My Best Self with Multiple Sclerosis

In hindsight, there are many times that Nicole Farley, 32 of New Hartford could pinpoint signs of Multiple Sclerosis (MS), but she kept telling herself, “you’re young, you’re healthy, you’re fine.”

Nicole Farley and her family.

In hindsight, there are many times that Nicole Farley, 32 of New Hartford could pinpoint signs of Multiple Sclerosis (MS), but she kept telling herself, “you’re young, you’re healthy, you’re fine.” A few years ago, she felt a pop in her shoulder while moving a dresser that led to numbness in her left arm, a trip to her general practitioner led to a diagnosis of a pinched nerve.

After six months of numbness in her shoulder and arm, she began exercising and while running, her legs would also become numb.

I remember saying to my husband, “I could have MS,” says Farley.

In December of 2019, she had Bell’s palsy on the left side of her face, an unexplained episode of facial muscle weakness or paralysis, and went to the Emergency Department. Her General Practitioner still did not believe she needed to be concerned that it was MS when she asked him again.

Upon returning from the holidays with family in Ohio, Farley insisted on an MRI. She was scheduled for one in March 2020 and then COVID hit, postponing her MRI until that August.

She had just started a new job as a Speech Pathologist at an elementary school and had her virtual appointment to receive her MRI results during her lunch hour. A colleague came to sit in on the call for support. She was told that the MRI indicated she had demyelination on the spine and brain that was suspected MS.

MS is the most common demyelinating disease of the central nervous system. In this disorder, the immune system attacks the myelin sheath or the cells that produce and maintain it. This causes inflammation and injury to the sheath and ultimately to the nerve fibers that it surrounds.

“I was in shock and called my husband,” says Farley. “We have no family here and it was really scary.”

She was referred to Neurology and shortly thereafter, the team from the MS Center at UConn Health reached out to her, including Karen Altomari-Nelson, RN, MSN, Clinical Patient Navigator.

The team of specialist at the MS Center at UConn Health offer comprehensive, compassionate care for patients with MS. Altomari-Nelson’s role as a patient navigator is to help patients navigate through the disease process and their appointments. As well, she is there to educate the patient and help them assess new or acute symptoms and what to be concerned about. She is available by phone or email to help the patients with their concerns.

“Your journey is not the same as someone else’s and it’s frustrating if you are scared or have an onset, and need to talk to someone and get an automated system,” says Altomari-Nelson. “It is important for our patients to know that there is someone they can reach out to for their questions and concerns and to take the overwhelm away.”

“Shock from diagnosis is devastating for a patient and our job here is to help the patient with this initial situation that often leads to depression,” says Dr. Jaime Imitola, Director, Division of Multiple Sclerosis and Neuroimmunology. “There is a lot of grief in the beginning and 50 percent of patients get sad or depressed which can delay therapy and proper management so here we have the whole team to address these issues to solve that particular struggle with our patients, in the beginning, then we can move on to the plan of care to restore patients to wholeness.”

“MS is an autoimmune neurological disease that impacts the brain and spinal cord, usually in young people between 18 and 35. We do not know the exact cause of MS but we do know how it progresses and we work to diagnose it early in the disease process,” says Imitola.

MS damages myelin, the protective layer insulating wire-like nerve fibers, disrupts signals to and from the brain. This interruption of communication signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness, and/or paralysis. Everyone’s experience with MS is different and these losses may be temporary or long-lasting.

Many times patients are diagnosed after delays or sometimes we start from scratch to be diagnosed properly. More important despite the progress there are still significant gaps in care because of delays from a general neurologist, lack of referral to MS center, or just misdiagnosis, which are often by inexperienced providers who have missed the signs or who have not known the appropriate time to order an MRI.

“We have been making steady progress over the last 30 years in diagnosis and treatment and early diagnosis is key to starting treatments early to delay the progression of the disease and prevent disability, says Imitola. “This is why patients with MS must have care in the comprehensive MS center because we have the team and the expertise to take care of the patient,” says Imitola.

Within days of her MRI results, Farley met with Dr. Jaime Imitola, Director, Division of Multiple Sclerosis and Neuroimmunology.

Shocked and overwhelmed with her diagnosis, Farley feels blessed to have met Dr. Imitola. “He immediately made me feel like I was family and he treated me as he would a family member,” she says.

“When I was first diagnosed, my mind went to a former neighbor in Ohio who had MS and was wheelchair-bound,” says Farley. “Dr. Imitola assured me that the treatment and medication now are more advanced than they were 30 years ago and the goal is to keep her from progressing.”

Imitola started Farley on steroids that week for an active lesion on the brain. He then went over her treatment options and she was able to decide on what she felt was the best option for her. She chose Tysabri which is administered every four weeks through an infusion and she feels has fewer side effects. Her infusion takes place every month at the UConn infusion center, where an experienced team of nurses are dedicated to complex MS infusions.

“I feel better with the medication, the numbness in the left arm is still there, but it no longer feels like it was burning and on fire,” says Farley. “I used to struggle with the velcro on my daughter’s diapers, now I’m able to put her earrings in.”

Despite many years of intensive research, the causes of multiple sclerosis (MS) remain unknown. One possibility is that it’s triggered by a viral infection. Epstein-Barr virus (EBV) has been among the top suspects that can cause infectious mononucleosis, or mono, in some people. After an EBV infection, the virus remains in a latent state within cells and, in some cases, may reactivate. Farley believes that a bought with mono her senior year of high school as well as low Vitamin D levels may have led to her MS.

No one knows the cause of MS, but there have been some risk factors associated with an increased chance of having it. The following groups are at greater odds to receive an MS diagnosis and have worse outcomes:

  • Women
  • People with obesity
  • People who live in a colder climate.
  • Caucasians
  • African American women
  • African American men over 50
  • People with a family history of MS
  • People who have been diagnosed with another immune disorder
  • Smokers

“We don’t know how the risk factors interplay, but we know they are related, so if we care for those factors now we can make an impact on the incidence of the disease,” says Imitola.

Two years into her diagnosis, Farley feels well. She participates in an MS Challenge fitness program and is cognizant of what she eats, knowing that inflammatory foods and stress will exacerbate her symptoms.

She enjoys time taking walks and hikes with her husband, whom she has been with since they were 13 years old, and her two children 3 and 5 years old.

“The MS Community as a whole is very supportive, this type of diagnosis makes you realize what is important in life and what is not,” says Farley. “I feel blessed that I found Dr. Imitola and the team at UConn Health.”

Our goal is to prevent disability and avoid the progression of the disease over time, says Altomari-Nelson. “MS is not a death sentence, it is slow-moving, and having an MS specialist like Dr. Imitola and a team to support you makes all the difference.”

Farley’s advice to others is to know your body and when something isn’t right, be sure to seek the answers and advocate for yourself.

“Our goal is to empower the patient and families and provide self-awareness and advocacy for patients,” says Imitola. “We want to and are going to help you understand the disease, if you understand, then things will be better for you, especially if you are a patient with lack of access, severe disability, or minorities that may have worse MS trajectories and prognosis.”

The MS Center at UConn Health has been designated as a Center for Comprehensive MS Care by the National Multiple Sclerosis Society for our knowledge and expertise in caring for people with MS and other neuroimmunological diseases. The MS Education Series and Support Group are also part of the MS Center.