When I really think about it, I realise that my illness might have been gradually progressing for several years.

I’m not really sure when I started getting the itching under my jaw. I hadn’t started university yet, so it was definitely before 2015, but that’s as much as I can say. I didn’t really pay it much attention at the time; I couldn’t even pinpoint what was causing the irritation. It could have been my eczema, or it could have been hirsutism from my recently diagnosed Polycystic Ovarian Syndrome (diagnosed 2011). It was kind of a joke among my family, the way I would dig at my jawline with my index finger. I couldn’t really blame them for laughing – sometimes I would scratch so vigorously that I felt like a dog scratching with its leg.

Sometimes when my allergies acted up, the itching would spread to my nose, throat and ears. When that started happening, I figured it was due to an allergic reaction. I could sometimes calm the irritation with a dose of Piriton. It never completely stopped, though. I’ve been going at it for so long, that I have small rough patches on my neck where I usually scratch.

While my itching remained a mystery for many years, as it got worse, I was able to gradually decipher what was exactly going on.

In September 2017, my allergies suddenly got worse, when I seemed to develop a pollen allergy. I began sneezing almost constantly, and I think the constant stimulation to my salivary glands exacerbated whatever had been causing the itching for all those years. I can’t be sure that the itching got any worse, but I started experiencing near constant swelling under my jaw. At that time, I thought that it was my tonsils that were swollen, and so I was going to the doctor almost every month, getting antihistamines and antibiotics. Obviously, it didn’t really help much. At best, I would feel better while on medication, and then as soon as I came off it, my symptoms would return. At one point, I was actually planning to have my tonsils removed in the summer of this year.

The progress of my illness hit a plateau until April or May 2018, when I started noticing new symptoms.

I would notice that when I started scratching, inside my mouth felt swollen and tasted weird. After spending some time pressing on the gland, saliva would gush into my mouth, and gradually the situation would improve. Within a week or two of noticing this new development, I started pulling some white, stringy substance out of my mouth before the saliva gushed out. I can’t explain what I felt, but there was a distinct feeling whenever one of these white threads would present in my mouth. One time, I rushed to the mirror when I felt the sensation, and lifted my tongue. I saw a white thread peeking out of my Wharton’s duct. I grabbed it and pulled it, and it slid out of the duct, with little resistance. I remember feeling extremely grossed out. At that point, I abandoned my allergy theory, and became convinced that my salivary glands had been infested by worms.

Around the time that I had come to this conclusion, I found a particularly good doctor at my school’s medical center. He ordered an ultrasound of my neck, which came back completely normal, except for what he described as a node on my lymph nodes. He assured me that it was very likely benign, and due to continuous infection. He assured me that if there were worms in my salivary gland, they would have shown up in the ultrasound; however, by this time, I had collected a number of them in a pill bottle, submerged in rubbing alcohol, and I wasn’t convinced. He didn’t have enough evidence to have me referred to another hospital’s microbiology unit for testing, so I returned home to continue my own research.

By this time I had come across several online forums where people were discussing symptoms similar to my own. I had seen Sjogren’s Syndrome mentioned many times, so I decided to look into that possibility. After searching my symptoms along with the term “Sjogren’s Syndrome” I found a few articles written for the newspaper by a local dentist.

Eventually, I made an appointment to see her. She found my case pretty engaging, and for the first time, I found someone else who was as interested in my gland threads as I was.

She actually took one of the threads out of the bottle with an instrument like a pair of tweezers to get a closer look at it and take a picture. Unfortunately, because they had been stored in ethanol and not formaldehyde, they would have been broken down too severely to be studied. However, the dentist hypothesised that the threads were probably uncalcified material that was periodically blocking my salivary glands. Through her, I got a referral to an oral surgeon, who had me do an x-ray and a CT scan.

However, like the initial ultrasound, all of the tests came back showing nothing wrong. In fact, the report from my CT scan explicitly stated that everything was normal, including my thyroid gland, my lymph nodes, and my salivary glands and ducts. The only thing of importance that my oral surgeon could show me was diffuse edematous swelling in the tissue around my jaw. He explained that if there was uncalcified matter in my gland, it would show up in an MRI, but because everything appeared normal, he didn’t think it was necessary to prescribe the test. Also, he noted, it was very unlikely for me to have stones in both glands, as both glands were affected.

So now I’m here – waiting to get tested for autoimmune disease to explain my continued swelling.

While I don’t know exactly what is wrong, I do understand now what is happening in my mouth. Some kind of material is coming up into my salivary ducts and blocking them intermittently. Due to the thick, stringy mucus that sometimes comes up, I have hypothesised that it must be especially sticky mucus that has become bound together. I imagine that the long stringy shape is caused by their journey through the duct.

When this matter moves into the duct, saliva backs up and causes swelling. The itching that I’ve been feeling is actually the sensation of the distension of the gland and the duct. While it has almost never been painful, I do sometimes feel a great deal of discomfort when the blockage moves into the narrow ducts. Through scratching – or more recently, stroking the gland – I can force the saliva out until enough pressure builds up in the duct to force out the blockage. Sometimes this can be difficult to do, and the duct becomes swollen and tender due as the obstruction stays put for hours.

Online, there are a number of home remedies for stimulating the duct, but as you will read in my next post, sometimes this might cause more problems than it’s worth. For now, I try to increase my water intake whenever I notice that the gland has been blocked, and that seems to help it to flush more easily.

In my next post, I’ll talk about the worst episode of swelling that I’ve had to date, the catalyst that inspired me to finally start this blog.