Rhonda

Rhonda was diagnosed with Multiple Sclerosis (MS) at the age of 20 after experiencing blurry vision, loss of function in her left arm, loss of feeling in her fingers and hands, and leg spasms. After an appointment with her primary care doctor, Rhonda received an MRI that revealed a lesion on her spinal cord. Rhonda’s primary doctor then diagnosed Rhonda with MS and recommended that she see a neurologist for a spinal tap. Rhonda worried that the MS diagnosis would derail her education and career, so she did not follow up on her diagnosis for 7 years. During that time, she experienced about two relapses a year, which included spasms, vibrations in her neck, and the “MS hug.” She went to a new primary care doctor after she could no longer straighten her leg and was told that she did not have MS because her lesion was in her spine and not her brain. Rhonda didn’t know what to do and did not pursue a diagnosis. She began to lose feeling below the waist and experienced vision loss. Thirteen years after her initial diagnosis, it was confirmed that Rhonda had MS. Rhonda has tried numerous medical and complimentary treatments for her MS. She tried to treat her MS through dietary modifications but, although she lost weight, she also lost her vision and function in the right side of her body (which eventually returned). In 2011, she began a 2-year treatment with Tysabri, followed by Tecfidera. Despite these treatments, Rhonda continued to relapse and developed new lesions in her brain. She took Rituxan for a few years, which she described as a “miracle drug,” but it, too, did not prevent relapse. She has seen three different MS specialists, each of which have diagnosed Rhonda with “a different type of MS.” Rhonda is disgusted by the quality of care she received. As a health care worker, Rhonda knew how to advocate for herself, but she kept getting shut down by her health care providers. Trying to get treatment has been frustrating for Rhonda. She is currently waiting for treatment for spasticity and describes her doctors as indecisive. Now that she has moved to a new state, Rhonda is worried that she has to “start back from ground zero” in terms of finding a new MS doctor and resuming treatment.

Rhonda characterizes her experience with MS treatment and medication as a “vicious circle: “If I can’t work, I can’t have health insurance. If I can’t have health insurance, I can’t treat MS.” MS interrupted Rhonda’s ability to work as an Emergency Room nurse. Rhonda “kept trying to go back” to work but she would apply, get an interview, and have a relapse. Her persistent symptoms of vision loss, spasms, intense fatigue, mobility challenges, and mental fog forced Rhonda to stop working at age 35. As a 35-year-old woman who had been working since the age of 17, Rhonda felt that she lost a part of herself that was “replaced with this negative thing called MS.” While Rhonda still mourns the loss of her career, now she recognizes the importance of admitting and accepting her limitations. Today, Rhonda uses a wheelchair, and her current symptoms include spasticity in her right hip, imbalance, lack of endurance, an inability to focus her vision, sensory abnormalities especially in her fingertips, painful vibrations down her shoulder, “disabling” fatigue, and cognitive issues. In addition to MS, Rhonda has also been diagnosed with psoriatic arthritis for which she takes Methotrexate. Currently, Rhonda takes 26 medications and supplements, each of which “serves a purpose.” Rhonda is supported by her best friend of 41 years and her pets who brighten her world.