PRE-DIAGNOSIS
Everyone asks… How did you know? What made you think something was wrong?
I truly believe it was a “GOD THING”. 100% God Blessed the situation, my mind, and my doctors. God intervened, and I listened to his signs & direction to get help.
In October 2019 I started having issues with vertigo and dizziness. I had 5 days straight where I struggled with balance and keeping the room from spinning. I went to Urgent Care, they said it was just Vertigo. I was sent home to rest and take some nausea meds, and that was that. It eventually passed.
In November I started feeling… DIFFERENT again. I was tripping more, my words & numbers would get jumbled, I had tingling in my legs, feet, and mouth. And worst of all, the chronic ringing in my ears. It was like a whistle was blowing in my ears at all hours of the day and night. Nothing would help and I was growing more and more self-aware of the changes.
By early December, I had made a list of 15 different issues ranging from fatigue and speech issues to numbness and spasms. I had initially assumed it was just life, stress, and being over-worked and my lack of coping and stress management skills. UNTIL December 6th, when I listed to the Podcast “Hidden Brain” in an episode where a woman was experiencing similar issues to mine. HIDDEN. SILENT. CREEPING symptoms. Unknown and unseen by others, but very obvious to her. She was incredibly self-aware. She LISTENED to the signs her body was sending her. She was diagnosed with ALS (Lou Gehrig Disease). Suddenly the phrase “self-awareness” was all I could think about.
On December 12th, I was sitting in office when suddenly something clicked. I put the puzzle together. I linked the connections. BAM! PANIC ATTACK. I became overwhelmed by the knowledge that something was wrong, and it was time to put a name to it. Sure stress and anxiety were at the top of my list of “let’s hope that’s it”. However, I was already given a sense of peace that my battle was just beginning that day.
December 16th, I meet with a general practitioner (GP). This GP agreed, something wasn’t right. At this point I am struggling to keep my balance if my eyes are closed, and I am stuttering over simple words. And THE RINGING IN THE EARS! Oh the ringing!
This doctor allowed me to be in the drivers seat and push for answers, which I appreciated. He understood that I was going to be passionate and self-advocate at every turn. Within two weeks we had MRI’s and a directional diagnosis.
ALS: Not likely.
LUPUS: Maybe….
MULTIPLE SCLEROSIS: The leading likelihood.
The holidays came and went. I did my best to focus on the reason for the season. I told my immediate family about the initial information, and the next steps, but kept it light. I wanted to focus on the final days and weeks of 2019. I had already resigned to the fact that 2020 was going to be a year to remember.
January 2020 was a whirlwind. Life was changing so quickly. The holidays were a blur and the symptoms were NOT subsiding. January offered me a whole new suit of doctors and a care team. “A CARE TEAM…” that was a term I thought I’d only use in my old age… yet here I was. MORE SCANS. MORE BLOOD WORK. MORE SCANS. MORE BLOOD WORK. All geared to build a baseline case for the mysterious disease yet to be confirmed / named. Assumptions were stronger and more directional with every test. MS had been all but guaranteed by this point, but still not 100% conclusive.
My family was my rock from near and far. Siblings, parents, uncles,…. you name it… they came to LA to spend time with me, distract me, care for me, love me. It brought so much peace and support to the scariest time in my life. It was a drawn out limbo of days and weeks with no updates. Birthdays, Vacations, and Sight Seeing, all the while, the ticking and ringing in my ears weighing on the question of “what is this?!”
February was spinal tap month. February 15th. Spinal Tap Time… the only conclusive way to diagnose MS without a massive relapse or hospitalization according to my neurologist… I demanded an immediate diagnosis, so I scheduled my spinal tap for the earliest date. My spinal tap was intense. They nicked a “peripheral nerve” whatever that means, so it essentially felt like the needle was piercing through my hip bone during the entire procedure… “WOW THAT’S SO RARE” were there words… thanks doc.
Recovery felt smooth immediately afterwords, but little did I know what fresh piece of unearthly hell that was waiting for me 24 hours later. The spinal-head-aches might have been the worst pain I had ever experienced. Completely and utterly debilitating. I have so much more respect for people who live with Migraines and Tension Headaches. I was useless. Que My momma to the rescue to care for me as I crawled on the floor like a toddler. Nothing could relieve the constant spinning, nauseating, crushing energy around my skull unless I was flat on my back with lights off.
Now…. Waiting…. waiting… waiting…. Results take 2-3 weeks to get back so I had some time on my hands. Prayers. Journaling. Traveling. More Family. More Love. More WAITING.
By the time March rolled around I thought I was ready. I had waited 12 weeks for the official official “confirmation". I wanted to know. I needed a name for the beast in my head. God had been with me from the start of everything… I had faith he’d be there for the next steps…. I thought I’d be at peace. I thought I’d be OKAY. Even if it wasn’t conclusive. I KNEW IT WAS MS. So, what was I so scared of. What was going to change?
Nothing prepares you for a life-changing medical diagnosis. NOTHING.
No one is ever prepared for an impact, even if they see the car coming and attempt to brace for it. No matter what, yo'u’ll never brace correctly or enough.
Charlotte Raejole