Navigating a Diagnosis
The onset of an illness, obtaining a diagnosis, and deciding what to do with all that information can be anything but, easy. Here is my story.
My life changed overnight
Back on Thursday, January 18th, 2007, just 24 years old, when I woke up and realized the entire left side of my mouth, even my tongue, was numb. It was weird, I brushed it off, got ready for work, and hit the road. On my drive to work, that odd numbness started spreading, now engulfing the entire left side of my face. Even my left ear began became very hot and red. It was bizarre, to say the least. About an hour later, my arm joined the party, going numb along with the rest of my left side. Panic set in, and I called my mom, convinced I was having a heart attack or stroke. She assured me I was fine, that I was most likely having a panic attack, and she’d be right there. I was scared to be alone.
By the end of the day, the numbness settled into half of my head, including my tongue which left me with no taste on that side along with the numbness, and an “off” center of gravity. Like I was walking on a slant, that also made me nauseated. But, I was “OK” and we had begun brainstorming what could be wrong. My sister had Bell’s Palsy, maybe it was that? Or, my wisdom teeth pushing on a nerve? Maybe it was a virus? My wheels were spinning.
A quick sidenote: I attribute my fast-track to diagnosis (6 months is very quick) to a few lucky coincidences that I will forever be grateful for.
A dentist appointment that was coincidentally scheduled for Friday the 19th, the day after my onset of symptoms, which was the catalyst. A routine teeth cleaning, figured I’d go. When the dentists saw me, he refrained from treating me and sent me to an oral surgeon immediately.
My parents were hosting a Greek neurologist at the time who was completing a fellowship at UCLA. I will forever hold him in my heart, he treated me with such kindness. The very first day, he gently urged me to see a neurologist, without freaking me out. Told me it was unlikely Bell’s Palsy, maybe a virus, but definitely something neurological and I should go get it checked out asap. He also played a pivotal role in the first weeks of my initial flare up, reading MRIs, explaining results, blood tests, disease, and so forth. It was a blessing.
Back to the story…
The next day, a day that's etched in my memory forever, hearing for the first time, "this might be MS." I'll never forget that moment. I can still visualize the room at the oral surgeon’s office and picture myself in that chair recalling the doctor walking in, grilling me with questions: "This is serious. Do you take care of yourself? (no) Do you drink? (yes) Do you smoke? (yes) This could be MS; you need to see a neurologist. I can't help you."
My immediate reaction was to burst into tears. And so I did. Tears immediately began streaming down my face. Frozen, not knowing what to do, I sat as overwhelming emotions took over; panic, shame, fear, confusion, guilt. Did I do this to myself????
My first question, "Am I going to die?". At that point, having no clue what MS even was, my main concern was living.
Thankfully, the doctor softened upon seeing my reaction and did me a major kindness. He called a friend who happened to be a neurologist and squeezed me into his schedule that very day. For those who've been in my shoes, you know how rare it is to score a same-day neurology appointment. It just doesn't happen.
Something is wrong with my body, please help
And so began my journey toward a diagnosis. On Friday, January 19th 2007, I found myself seated in a neurologist's office, desperately waiting for answers. Instead of answers, he gave me this to-do list:
Get an MRI of the brain and spinal cord
Get a spinal tap
Based on what the doctor observed, here were my options:
Instead of a definitive answer, I had these lovely options. Not the answers I was looking for. Specifically, the brain tumor.
I was anything but calm as the doctor began to go deeper into explantation. At the end of the appointment he prescribed me Xanax after observing my state. He told me I needed to remain calm, but my immediate response was I can't. I can't calm down. Calm felt like another planet at the time, totally unreachable.
From that appointment we drove home, went to CVS, and filled my prescription. Sitting in the car while my mom went in, being in no shape for the public, completely devastated by the news, with emotions so intense they turned into numbness. Not only was my body numb physically, but emotionally too. A “devastation haze” of sorts, came over me.
Before I knew it my whole family, extended family too (cousins, aunts, and uncles) began arriving at my house, navigating this shit storm alongside me. When one of us “goes down” ALL the troops show up (picture my Big Fat Greek Wedding). While there were times that I felt alone, the reality couldn’t have been further from the truth. For each appointment thereafter, an entourage of support was at my side.
After completing all the tests the doctor ordered, the spinal tap being the worst, not the procedure itself, but the aftermath. My "flap" didn't close properly, causing spinal fluid to leak. This resulted in the worst headache you can imagine, worse than any migraine. This forced me to remain horizontal for several days to prevent the fluid from escaping; any attempt to sit up felt like someone stabbing me in the head. It was intense, to say the least. The flap finally closed, thank goodness. The MRI wasn’t bad, I’m not claustrophobic, so I just relaxed, closed my eyes, and kept myself calm. I attribute this ability to my years as a gymnast, calming my mind and breathing my way through terrible discomfort. If anything, the MRI increased my impatience, wanting to see the results right away. Lucky for me, there was a neurologist staying at my house.
We sat in the parking lot after my scan, together with my mom, and popped the CD into George’s (Greek neurologist) laptop. He opened the file and looked at my scan. That was the first time a “lesion” or “plaque” on my brain was seen. He very carefully explained to me what he saw. He did this with the utmost care, not giving me a diagnosis, but rather explaining how a lesion in that spot would explain my symptoms. My heart tightened, my stomach dropped, my emotions were frozen inside of me. Something was wrong. This really was happening.
Upon my follow-up appointment (alongside my mom, dad, aunt, sister, cousins, and boyfriend) my expectation was answers. I'd done all the tests they requested, “followed the rules”, got the MRI, did the blood work, the spinal tap, they must know what was wrong with me, right?
