The following article is an update to a patient experience using NeuroQuant MS tracked over three years.
Our original interview with Cliff Currie happened in November of 2019, just over a year after his diagnosis of relapsing-remitting Multiple Sclerosis. Cliff was working with us as a contractor at the time of his diagnosis, but he strongly believes that our relationship was instrumental in the discovery of his disease.
Keep reading to see what Cliff has been up to, and some real-life tips for managing MS – straight from a patient’s playbook.
Catching Up with Cliff Curie
Cortechs: We last spoke in 2019. What has happened with you, your family, and your MS since then?
Cliff: My family has moved three times between two states, countless hours of cognitive therapy for my MS, on and off of disease-modifying therapies, lots of soul searching, and learning to thrive with a condition I do not have much control over.
I was unaware of how badly heat affected my MS. After learning more about my MS and experiencing several HOT years in Texas, it was apparent that we needed to seek out a mild climate – since excessive heat causes extreme fatigue, among other symptoms. In December 2022, we moved to North Carolina, where I finished remote learning classes that led to a university degree. I also rode my bike in the Texas MS150 last year, which I never thought would be possible given my level of disability, especially in 2018, 2019, and 2020.
Cortechs: How is North Carolina treating you, given the weather affects your symptoms?
Cliff: It’s still early in our experience, but so far, so good! It is rarely super cold or super hot. The climate looks mild compared to Texas, which has vast temperature swings during winter.
Cortechs: It sounds like you have learned a few things about what triggers your MS; what other things have you noticed?
Cliff: Good question! Stress is a significant trigger and sends my MS into a tailspin. I rarely let stress get bad enough to where it can trigger a relapse, but some stress is unavoidable and can activate flare-ups, which doesn’t always cause additional and permanent nerve damage; it’s just intense symptoms that come and go like loss of vision (optic neuritis), difficulty thinking (cog fog), walking, balance and constipation. You know, the fun stuff! I have had to work hard to work with my disease instead of against it. Working with it means understanding how and when it affects me and having the tools to work through the challenges when they come on unannounced.
Cortechs: How did you manage doing so much, like moving, getting a degree and spending time with family, all while battling MS?
Cliff: Honestly, for me, it is all about metrics. My analytical brain drives my wife crazy. I track everything and look for similarities and outliers. I like data sets; they show trends. Since my diagnosis in 2018, I have been fortunate to have a team of great people and tools. My care team at UT Health, my family, and my colleagues at Cortechs.ai have been instrumental in getting my confidence back. The first few years of adapting to my new reality were challenging and depressing. However, I learned much about myself by tracking almost every metric of my existence. That is to say, how much exercise I get, what I eat, the amount of sleep each night, an in-depth study of stressors I can cut out of my life, different ways of dealing with stress that I cannot avoid and using tools like NeuroQuant MS to qualify and quantify my disease activity.
Cortechs: Can you tell us more about how NeuroQuant MS has helped with your journey to thriving with an incurable auto-immune disease?
Cliff: As I mentioned before, tracking every metric doesn’t exclude my clinical evaluations. I desperately want to keep an accurate baseline of the MS activity in my brain, including lesions and gray matter atrophy, to see what is resolving or progressing. My provider is willing to discuss the NeuroQuant MS reports with me. Together we can discuss areas of concern and keep things consistent with the imaging. If I request to use NeuroQuant MS, the MRI scan settings are the same every time, which allows for more accurate reports, especially in a series of studies (scan sessions) over time. We get a better picture (literally) of what is going on in my head.
Cortechs: Knowing what you know now after 5 years post-diagnosis, what will you say to others about living with MS?
Cliff: At one time, I participated in a live interview session that included Dr. Suzie Bash, a neuroradiologist with a passion and interest in the AI imaging space. During the interview, I inadvertently mentioned things I had learned since my diagnosis. I authored the following lessons several years ago, but they are still relevant today. The following tips are mostly about things someone can do when newly diagnosed with MS:
MS survival guide: Tips and tricks from a patient’s personal experience
10. Get at least three opinions from the professionals. In my case, it was several neurologists.
9. Build a case. This case is especially crucial for MS because of the variability of the disease. My wife and I discovered that we needed to tell the same story to every provider to ensure misinformation wasn’t skewing the facts or communicating misleading information.
