My struggle with autoimmunity: Part 2 (Diagnosis)

This is a continuation from my last post.

When I met with the family doctor, I described the myriad of symptoms that had been plaguing me for the last six months— from my barren-dry eyes and mouth, to my ongoing fatigue and newly-occurring joint pain.

Describing all of the health issues I had been going through, I expected the doctor to be horrified by my symptoms. But instead, his reaction turned out to be completely blasé. For instance, when I recounted how the joint pain in my fingers was so excruciating, I could barely hold a pencil (let alone write my final exams), he countered, “Maybe you’ve been texting too much?” with a definite eye roll.

Despite his skepticism that I was truly sick and in pain, I must have looked frazzled enough, since he recommended that I take a blood test.

When my blood work came back from the lab, I received a phone call from the family doctor’s office stating that I needed to come back in. That’s when I began to worry; as they say, ‘no news is good news’. So the fact that they had something to tell me made me wonder what was up.

When I saw the family doctor again, he had a very serious composure. He wouldn’t tell me what was wrong, he just explained that he was referring me to a rheumatologist, and that this specialist would review my blood test results in detail with me.

A rheumatologist? I thought. But isn’t that for old people? 

I had to wait several months to see the specialist; unfortunately, the Canadian healthcare system didn’t take into account the severity of my symptoms— I just had to get in line and wait.

My mother insisted on attending the rheumatology appointment with me. By this time, I had turned 20 and was run down by the ongoing health issues I was experiencing while trying to balance my hectic school schedule. The one thing that kept me going was this feeling that it would all be resolved soon.

During the appointment, the rheumatologist explained that I had had a positive ANA result. ANA stood for antinuclear antibodies, and it meant that my immune system was attacking itself. He went on to explain that this meant I had an autoimmune disease, and asked me if I had any family history of autoimmunity. This being the first time I had ever heard of the term ‘autoimmune disease’, I told him no.

The problem, my doctor explained, was he could not tell from my lab results exactly which autoimmune disease I had. From reviewing my symptoms, it sounded like I had a condition called Sjögren’s Syndrome, but my ethnicity and age fit the profile of someone with Lupus. He went on to describe even more serious diseases that I could have; by the time he got to Lymphoma, I was almost in tears.

I would have to undergo a series of medical tests in order to figure out what autoimmune condition I really had. As a result, the rheumatologist was referring me to an ophthalmologist and an ear-nose-throat (ENT) specialist.

I waited another number of months for my follow-up appointments with these specialists. The ophthalmologist conducted a Schirmer-Rose Bengal test on me, which involved inserting small slits of paper between my eyeballs and my eyelids to measure moisture levels, then putting colored eye drops into my eyes to dye the dry spots, so they could be easily identified.

The end result? My eyes were Sahara Desert dry!

The ENT specialist, for his part, took a look at my ears, nose and mouth. Not only had I had an oral yeast infection and dental caries, but I was getting recurrent infections, such as bronchitis and tonsillitis. I also had a salivary gland blow up to the size of a small apple.

The results were sent back to my rheumatologist. Despite not showing a positive result for SSA or SSB antibodies in my blood test, which would have resulted in an immediate diagnosis, the results of my other examinations confirmed that I had Sjögren’s Syndrome.

My struggle with autoimmunity: Part 1 (Discovery)

In 2012, life was pretty much perfect. I was 19 years old, and I had just gotten back from a semester abroad in Spain, where I had spent little time studying, and a lot of time travelling, meeting new people, and practicing foreign languages. Little did I know what was in store for me for the next year of my life.

Upon my return to North America, I started to experience a myriad of strange symptoms that would baffle both me and my doctors for many months to come.

I first began to experience eye dryness. It wasn’t that bad at first- just an eye drop here, an eye drop there. But when I would wake up, my eyelids would be glued to my eyeballs, to the point where I would have to peel my lids off of my eyes, which would be red and bloody from the pain. I spoke with my optometrist about the dryness, believing that laser eye surgery from the year before was to blame.

The strange thing was, as time passed, I began to realize that the dryness extended beyond my eyes- I now was experiencing severe dryness in my mouth as well, and blaming my laser eye surgery no longer made sense. In fact, when I made a trip to the dental hygienist later that year, she scolded me profusely, and pronounced that I had eight (!) cavities. Having never had a cavity in my entire life, this came as quite the surprise.

I found out soon afterwards that not only did I have cavities, but I had developed a nasty case of oral thrush as well. This meant that I now had a yeast infection in my mouth! Horrified, I was sent home with a huge bottle of antibiotic mouthwash, a mouth full of fillings, and a significantly reduced bank balance.

At this point, I was already suffering from a lack of sleep, having to wake up multiple times a night to put in eye drops, and to drink gallons of water to ease my dehydration. But my next symptom would be the “tipping point” for me. I began to experience joint pain in my fingers and toes that was so severe, I could’ve sworn that cutting off my little appendages would have been less painful.

After 72 hours straight of no sleep (due to the pain), I dragged my miserable ass to a family doctor to discuss my health issues. I expected to walk right out of the office with a diagnosis, treatment and prescription for a cure. I did not realize it at the time, but I had just embarked on a very, very long journey.