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How Unknown Chronic Illness Can Make Bad News Into Good News

Well hello there! I’m glad you’ve stumbled upon this article. I hope it proves to be exciting, intriguing, or if you need it to be, a small distraction from the chaos around you. As with many of my articles, the title may sound a little weird, but it grabs attention and makes this a little more interesting, right? I’m going to explain why, and how, bad news can actually be good news if you have a chronic illness without a name.

If you’re new to reading my articles, I’ll give you a very short version of my life: it all started with depression about a decade ago. That led to bipolar disorder II, anxiety, and ADHD diagnoses. Because of the medications I was taking for my bipolar disorder, I developed a movement disorder that gave me facial tics called tardive dyskinesia. I eventually developed another, unknown, movement disorder that currently gives me uncomfortable muscle contractions in my arms and makes it difficult to walk (so I have a pretty stylish cane that keeps me company wherever I go). That’s my current situation: fighting mental and physical battles in every moment of every day, but by far my uncontrollable movements are my most annoying challenges, and without a clear answer as to what is causing them, it’s frustrating. Or, rather, I should say it was frustrating.

I’ve dealt with movement disorders, to one extent or another, for about three years now. It started with those facial tics, hard blinking and eye rolling mostly. Then this past summer, I lost my ability to walk due to an unexplainable episode of ataxia (loss of muscle coordination). A couple of months ago, my newest tics (arm flapping, swinging, tremor, gait disturbance, etc.) all started, and it was nothing short of confusing. All of my doctors were perplexed and didn’t have any great ideas of what was going on. I’ve had almost every blood test conceivable done, multiple brain scans, and physical evaluations, and for the longest time, nothing made sense.

For this entire time, I’ve constantly talked to my therapist about how I’ve gotten to the point where I don’t care what the explanation or cause is of the things I’m experiencing is, I just want to know. No matter how minor or severe it is, how positive or negative the prognosis would be, I just needed an answer. My therapist, who has experience with people with chronic illnesses, says that that’s a totally normal mentality while continuing to hunt for answers. Well, after three years of mental and physical illnesses, we may have something to explain all of it.

Every time I’ve had blood work done by my regular doctors, they usually include a test for my thyroid. A couple of years ago, one of my psychiatrists noticed that my thyroid was just slightly underperforming (also known as hypothyroidism). It wasn’t serious enough to treat, but something that I needed to keep my eye on. Almost every blood test since then has shown the same thing: a slight case of hypothyroidism. That certainly wasn’t enough to explain my psychiatric disorders, and the last time I really had a thyroid test done was before my more severe movement symptoms started. Honestly, I forgot about the thyroid problem because it was so minor and I had kind of pushed it away in my mind as irrelevant. However, it seems my thyroid may be a bigger player in my situation than originally thought.

My neurologist ordered the largest round of blood tests I’ve ever had in my life (they took 12 large vials of blood, so I was a little lightheaded afterward, to say the least). She said she was “throwing the book” at me, looking for anything and everything that could be wrong. Most of the results came back normal, but for some reason, a portion of the tests were delayed in being delivered. After the first chunk of results came back, and they were all normal, I lost a bit more hope of ever finding an answer. I didn’t expect the last couple of tests to turn anything up. But you know what? That’s exactly what happened.

My doctor had put a thyroid test in this blood work, but a different kind of test that I had never had done before. The standard thyroid test is called a TSH test (stands for thyroid-stimulating hormone). It’s an important test for monitoring the base function of the thyroid, a butterfly-shaped gland in your neck. Hypo and hyperthyroidism are generally diagnosed based on this TSH test. However, my neurologist also tested me for my body’s immune system response to my thyroid. Essentially, was my thyroid a target of my immune system, causing it to improperly function? That test came back very out of range, showing that in fact my body is “attacking” my thyroid.

This is an autoimmune disorder known as Hashimoto’s thyroiditis. It can explain my psychiatric disorders to an extent, but what does it have to do with my movement disorder symptoms? Autoimmune disorders are challenging and dangerous, as they can spread to other parts of the body, beyond what they normally impact. While this is currently just a theory, and will need to be confirmed with more tests, there is a condition that could explain my psychiatric, neurological, and hormonal health challenges all in one: Hashimoto’s encephalopathy, or HE.

A lot of big, weird words so far. HE, sometimes also referred to as a SREAT (steroid-responsive encephalopathy associated with autoimmune thyroiditis), is a rare, somewhat controversial, condition that isn’t well understood in the clinical or research worlds. In a nutshell, it is an autoimmune disorder that affects the thyroid, but also takes a toll on the nervous system, and induces neurological symptoms such as depression, mood swings, cognitive impairments, and in some limited cases, movement disorders.

Now, like I said, nothing is definitive yet. The test results very strongly show evidence of Hashimoto’s thyroiditis, but I’ll need my other doctors to concur with my neurologist’s evaluation since this isn’t her field of expertise. SREAT is more in her ballpark, so we are continuing to explore that possibility, but more brain scans are necessary to make that determination. But what does all of this have to do with what I said was the purpose of this article?

For years, I have been left frustrated and dissatisfied with almost every doctor’s appointment I’ve had since I’ve never been given a promising lead on what may be behind my health challenges. After years, I finally have something! I have a potential diagnosis, or diagnoses. They aren’t preferable answers, as none of them are curable. But they are treatable. The prognoses can vary from person to person, and if I do have SREAT, it is such a rare condition that little is known about treatments and prognosis. But at the end of the day, I just want something: a name. I want a name of what it is I’m fighting. I want to know who my enemy is, and what in my body is off-kilter.

For now, I still don’t have any set answers. But I am much closer than I was a week ago. I am monumentally closer to an answer than I’ve ever been. And that’s why the potential diagnoses, while they are somewhat negative, are actually good. A life with struggles and no answers is more difficult than one with struggles and answers. And now, I have hope for a life with answers.

Getty image by Dmitry Belyaev.

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