It took ten years to find and begin treatment for my Multiple Sclerosis.
What I learned during my wife's five year battle with breast cancer and recovery gained me the experience I would need to find the right team, of whom I could ask the right questions and help me get the proper tests to find the smoking gun of MS.
Statistically speaking, I fall slightly outside the margin of diagnosis as it takes folks diagnosed with Multiple Sclerosis, on average, four years to get diagnosed. However, I can tell you that I have never met anyone with MS who received a diagnosis in four years or less. The journey is often long because MS shares symptoms and presents as many other ailments ( The Flu, Fibromyalgia, Lupas, and the list goes on). In the grand scheme of things, it takes some darn savvy detective work and lucky timing to track down MS. Even with the best and most modern technology, you still have to know where to look and which questions to ask to find MS and its severity in every case.
Also, MS looks different from patient to patient. It's a complicated process of tests and educated guesses that can eventually lead to the proof needed for a diagnosis. For most, the end goal is a diagnosis with a treatment plan and lifestyle modification strategy.
Here are the top 10 lessons learned from my wife's experience with cancer that eventually led to the discovery of my MS.
#10 - Get no less than three opinions from the professionals. In my case, it was several neurologists, for my wife, it was oncologists and surgeons.
#9 - Build a case. My wife and I discovered that we needed to tell the same story to every provider to be sure misinformation wasn't skewing the facts or communicating misleading information. This case is especially crucial for MS because of the variability of the disease. For example, on any given day, I may be able to ride my bike 20 miles, and then the next day, I may lose sight in one eye and the ability to stand unassisted. Cancer seems to be a bit more linear, in that it gets worse untreated while MS may or may not.
#8 - Become pseudo-experts. We learned that when we got our test results, we found it significantly helpful to dig deeply into our tests and learn as much as possible so that we could ask our doctors and nurses very pointed questions to make the best of our 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. Andrea's cancer was aggressive, and keeping detailed notes of each meeting with our providers helped us navigate some tricky situations and navigate around potential treatment pitfalls. I applied this practice to my MS search and used my notes to dive deeper into information and risk/reward scenarios with treatment options.
#6 - Have a patient advocate. Cancer and 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 was my wife's advocate, and she is mine. We have very defined roles as each other's advocate. The advocate helps track symptoms, 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 purposes.
#5 - Learning to trust my instinct and listen to my gut feeling became an essential step in making the right choices for both my wife and myself. We learned that if something did not feel right, it was time to question it and get a second or third opinion. As an example, I will use my misdiagnosis of Bi-Polar disorder that I received 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. Both my wife and I sought a second opinion, and I am happy that we did because the doctor at the time prescribed some heavy drugs used to treat bi-polar which I never took based on a gut instinct that it was an incorrect diagnosis. We would later use our gut instincts again when Andrea's tumor was misdiagnosed as a calcium deposit prior to a diagnosis of a serious and out of control malignant tumor.
#4 Making friends with those that know the insurance process.
Andrea's five year battle with her treatments would eventually force us to sell our home and drain our savings to pay our way out of the insurance nightmare that seemed never-ending. We learned in the process that as a patient, you are battling on two fronts. One is your health, and the other the cost of the care. Andrea's experience made us well prepared for my official diagnosis of MS. We knew from the beginning of my diagnosis that we needed to be sure all treatments and related expenses had to be covered to avoid getting bombarded with out of control costs. It's a sad reality that when facing life-changing and sometimes life-threatening diseases, there's a business element that falls on the patient and caregivers to manage. I highly recommend getting friendly with the folks that work with your insurance provider. They can save a lot of money and headaches, which is key in times of need.
#3 Staying focused on the long term outcome is often hard but necessary.
Andrea's surgeries became a well-practiced game. After the third or fourth hospital stay, we knew what to expect within reason. It seemed like everything was reactionary at the time, but what we learned helped us hone our preparations for the long run.
For example, we knew Andrea would have a LOT pain management medication. Some of these medications have nasty side effects. We learned to pack fresh ginger to calm her stomach due to the nausea from both the pain medications and anesthesia during her hospital stays. We also learned to take a notebook and track all of her drugs in the event the hospital staff lost track. Staff are human, and they are not perfect, things happen, and on several occasions, we had to refer to our notes for her medications.
While the day to day seems tedious, overwhelming, and depressing, in our case, we found it helpful to focus on the positive aspects of the recovery to give us something to look forward to. These learnings would and still do play a big role in my ability to find the courage to take life-altering drugs for my Multiple Sclerosis.
I stay focused on being well for my son, and my family and the drugs play a part in that. However, they are costly and require many MRIs and lab tests to continue. It would be nice not to have to deal with it all, but the long game is to halt the progression of my MS.
#2 Finding the RIGHT support group is more important than finding any support group.
As Andrea and I both learned, support groups, come in many shapes and sizes. Andrea's first cancer support group tainted her opinion of general support groups, but she would later find a good fit. What we learned was that it is ideal to find groups with people that have similar disease progression and lifestyle situations. As an example, I can't relate my struggles with MS to others who do not have kids, who deny medication, or rely on things like CBD to be the cure-all. My toddler defines my days, especially since he cannot attend school right now due to COVID. I also have no choice but to pursue drugs to cease my MS progression because of the severity of my particular onset. As for CBD, it may help others, but I need stuff with statistically proven results today.
#1 The biggest mental challenge of my life.
Our medical systems has its flaws, but it is full of incredible science and people.
After 10 years of seeking my diagnosis of MS and helping my wife beat cancer, there is still one area where I think our health care system could use some significant improvements.
As a country, we lead the way in helping cure cancer and other serious ailments, but what we lack is the mental health support needed to support patients and caregivers.
While Andrea toughed out her cancer surgeries, like our health providers, we focused on fixing the physical issues. Those physical issues are apparent and can be corrected and tracked accordingly.
Where we failed to prepare, was the mental stress and anguish that would come with her serious illness. When she began to suffer, we felt alone in finding help. Depression and anxiety alone are terrifying, and if these issues go unaddressed, they can impact physical recovery negatively with increased infections and atrophy just to start. In the case of Multiple Sclerosis, a recent study discovered stress has proven to accelerate the disease.
I believe that recognizing and treating the mental struggles that come with serious illness is 90% of getting through the battle. Once I received my diagnosis of MS five years after Andrea's first of ten cancer surgeries, Andrea and I both felt well prepared to take on the unknowns of treating MS. We felt confident in our decisions in doctors, medications, and counseling. These are all hard lessons to learn until you go through them, but once you do, you never forget. In that respect, it's very empowering.