid falling into the ‘What if’s’.”
While her doctors provided lots of information about potential symptoms and outcomes, Jennifer felt like, at first, she struggled to get information from her doctor about treatment options and plans. She remembers asking her doctor what treatments were available, but the doctor just kind of brushed her off. Jennifer explains:
“She said, ‘Oh, there’s treatments.’ I asked which one would be best, but she wasn’t really guiding me. She explained that there were three treatments, but she couldn’t tell me which one to go on. But she’s the doctor! I wanted her input and just didn’t get much about the options, side effects, or anything like that.”
Eventually, Jennifer decided to just embrace the experience and try to move through it. She began a therapy which required injections every other day— though later struggled with this. The injections made her feel sick and tired. Right when she was beginning to feel better, it would be time for her next injection. More importantly, MRIs showed new lesions on her brain, signifying that her MS was progressing. She shares:
“At the time, I kept thinking: I know MS is bad, but does it have to be this bad?”
Join us in Part 2 as we discuss treatment, managing MS, and advice for the newly diagnosed.