Written by: Lindsey Elliott | lelliott@ciscrp.org
“Angie, are you sure there isn’t more going on? Are you having any other symptoms?”
Angie Volk, a Multiple Sclerosis patient and advocate, recalls being taken aback by this question posed by her Urologist at an appointment in 2014. In her early 40s, Angie was in an executive role in the healthcare industry that required weekly travel for work via plane. Over the years, Angie had begun struggling with urinary issues, which eventually worsened making travel difficult. She made the decision to consult a Urologist for evaluation and treatment. After a year of treatment, Angie’s doctor suggested there may be an underlying health condition causing her problems, and recommended she see a Neurologist.
“This conversation with my doctor was the catalyst for my diagnosis and the start of my journey as an MS advocate. I am so thankful to my doctor for her advice. Without it, I wouldn’t be where I am now,” Angie says.
MS is diagnosed most commonly between the ages of 20 and 50, but it can go unrecognized for years. Many people living with MS experience “invisible”, or not outwardly visible symptoms which can create a unique set of issues they have to face.
“Some people assume that you don’t really have a disease because you may not appear visibly sick. This can undermine a person’s confidence and discourage them from seeking treatment. You may develop feelings of anger, frustration, and fear as well. People living with MS need to be prepared to educate the important people in their lives about their disease and the symptoms they experience,” Angie explains.
“Looking back now and understanding my disease, I realize I had been experiencing symptoms of MS back in my twenties and thirties without realizing,” she notes.
During that time, Angie was in nursing school, working long hours. She suffered from daily headaches and neck pain and began visiting a chiropractor regularly. During that time, she experienced sporadic and unusual health issues for which she was also screened for Lupus, but no conclusive results were identified.
After being referred to a Neurologist, Angie underwent an MRI and numerous tests for different autoimmune and clotting disorders. She was diagnosed with chronic migraines and started medication, receiving additional referral to an interventional pain management physician for her neck pain. In 2016, Angie requested and received a second MRI to compare to her baseline exam. Although her first MRI had found brain abnormalities (white matter lesions), the doctors had initially believed these were related to her migraines and did not schedule any additional MRI’S at that time.
“I knew something wasn’t right, so I kept pushing for answers,” Angie recalls. It was then that Angie was finally referred to the MS neurology clinic “Once I was able to get into the MS clinic, I was finally diagnosed.”
Multiple Sclerosis is a disease where a person’s immune system attacks the brain and spinal cord. This damages myelin, the protective layer insulating our nerves, ultimately disrupting signals to and from the brain.
Individuals with MS will experience disease progression often involving the development of lesions in the brain or spinal cord. The placement of these lesions impact how a patient’s symptoms will manifest and progress. No two individuals with MS will have the same symptoms, impairments, or outcomes. However, common problems include impaired vision, cognition changes, weakness, difficulty with balance, fatigue, dizziness, and urinary issues.
“With a disease like MS, there is no single treatment plan. Treatments vary for each patient,” Angie explains. In her case, Angie works with several specialists to manage her symptoms. “The part I find frustrating as a chronic patient, is that I don’t have a straightforward or streamlined treatment plan. I see so many doctors. As my disease has progressed, constant appointments have begun to interfere with my life. It can feel like a full-time job, managing my health and going to medical appointments.”
Most MS patients manage their symptoms by taking medication, whether by oral, injectable, or by intravenous infusion. “A common treatment MS patients receive is called Monoclonal antibody therapy, which involves an intravenous infusion administered under close medical supervision. These infusions can be monthly or more sporadic. In my case, I receive a monoclonal antibody infusion twice a year,” Angie says.
She explains that these treatments are very effective in suppressing the part of the immune system that causes inflammation, so the disease doesn’t progress. “Unfortunately, your immune system is being suppressed, which increases your risk for infection – upper respiratory being the most common.”
In 2020, the pandemic made daily life dangerous for Angie and other members of the MS community.
Angie explains, “My treatment suppresses B cells, which play a role in the production of antibodies. This type of therapy reduces the effectiveness of vaccines, given that your body cannot adequately produce the antibodies needed to provide immunity. After my first two COVID-19 vaccines, my blood was tested and the sample detected no antibodies, meaning I was left unprotected and extremely vulnerable to the virus.”
The pandemic also impacted Angie’s access to care. With the many complications put in place by COVID-19, Angie made the decision to opt out of some regular therapies to limit her exposure. She did not attend her physical therapy appointments and avoided public spaces since there was no guarantee that everyone around her was vaccinated.
Despite these challenges, Angie’s medical knowledge and strong self-advocacy motivated her to continue her medical journey, now as a clinical trial participant. Angie has participated in several MS clinical trials over the past couple of years. When reflecting on her decision to initially join a clinical trial, Angie shares, “I knew that self-advocacy was important to my regular medical care, but also realized it was equally relevant to clinical research. I was familiar with how clinical trials were conducted because of my previous work as a nurse in the clinical setting, but I had never personally participated in a trial.”
In her free-time, Angie became further educated about MS and the current research being done in the US and abroad. Having new information allowed her to stay informed about the latest medical advances with MS and clinical trial opportunities. While researching, Angie discovered that one of her physicians who worked in MS clinical research was conducting a booster vaccine study for MS patients on certain immunotherapies with the goal of evaluating a patient’s immune response by analyzing their blood levels. Angie was excited to join the clinical trial for the booster vaccine.
Since T cells are not regularly monitored, Angie was curious to see whether she had adequate protection from COVID-19 despite not producing antibodies from the vaccine. “I wanted to know just how safe am I during this pandemic? Is my immune system strong enough to protect me if I were to get exposed to COVID?” Angie recalls.
Angie has also joined other MS clinical trials. Her nurse practitioner referred her to a study focusing on physical therapy treatment for individuals with MS, allowing her to receive free physical therapy.
“When I began my medical journey and considered joining a clinical trial, I had my own medical background to rely on, but also a strong network of friends and colleagues in the medical field as well. I knew I could go to them to share my concerns and thoughts and they would support me.”
Angie emphasizes that when it comes to getting involved in clinical research, finding a practitioner who partners with you in decision-making is critical. “We all deserve to have a say in our medical treatment. I suspect that many people who may be considering joining a clinical trial might be apprehensive to do so because they don’t know what questions to ask, are nervous to speak up to their healthcare provider, or worry that they may ask too many questions and be perceived as annoying. However, being informed is so important. As a trial participant, you always have a choice and should feel comfortable advocating for yourself.”
Angie shares that her own medical journey has helped identify unmet patient needs across the board. “Many people don’t even know what questions to ask their doctors, and without a medical background this type of diagnosis can be incredibly overwhelming. It’s so important for practitioners to share information about how clinical trials work, their importance, and to discuss any current trial opportunities available to their patients,” she says.
“Ultimately, joining a study is a win-win situation. Clinical trials and those who participate help advance medicine. There are so many different opportunities available to those who are looking for them.”
For those considering participating in a clinical trial, Angie says, “Have an open mind, and do your own research. If you have questions, reach out to someone that you trust.” If possible, Angie recommends getting connected with someone who has participated in a trial who can answer your questions with firsthand experience and help alleviate any apprehensions.
For more information and resources about Multiple Sclerosis, visit the National Multiple Sclerosis Society website.
To stay informed about clinical trials, visit our Resources page.
To search for medical conditions in a specific location, visit our Search Clinical Trials page.
