Adjusting to `new normal’ with support from HHS MS Clinic
Julia DiGuglielmo is adjusting to her new normal following a Multiple Sclerosis (MS) diagnosis last fall.
“I never dreamed at my age that I would be living with a chronic illness,” says the 33-year-old Grimsby woman and mother of three young children. “You think you’re untouchable when you’re young but you’re not.”
MS is an autoimmune disease of the central nervous system. Autoimmune disease is when a person’s immune system mistakenly attacks their body. The severity and duration can vary and are often punctuated by periods of wellness, says the MS Society of Canada. It can also be progressive. Most people are diagnosed between the ages of 20 and 49, and the unpredictable effects last for the rest of their lives. Canada has one of the highest rates of MS in the world, with 12 Canadians on average being diagnosed every day.
The pathway to a diagnosis
It took several months for DiGuglielmo to be diagnosed last year, largely due to delays caused by the pandemic.
Her symptoms started in January 2020 when she woke up one morning with numbness in her left arm and hand. “I couldn’t feel anything,” recalls DiGuglielmo, who booked an appointment with her family doctor. “We thought it was a pinched nerve from carrying my baby, but my doctor ordered MRI and ultrasound tests just to be sure. Then these tests were postponed due to the pandemic and I was left playing a waiting game.”
Symptoms came and went over the summer, varying in severity. When she had an MRI of her spine last fall, it showed multiple lesions. A MRI of the brain was needed to confirm MS.
“Now I have the expert care that I need.”
“I got the brain MRI within two weeks, and was officially diagnosed by a neurologist from the Multiple Sclerosis clinic at Hamilton General Hospital,” says DiGuglielmo.
“I suspected MS, but it helped me a lot to finally have a diagnosis. While I knew I would need to manage this chronic condition, I wasn’t going to let it define me.”
DiGuglielmo sees neurologist Dr. Suresh Menon, who diagnosed her condition, planned her treatment regimen and monitors her condition. She also receives ongoing support from a nurse and social worker at the Multiple Sclerosis clinic.
“You can’t heal unless you reveal what you’re going through.”
“I was never an anxious person, but the diagnosis caused me to feel a lot of concern about my health and my future,” says DiGuglielmo, whose goal is to return to work as an elementary school teacher.
“Talking to my nurse and social worker at the clinic has helped a lot. You can’t heal unless you reveal what you’re going through.”
Serving the region and beyond
The Multiple Sclerosis clinic’s multidisciplinary team serves patients from across the region of Hamilton, Niagara, Haldimand and Brant and beyond including the Waterloo-Wellington area.
The clinic team diagnoses, treats and manages patients living with MS. It also provides support to MS patients and access to research opportunities. Team members include neurologists; physical medicine and rehab doctors who help those with disabilities; residents and clinical fellows; a social worker to help patients with coping, navigating the health system and finding community supports; and nurses who respond to patient concerns over symptoms and relapse, assist them in accessing treatment, provide individualized education and help to navigate health resources.
“I’m just so thankful for everyone there,” says DiGuglielmo, who receives medication by infusion every six months to help keep her condition in check, as well as ongoing support from the nurse and social worker.
“It’s a huge relief to have a diagnosis and a plan in place to manage my symptoms. The worst part was feeling like I lost control of my body. Now I have the expert care that I need.”