Do you remember the movie Terminator 2? Poor Sarah Conner. She knew that there was an alien shapeshifter prowling around, and no one believed her. Actually, they thought she was a bit off-balance, and locked her up.

One of the most puzzling (and scary) symptoms that I’ve experienced since my foray into the world of autoimmune disorders has been my continual sore throat. I now know that it is an inflammation of that sly cricoarytenoid joint, oh so elusive, but like an alien shapeshifter, hiding in plain sight.

Having a sore throat for months on end, starting prior to what we here in Houston would consider full-blown allergy season, is just not normal. Back in January, when the rest of my Twilight Zone symptoms started kicking in, I started to experience a lot of strange throat issues:

• Feeling as if something was stuck in my throat
• Throbbing sensation deep in my throat
• Back of throat red and sore
• Persistent, annoying, small cough
• Occasional difficulty breathing / shortness of breath
• Voice strain and hoarseness

In the “trust yourself and your symptoms” vein of thinking, this was something new for me. I’ve never suffered before from either allergies or acid reflux, although each new doctor that I visited with about this was fairly insistent that it was one of these two issues. The ENT doc was downright rude, and literally laughed in my face. “Dude, that’s acid reflux.” Yes, he called me “Dude”. I would love to go back and wave my picture-perfect endoscopy report in his face, but there doesn’t seem to be much point in it. When did doctors stop listening to their patients, and assuming that they were always right??

I persisted in getting quite a few diagnostic tests done to try to figure out what the issue was. My issues, combined with terrible fatigue that I was experiencing had me seriously concerned that I had throat cancer, or esophageal cancer.

A couple of weeks prior to my scheduled endoscopy, I stumbled across an article over at RA Warrior about inflammation of the cricoarytenoid joint in RA patients. Who knew? (Certainly not my ENT doctor – call me crazy, but shouldn’t he as a throat doctor at least been aware of this issue?)

I’m quoting directly from Kelly here:

Rheumatoid Arthritis can affect the larynx in several ways. There are joints amid tiny bones (actually made of cartilage) called the cricoid and the arytenoid within the larynx. Oddly enough, the joints are called the cricoarytenoid joints.
These joints can be attacked by Rheumatoid Arthritis, just as other joints can. Sometimes, RA
 creates an erosive mass in the joint. Nodules may form on the vocal cord tissues which are similar to nodules on other joints. Inflammation in the larynx can lead to vocal cord fixation or vocal cord immobility.

Kelly O’Neil, RA Warrior

Anyway, it’s a thing, and it’s called CA, or Cricoarytenoid Arthritis. My Sherlock Holmes-like powers of deductive reasoning (along with my embarrassing number of diagnostic tests and agreement from my rheumatologist), have led me to the conclusion that this is what is causing my mysterious throat issues. It took me a while to get there, but I’m glad that I persisted. I feel better knowing that it’s not cancer, and that there’s a reason for my pain and discomfort. The medication that I’m currently taking should help to reduce the inflammation in this series of little-known joints.

Meanwhile, I’ve been reading the stories of other people with RD (rheumatoid disease) who have experienced this issue. The official medial literature would indicate that this condition is “rare”, but apparently it’s not really as rare as all that. The stats are all over the map, but I’ve read that at least a third of people with RD experience this issue, and that almost 75% of autopsies done on people with RD show some CA activity. The RA website “comments” section shares the stories of hundreds of patients who have experienced CA. Reading those made me feel not crazy after all.

In other words, Hello? McFly? Doctors? Please listen to your otherwise sane patients when they approach you with a new symptom and a laundry list of other new ailments. I’m a reasonable person. Help me come to a reasonable conclusion. But don’t assume that you know what I’m feeling or what my issues are, without at least doing some investigating. And please don’t just try to throw anti-anxiety medication, or tranquilizers at me. I’m not anxious, and I’m not a hippopotamus who needs to be sedated; I’m in pain. There is a difference.

(NOTE: I really do understand that not all doctors specialize in every ailment. But it follows that patients should not be judged – or sedated – for continuing to seek answers.)

Which brings me to my next point. I keep referring to RD as “the Twilight Zone” because there are so many varying and weird symptoms. I can understand why patients would be reluctant to discuss some of the more bizarre symptoms with their doctors. I think a lot of times people with RD are feeling defensive enough when they visit their doctors, after being dismissed so many times, and having so many different symptoms to discuss, that they hesitate to bring up one more strange sounding thing, like this. When I first visited my GP about my illness, his comment was, “Well, you know I can’t visit with you about all of these things today…”, the implication being that I had to pick one and move on.

Eventually my rheumatologist assured me that my issues were a reasonable part of this autoimmune disorder that I’m experiencing, and given my normal test results, I could at least rest assured that I didn’t have throat cancer. I appreciated that.

Sarah Conner eventually stopped trying to convince people that the Terminator was coming. She just went to the gym and beefed up. And then she found some people who believed her, and wanted to help her.

So it goes.