|30th May 2019
When American actress Selma Blair recently spoke publicly about her MS diagnosis, you couldn’t be involved in the ‘MS world’ without seeing clips of the interview she gave to ABC News popping up everywhere on social media. It was being shared far and wide. This isn’t the first time a celebrity has gone public with an MS diagnosis, in the US anyway. However, there was something about her interview that I could see resonated with many people affected by the condition.
As a patient advocate, many of the questions I’m asked tend to be around support and services following a diagnosis. However, I think there is still much to be done to ensure that the initial diagnosis comes in a timely manner. This is even more important when some key opinion leaders within neurology advocate the need to treat early with efficacious drugs for the best chance to delay progression.
Blair speaks about MS being a “snowflake” disease, an analogy that many of us with the condition are familiar with. The very mechanism of the disease, whereby symptoms will depend on where in the brain and spinal cord damage is occurring, means that no two people with MS are the same. Even identical twins with MS will not necessarily follow the same disease pathway. I’m a case in point. I have an identical twin who also has MS. Her symptoms, and the severity of them, have been different from mine.
It means that symptoms can be misdiagnosed, especially when presented on their own. My first relapse was losing the strength in my hands. I was otherwise very healthy, and it was diagnosed as repetitive strain injury. It wasn’t until after my definitive diagnosis four years later, following more severe symptoms, that it dawned on me that my MS may have been there longer than I thought.
MS symptoms can be hard to pin down. I’ve heard bladder issues being attributed to “women’s problems”, bowel issues to irritable bowel syndrome (IBS), and fatigue to stress and a busy life. When I told an MS Facebook group that I was writing this piece, I was inundated with stories of people saying their symptoms were initially dismissed. Like Blair, they were told that it was anxiety, hormones, hypochondria and anything else in between. This can impact mental health and confidence, relationships with healthcare professionals and family, and means that people are living with symptoms they cannot manage effectively because they don’t have a diagnosis.
Blair also talked about requesting an MRI and it being refused. This is a key diagnostic tool in MS, without which an official diagnosis is almost impossible. However, when symptoms aren’t being taken seriously in the first place, often would-be MS patients are accused of wasting time and resources on a scan that “just isn’t necessary.”
Another issue is “connecting the dots.” At a time when GP practices are increasingly under time and resource pressure, people may see several different doctors rather being guaranteed to see the same one. Consequently, it can be difficult to piece together the often vague and disjointed symptoms of MS.
I’m not saying this is always the case. Following what was my second relapse, during which I lost the feeling down the left side of my body, my diagnosis happened relatively quickly. Within nine months I’d had two MRIs, a lumbar puncture, various blood tests and received a definitive diagnosis. However, I can’t help but wonder whether that’s because I was lucky enough to have private health coverage and my particular symptoms were severe enough to cause alarm bells to ring with the newly-qualified GP I saw, who wanted to “cover all bases.”
|22nd January 2020
Within our customer experience capability at Blue Latitude Health, our UX researchers and designers are tasked with understanding customer and client needs. Recently, a client required a centralised system to drive the development and deployment of data-driven patient services. Here, we explain the process of developing this platform.
|18th December 2019
Multiple myeloma patient Bob Munro explains what it's like to live with the rare blood cancer and how his diagnosis led him on the journey of a lifetime – cycling from London to the Arc de Triomphe.