Questions

I’m hoping some of you are willing to share what symptoms led to your diagnosis with MS. I’m trying to read blogs but many are so well established that it’s difficult to find those early posts. I’d really like to hear more about those oddish type symptoms that changed enough or increased in intensity to finally lead you to pursue a diagnosis. I am finally at that place after decades of symptoms and I’m really interested in others experiences.

Thanks in advance for sharing😊

Unremarkable…

It feels like forever since my first post…it has only been 2 months.

My search for answers has gone on for over 15 years, so why do these last 2 months feel like forever? I believe it stems from the enormous feeling of relief that I felt when my physician was willing to pursue a diagnosis two months ago. It’s funny to think that being tested for MS could be a relief but it truly is- I probably sound trite but I know that I have MS, I feel like I have always known.

I have a flashback every once in awhile to my first set of hospital rounds. Our class visited a ward at a regional hospital and for the morning we were all assigned our first patient. I remember every detail of that day like it was yesterday- the dimly lit room, the puke coloured window curtains and an overwhelming smell of spilled urine. I remember the feeling of my heart pounding in my chest and an intense feeling to flee the room. I can recall every detail of the patients appearance, right down to the freckle above his right eye. Most intensely, I remember the fear that I saw in his brown eyes, a look that I will never forget, a look that kept me in his room.

I remember every detail because his illness terrified me- he was 25 years old and he had MS in its most progressive form.

I’m told that MS is difficult to diagnose and every other possibility has to be ruled out. All of my lab work and ecg’s have come back “unremarkable”. This is the part that feels like forever…ruling out every other possibility.

Today was an exciting day as I saw an Ophthalmologist. I have a large number of visual problems that come and go, some are definitely visual, others could be vestibular- more things to sort out. They are all concerning but mostly they are annoying.

My exam today revealed some peripheral vision issues and what appears to be slight swelling of my optic nerve. Next stop is an eye ultrasound, an evoked potential test and additional peripheral visual field testing. My vision and the structure of my eye are both“unremarkable” and that is good news.

I am hopeful that todays visit will speed up the process for my MRI.

My thoughts on waiting…“Unremarkable”

Tick Tock

Time seems to stand still when you are waiting for answers. I think it’s the hardest time for me because it seems to be the time that my mind is at its busiest.

Step 1- Doctor Appointment,  Explain Symptoms, Ask For Help  ✅

Step 2- Blood work, Electrocardiogram (Search for causes other than MS)

It felt good to take another step forward in my quest for answers. I may not be able to control my body, but I can control the speed that my lab work gets completed. I planned to visit the lab first thing in the morning because physically and cognitively it is my finest time. As the day progresses, my body warms up and my brain tires, which is me at my worst…not a good time for lab work.

I decided to go as soon as the lab opened…that was a mistake. I arrived to find a long line of people standing outside. The line was filled with patients that had been fasting, as well as elderly folks that needed their INR tests completed. Eventually, the lab doors opened and they herded us in like cattle to a small waiting area. The room smelled of rubbing alcohol, unbathed bodies and the unmistakeable scent of perfume favoured by an older generation. I covered my nose with my sweater to muffle the noxious smells. I hate waiting rooms.

There is a certain amount of vulnerability about publicly waiting to get lab work done. Nobody was there just for shits and giggles. I felt a bit of shame and much like a voyeur as I heard each person check in and answer confidential questions about their health. My eyes nervously skirted the room as I waited. I was careful to avert my eyes from the gaze of the other patients in the room. If nobody saw me, then I wasn’t there. Each time the door opened I prayed that nobody I knew was entering the building. I needed a level of anonymity as I searched for my truth.

After 40 minutes, I was elated to see my name on the waiting room queue… the overhead screen indicated that I only had an estimated wait time of 22 more minutes. At least I would only be two hours late for work…sigh…time stood still.

They directed me to a room to lay down for my lab work. I had fainted in the past so I was considered a liability. I didn’t mind being sent to a different room, it got me out of the very visual and smelly waiting area. In fact, it felt like a Cadillac type service compared to the usual procedure. I was lost in my thoughts when the technician asked me to undress for my electrocardiogram. It was then that I noticed the 8 collection tubes filled with my dark red blood- did I faint again? The only thing I felt was the pinch at the end when she took the butterfly needle out of my arm.

The electrocardiogram is a one of those non-event, painless procedures that sounds like you are getting a lobotomy or something. It takes longer to hook up all of the leads than it does to run the one minute test. The last time I had one done was ten years ago when I raced to the ER fearing a heart attack, which in hindsight was likely a MS hug.

Throughout the day I nervously logged on to the lab website to check my results. The majority of the results were posted by dinner time. They showed no obvious underlying infections, zero signs of inflammation, my thyroid is working well and my ferritin is the highest (although still chronically deficient) it’s been since I started menstruating. My electrolytes and liver function tests- all normal. Clearly, the vitamins I take have helped because my magnesium was at the high end of normal and my B12 doubled from my lab work two years ago. A B12 deficiency would have been a welcome relief as an explanation for my symptoms, I had hoped that this would be my truth.

How could everything be normal when I feel so abnormal?

My double strand DNA and ENA results came in later that night- all negative- “no antibodies present”. The lab tests ruled out Lupus and any connective tissue disorder. And just like that, in one day, it appeared that my symptoms are neurologic in nature. My gut already knew that truth but one can’t help but hope for a different outcome.

Once again, I am out of the drivers seat as I wait for the brain MRI and further neurological testing.

tick…

          tock…

do i have ms?

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.