I rushed so I wouldn’t be late for my appointment but instead arrived twenty minutes early. I circled the block a few times and parked a few minutes away by the harbour. I was in no hurry to wait inside, too much time would invariably send me out the door. I stared out the windshield at the depressing grey skyline and contemplated how I would broach the subject. As my thoughts drifted, rain drops silently distorted my view of the boats in the marina. This melancholy day set the appropriate tone for my head space.
Today’s appointment is my first real attempt to decipher the symptoms that have plagued my body since University. Now, in my early 40’s, the list of plausible excuses for my physical and cognitive decline has been exhausted and I fear discovery. My family has long considered me a hypochondriac, despite being blissfully unaware of the majority of my symptoms. I can no longer justify my extreme fatigue and bizarre symptoms, I want to run from the hell that is my reality…the jig is up.
I can no longer hide from the inevitable question…do I have MS?
I sat in my doctors office, unsure of how to start the conversation. I rehearsed over and over in my head how to initiate the dialogue…how does one casually ask to be tested for MS? I spent the last two days writing out my symptoms, providing specific examples of falls, muscle spasms and weakness- all to justify my appointment.
My goal for diagnosis is simple…reassurance that I am not losing my mind. My body is failing me and I need something tangible to define these changes…I need to be taken seriously. I’m up for the challenge, I have been dealing with it for the better part of two decades…it just hasn’t been labelled. I’m an organizer, I need to plan for progression and more than anything I need to know for my children. I see the reality of progression in the body of my Father and my greatest fear is the risk for my daughters.
I have known since I was 20 that I have an autoimmune disease, it has always been the only rational explanation. My symptoms have been sporadic and easy to dismiss by virtually everyone, including myself. I was happy to settle with being labelled as anxious by my previous doctor- being defined by the catch phrase of my generation is somewhat easier to accept than realizing that my body is dying from the inside out.
My doctor walked in and I rambled about my plethora of symptoms and my suspicions about MS. She has only been my doctor for a year so I had no idea how she would respond. She thoroughly read my three page description of symptoms and was supportive of my decision to investigate. She ordered a long list of blood work, an ecg and a brain MRI. As well, she referred me to a Neurologist in the city. It’s hard to believe that I could be excited about searching for a diagnosis, but I am. There is something incredibly freeing about choosing to no longer live in denial.
My doctor wasn’t entirely convinced that I have MS, she felt it could also be a number of other connective tissue disorders or other autoimmune illnesses. Regardless of the outcome, she is committed to finding answers. It was the first time in twenty years that I felt heard.
I hope you will follow me on my journey towards disease. It isn’t a question of if but a question of what…and so begins the journey.