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”

MRI Terror

I have been searching for first hand MS experiences on WordPress for almost a week now. I can’t believe the outpouring of support and the warmth from this community- you folks are amazing.

My curiosity has now turned to terror about the brain MRI. It sounds as though it’s bloody horrific!!! I had a spinal when I had my daughter so that isn’t as much a concern for me- I know what to expect.

Any tips for someone who suffers from some claustrophobia. Is there a panic button? Should I request sedation? My doctor said brain MRI but my spine is a huge issue- is that a separate scan?

Thanks in advance for your insights.

Cheers,

Be Still My Heart

Image result for heart beat

Yesterday, as I carefully screened my lab work, my cursor hovered over the final report for my electrocardiogram. The screen said the test was final and that the report had been sent to the Cardiologist for final review. I didn’t think to open it…why would I?

This morning, I logged back onto the lab website to see if my Zinc test had come back. It was the only value missing. Disappointed that it was still missing, I went to close the window when I noticed a small box in the top right hand corner of my screen. I clicked on it and it opened up to a pdf of my electrocardiogram tracing.

To my surprise, there was a notation in bold letters on the front- Abnormal ECG!!!

HOW DID I MISS THIS LAST NIGHT?

I was so consumed by seeing the lab results come in yesterday, that I didn’t even worry about the cardiac as it wasn’t a concern, not at all.

My word…my heart- how could that be? I have a strong heart, everyone always tells me so. The heart of a well conditioned athlete they said. Sure, my heart rate is slow but that is due to my high level of fitness right?

Who am I kidding, my fitness is non-existent. Its hard to be fit when you can’t maintain your balance doing the simplest of tasks and your muscles alternate from tired to spasmodic all the time. I stopped running after multiple drop foot experiences and one major fall. I used to be fit…I miss being fit…

Does this mean that the tightening around my chest, shooting arm pain, finger tingling and jaw pain are actually cardiac symptoms? It makes sense but all tests showed other wise previously. Now, I need to see a cardiologist to rule out heart disease.

I had accepted the possibility of neurological disease, I am not ready for cardiac too…

When it rains it pours…

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.