8. Become pseudo-experts. I found it helpful to dig deeply into my tests and learn as much as possible to ask my doctors and nurses very pointed questions to make the best of my time with them.
7. Become an expert note-taker and bookkeeper, ESPECIALLY with MS, as cognitive decline is a common symptom. What might not be hard to remember today can be easily forgotten tomorrow, especially during a flare-up or relapse. I applied this practice to my search for data on different disease-modifying therapies and used notes to dive deeper into information and risk/reward scenarios with treatment options.
6. Have a patient advocate. Diseases like MS are emotional roller coasters, mainly when someone initially receives their diagnosis. To expect someone in the trenches (the patient) to have a complete view of the soon-to-be battleground is unrealistic. An advocate can help emotionally and strategically in the coming days, weeks, months, and years. I am my wife’s advocate, and she is mine. We have very defined roles as each other’s advocates. The advocate helps track symptoms and behavioral irregularities, keeps track of schedules with doctors, attends meetings with health care providers, takes notes, makes appointments, and suggests lifestyle changes. The patient focuses on limiting stress and collecting accurate symptom tracking for future reporting.
5. Learning to trust my instinct and listen to my gut. My gut feeling became essential in making the right choices for myself. I learned that if something did not feel right, it was time to question it and get a second or third opinion. For example, I will use my misdiagnosis of Bi-Polar disorder from a psychologist nearly a decade before my MS was discovered as it turns out, my good days and bad days that looked like manic highs and depressive lows were my Multiple Sclerosis flaring up and remitting, mimicking symptoms of Bi-Polar disorder. I sought a second opinion, and I am happy that I did because the doctor at the time prescribed some heavy drugs used to treat bipolar, which I never took based on a gut instinct that it was an incorrect diagnosis.
4. Making friends with those that know the insurance process.
As a patient, you are battling on two fronts. One is your health, and the other is the cost of the care. It’s sad that when facing life-changing and sometimes life-threatening diseases, a business element falls on the patient and caregivers to manage. Get friendly with the folks that work with the insurance provider. They can save a lot of money and headaches, which is critical in times of need.
3. Staying focused on long-term outcomes is often challenging but necessary.
While the day-to-day seems tedious, overwhelming, and depressing, I find it helpful to focus on the positive aspects of the challenge.
I stay focused on being well for my family. It would be nice not to have to deal with it all, but the long game is to halt the progression of my MS and stay healthy. My son has a poster at his school that reads, “When you focus on the good, the good get’s better.”
2. Finding the RIGHT support group is more important than finding any support group.
For example, I can’t relate my struggles with MS to others who do not have kids, deny medication, or rely on things like CBD to be the cure-all. I look for highly analytical and research-focused comradery when discussing strategies for handling my MS.
1. The biggest mental challenge.
Our medical system has flaws but is full of incredible science and people.
After ten years of seeking my diagnosis of MS and helping my wife beat cancer, there is still one area where I think our healthcare system could use some significant improvements.
As a country, we lead the way in helping cure cancer and other serious ailments, but we lack the mental health support needed to support patients and caregivers.
Depression and anxiety alone are terrifying, and if these issues go unaddressed, they can impact physical recovery negatively, with increased infections and atrophy to start. In the case of Multiple Sclerosis, a recent study discovered that stress does accelerate the disease.
Mastering one’s attitude with how a problem is approached and managed is a superpower with conditions like Multiple Sclerosis.
Here are some additional resources for caregivers and patients:
The National MS Society is a terrific resource for accurate information about MS.
The RealTalk MS is a weekly podcast about everything MS. RealTalk MS features excellent interviews and news about developments in MS.
Thank you to Cliff for sharing his story with us! We are grateful to him for his transparency, and for letting us be a part of his journey.
At Cortechs.ai, we are dedicated to supporting those affected by multiple sclerosis.
NeuroQuant MS offers accurate visualization of lesions and lesion volume change to deliver a precise and objective assessment of disease progression. Obtaining volumetric qualification of lesions can facilitate the early detection and monitoring of MS, thus allowing for earlier interventions and reducing long-term MS-related disability.
We take pride in contributing to the fight against MS, and we want to show our support for those living with the disease and raise awareness about the need for better care and treatment options.
To learn more about NeuroQuant MS, please visit the page or check out our other blog posts.