For individuals grappling with autoimmune conditions like multiple sclerosis (MS), the journey to diagnosis can be long, frustrating, and fraught with challenges. Having the right tools and resources can make all the difference—from tracking MS-related symptoms to optimizing self-care and physical therapy. This article explores how tech solutions, expert insights, and holistic approaches can simplify the MS journey, improve communication with care teams, and reduce unnecessary medical costs.
To delve deeper into this topic, I spoke with several experts to understand what goes into an MS diagnosis, what the pain points are during management, and how Guava and other resources might be able to help.
The Diagnostic Dilemma in MS
MS diagnosis is notoriously complex, often taking years and multiple healthcare encounters. This process is not only time-consuming and expensive but also emotionally taxing for patients who are eager for answers.
Dr. Kat McGraw, M.D., the Chief Medical Officer at Brattleboro Memorial Hospital, made it clear that patients frequently find themselves struggling to recall symptom timelines, repeating tests, and navigating a fragmented healthcare system. This not only delays crucial interventions but also exposes patients to unnecessary risks and financial burdens.
Tracking MS Symptoms in Real-Time
Due to the complex and episodic nature of MS, patients and caregivers often need to maintain detailed logs of symptoms to track the progression and fluctuations over time. Dr. McGraw explained that unfortunately, this can complicate the diagnosis process.
“Patients want to give accurate data, but they’re human. It’s hard to remember the exact day when a symptom like double vision started, or even if balance issues started before or after the pandemic.”
Despite how difficult timeline recollection can be for patients, especially those struggling with MS, the devil is often in the details when it comes to diagnostics. The difference between two weeks versus one month, or even three days versus a week can impact how doctors choose to move forward with diagnosis and treatment.
Sherry Foley, an RN who was diagnosed with MS at age 22, agreed–remembering everything on her own was out of the question. She mentioned that between seeing numerous specialists who didn’t communicate with each other, the most useful tool was writing everything down. For Sherry, using the Guava app to track MS symptoms and get insights into her health has changed the game.
Care Teams
In a discussion with Can Do MS, we explored the crucial role of provider communication in MS care.
Many MS patients don’t have access to specialized MS care clinics that offer multidisciplinary management, often resulting in redundant and disorganized treatment. However, a well-coordinated care team offers significant benefits.
Can Do MS and similar organizations connect patients with care teams to improve providers’ ability to address diverse symptoms and coordinate treatment plans. Since there can be numerous treatments, medications, and historical data for providers to sort through, Can Do MS mentioned that having centralized patient records could be essential to successfully coordinating care for MS patients.
There are also at-home care organizations that can be incredibly useful for MS patients. Sherry shared her experience with a health company that provided at-home extended physical and occupational therapy services beyond the typical 6-8 week period. Her prolonged care with a consistent team proved to be great for recovery and keeping her MS symptoms in check.
“Because they stayed longer, I started meeting my goals left and right. They now do a maintenance program where they come once a month to make sure I don’t lose ground.”
She also emphasized the benefits of approaching MS care in a multidisciplinary way, and that for sustained improvement, there’s no “one size fits all.”
Reducing Redundancy and Costs
Without access to a patient’s historical record, Dr. McGraw explained that it’s not uncommon for doctors to repeat MRIs and blood tests when seeing a new patient. To cut down on both time, cost, and risk, it’s incredibly useful when patients can advocate for themselves with solid data.
“Repeated tests are expensive and time-consuming, but they can also be dangerous. If patients can show me their past scans, we can skip the radiation and avoid unnecessary harm.”
For that reason, syncing with patient portals and providing easy access to previous test results can be incredibly valuable for patients.
Insurance Advocacy
Making decisions informed by data is important not only for providers but for insurance companies approving treatments. Dr. McGraw brought up a critical point regarding diagnostic accuracy, treatment, and importantly, liability.
“Doctors need to work with data, not hunches.”
Even when patients have a clear picture of their medical history, without the evidence to back them up, there’s a higher chance of restarting the process back at square one.
We discussed how insurers often require patients to do “step therapy,” where they try cheaper treatments before approving more effective but expensive options. Although this decreases liability on the insurers’ end, it can end up causing more harm than benefit for the patient.
“Many treatments for autoimmune diseases like MS, especially steroids, carry significant risks with repeated use. If we’re prescribing something, we want to be sure it’s worth it.”
She highlighted that Guava can be particularly useful in this case, since it can offer a clear record of what’s been done and how the patient responded. By using a data-driven approach, patients and doctors can streamline insurance approval processes and enhance the overall quality of care.
The bottom line
Ultimately, whether it's through detailed symptom tracking, better communication with care teams, or advocating for the right treatments with insurance companies, data-driven tools provide patients with valuable support in their daily lives. For those living with MS, integrating these resources can help ease some of the emotional and physical burdens, leading to more efficient and effective care. While no solution is perfect, empowering patients with the right tools offers them the chance to live more independently and manage their condition with confidence.
