Is ‘Inconclusive’ Good or Bad? That’s Yet to Be Determined

Inconclusive: one of the most annoying, aggravating, but reassuring words to anyone with complex health issues. Why reassuring? Because at least it’s not negative.

It provides some modicum of validation. Something is showing up on whatever test results have been deemed inconclusive.

Why does it matter?

Many of us in the myasthenia gravis (MG) community, as an example, have spent years begging providers to listen to us. My own diagnostic journey consisted of multiple neurologists, pills to treat symptoms rather than the root (then unknown) cause, seven years before I was finally taken seriously, and another year to confirm my diagnosis of seronegative myasthenia gravis (SnMG).

Why did it take being hospitalized because I couldn’t chew or swallow to get the people who needed to listen to finally hear what I was saying? Because my bloodwork and test results always came back within normal limits (WNL) or inconclusive. I present atypically, even for SnMG. I’m a unicorn in a herd of zebras when the diagnostic criteria say to look for the horse.

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It wasn’t until I received my confirmed diagnosis that the dreaded word “inconclusive” began to give me hope instead. Now, however, since building an amazing care team at the Minneapolis Veterans Affairs (VA) clinic, inconclusive simply means inconclusive. It means that something’s going on. My providers may not be sure about the current or long-term implications, but I’m heard and believed.

So why does all this matter? In August, I wrote about my new symptoms that weren’t related to MG. My primary care physician thought they might be tied to lupus or rheumatoid arthritis, though we were both leaning toward lupus.

Well, guess what. My tests came back. Yup. You guessed it.

Inconclusive.

Some results were indicative of lupus, but the corresponding results were WNL, so no one can say with any certainty if it’s lupus. It’s possible that the immune suppressants I take for MG could be suppressing the inflammation markers the tests look for when it comes to diagnosing lupus. As I have a tendency to say, “Hard sayin’ not knowin’,” which basically means we may never know as long as I’m on these specific medications.

The rheumatologist at the Minneapolis VA determined I likely have fibromyalgia, which can cause severe pain. While I believe there are underlying causes for the symptom cluster we define as fibromyalgia, I’m content with being heard and listened to.

My care team is working together to help me live my best quality of life. We have a treatment plan that hopefully won’t exacerbate the MG, but will help alleviate the symptoms now being attributed to fibromyalgia. The more boxes that can be checked off, the more information my team has, and the better my treatment can move forward.

“Inconclusive” is a hard word. That’s true for the patient as well as those who care for us. It can lead me down a rabbit hole of research, where I dig into the medical journals and peer-reviewed studies, trying to make sense of what I’m experiencing. Trying to find someone else like me.

When you’re already an atypical presentation of a rare disease and throw on top of that a few comorbidities, life can get lonely. My husband, who’s also my caregiver, is there to pick up the pieces with each new puzzle piece we get. “Inconclusive” can be a good thing, even if it confirms there likely is more going on.

However, more isn’t better when you’re the caregiver of someone with a rare disease. For them, inconclusive results mean more work and less reprieve, more household chores that pile up because there’s less time to spend on “normal” daily tasks.

This National Family Caregivers Month, I plan on doing my best to show my husband and caregiver how much I appreciate his sacrifices. Do you know someone who’s a caregiver and want to help them without feeling like you’re prying or overstepping?

• Make a meal so they don’t have to. (Trust me, it means more than you know.)
• If they care for a child, ask if you can learn to take care of their special needs and offer to babysit.
• Send a gift certificate for a self-care activity you know they’d enjoy.
• Provide a gift certificate for cleaning services.

Living with this disease isn’t easy, especially when you’re dealing with the headaches that may come from inconclusive findings. What makes it a little easier is having a great support team, medically, professionally, and personally. I’m thankful that I finally have the support I’ve sought since 2011.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.