Navigating opinions, information, and emotions
This portion is a blur of sorts. So many doctor appointments, filling out form after form, lots of driving, lots of waiting rooms, lots of needles in the arm, and so much information coming to me at once. And the opinions, how can I forget that, everyone had one, having seen 4 or 5 neurologists, including Dr. Norm Kachuk from USC Keck School of Medicine, that specialized in MS. He was “the best”, apparently.
In addition to the external overwhelm, I was also battling a wide range of emotions internally, many new to me at the time, as I was trying to navigate the storm I was in. There was a lot of emotions to sort through and I had a hard time finding the right person to turn to at first. Feelings of isolation were common place.
Thankfully, I quickly accepted that rather than having one person to share all with, I had multiple people to find different types of solace in. To share different pieces of me, different parts of my experience. And it was in the moments that I least expected, sometimes talking to someone I wasn’t particularly close to, that I’d have the biggest emotional releases. Even though I was trying to “keep it together”, there were times I simply couldn’t.
In the meantime, the doctors prescribed high-dose steroids (Solu-Medrol) intravenously for a week, followed by a few weeks of Prednisone, an oral steroid, to help alleviate my symptoms. I had a port in my arm for a week, and a nurse came to my house daily. It was a significant change from my former life.
Every neurologist I consulted had their different take on my symptoms. There are certain sets of criteria you must have to get a diagnosis. I didn’t meet the criteria. One physician proposed a wait-and-see approach, unsure if it was truly MS. This option, to me, felt like the least desirable not willing to merely wait and do nothing. My confusion peaked, especially as a 24-year-old with no prior serious health issues, needing to do something, but not knowing what that was. I knew my body needed me, I just didn’t know how to be there for her. It wasn’t something that I had learned how to do yet.
This went on for almost six months. My family and I drove all around Southern CA searching for answers, trying to decide what to do. It’s really a strange feeling, to seek a diagnosis, saddened when you don’t have one. A mind-bender, to say the least. I’d find myself second guessing my feelings - why couldn’t I be happy that I may not have MS? Why was the prospect of this being something else not acceptable? What’s wrong with me that I want a diagnosis?? Shouldn’t I be grateful I’m not getting diagnosed?? But, now, I am grateful for my tenacity and trust in my gut, I knew something wasn’t right, and was determined to figure out.
We spent countless hours discussing and debating the options, the possibilities, how I felt, and what we should do. I spoke with others who had been diagnosed with MS, did the basic Google search, bought books, and took a deep dive into the world of MS by whatever means was offered to me. At the time, there was no Instagram or TikTok, there was no mainstream talk of wellness, inflammation, gut health, and the like. One couldn’t search the hashtag #MS and find a community of people to lean on. It was a real grass-roots approach to creating a network of support, I had to lean on the people I knew, who they knew, and so on.
My official diagnosis came from Dr. Kachuk. Although diagnosing me with MS, he gave me one final option to further confuse me. He suggested I participate in a study for Clinically Isolated Syndrome (CIS), a condition that at the time raised questions about whether individuals with a single brain lesion might not actually have MS. This idea intrigued me since I indeed had just one substantial lesion responsible for all my symptoms. It was a departure from the norm, as many people with MS develop multiple lesions before their first episode. However, the study didn't quite align with my goals. The prospect of receiving a placebo didn't sit well with me wanting to proactively address my disease, not take more chances. To stop my MS in its tracks. But the study sounded promising as well? Maybe I didn’t have MS? Do I participate in the study or start medication? I was in need of guidance.
I went back to a doctor that I met in Santa Barbara, Dr. Delio, my favorite of the bunch by far, to ask him his opinion. His bedside manner was a breath of fresh air. He spoke to me as a human rather than a clinical subject or potential liability. My case was far from black and white, and the answer wasn't evident. At this critical juncture, he provided invaluable advice, simple and straight forward and deeply impactful. When we (my family and I) asked him, "What would you do if this were your loved one?", his response became my compass. He recommended starting the medication, believing that, at my age, the risk of disease progression outweighed the potential downsides of the medications. Best-case scenario, I could start the treatment, and if, in 3-5 years, I remained flare-up-free, I could discontinue it. If I had another episode, then it only would confirm the right choice was made, treating the disease as soon as I was able. This decision finally felt right – reasonable, practical, and most importantly, real. It was a plan I could stand behind.
I finally had my answer, a diagnosis. I could finally take action. Next steps, choose which disease modifying drug to take.
But I’ll leave that story for another time.
In the meantime, I’ll leave you here with this:
Over time, I managed to reclaim my life. I began to feel better.
I shaped my own experience with MS, creating my own story. And that's the part of my journey I love to share.
There is hope. There is a light at the end of the tunnel, believe me. And if you need support, I'm always here for that, just a message away anytime, here to let you know that I've been through it. I understand how you feel, and I'm sorry that you (or your loved one) are going through this.
Take a deep breath and know that it's going to be okay. You will make it through this difficult time. This is just one small part of your journey, albeit a grueling one at times, but still just one part. You can and will overcome it. And if you don't feel that way right now, that's okay too. I know from experience the relief you're seeking is on the horizon. Have faith and take it one step at a time, one day at a time. Don't give up. You'll get there by continuing the work, one day at a time.
This is just one chapter of your story. You have so many more to write. This isn’t the end, but rather the beginning. Keep writing your story, don’t let it end here.
You’ve got this.
I do offer 1-1 coaching sessions if you or your loved one are in need of deeper support. Please email me at firstname.lastname@example.org for more information.
You can also read more about my story here.
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