The Struggle of Getting a Diagnosis

Lack of awareness leads to missed and lengthy diagnoses.

Straw hats

Even though I have gone on at length over the difficulties I had in obtaining a Sjogren's diagnosis, I feel it still warrants a separate blog post (perhaps, just so I can vent some more). I like to think that by sharing my experience, I can offer at least some information and advice that would prove helpful to someone struggling under similar circumstances.


Document and Communicate Your Symptoms

When I first felt systemic symptoms, I immediately began visiting doctors and specialists. In hind sight, I feel I was not insistent and forceful enough in communicating my symptoms and how debilitating they were to me.

One obstacle I had was the inability to clearly articulate my symptoms. Something just felt "wrong," and I would repeatedly complain to my friends that I didn't feel well, but I couldn't breakdown anything specific. A couple of vocabulary I wish I had used are "extreme fatigue," "flu-like symptoms," "general malaise," and "brain fog." It is important, especially when going to a physician, to be concise, but detailed, with describing your symptoms. This leaves a record that you've made the complaint and if you are concise and forceful, you are less likely to be dismissed as a hypochondriac.

Another thing I've learned is to use certain key words that can trigger a potential diagnosis or the ordering of a test. My impression is that doctors often rely on textbook descriptions of symptoms. If you describe the symptoms in a way they haven't seen in textbooks, then they might not make the necessary connections. For example, when I described recurrent "allergy" symptoms and being sick all the time to my rheumatologist, he didn't make the connection that those symptoms were related to my Sjogren's. If you think you have a particular condition, but your doctor won't order the diagnostic test, then by all means, try using some of the buzz words, such as "dry eyes," "dry mouth," "fatigue," and "general malaise" (assuming, of course, that you do have some variation of these symptoms).


Be Insistent with Your Doctors

Another mistake I initially made was letting my doctors convince me that my symptoms were allergy-related and not revisiting the issue again. I had trusted that my doctors' opinions were infallible and their diagnoses absolute; they were, after all, the experts. But, let me tell you something an infectious disease specialist once told me while I was in the hospital, "medicine isn't an exact science." I wish I had gone back to my doctors, been more persistent, emphasized that my symptoms were extreme and debilitating (unlike the allergy symptoms of my friends), and sought a second opinion.

There are also some doctors who will dismiss your symptoms because "you're too young to have something serious." Insist on getting an autoimmune test or look for a new doctor. Had I known more about autoimmune disorders, I would have insisted on a more thorough blood test. I switched many primary and specialist physicians before I found ones who would listen to and believe me.

A final thing to note is that just because you test negative for ANA does not mean you do not have an autoimmune disorder. I had initially tested positive for ANA, which led to more comprehensive tests that resulted in my diagnosis. However, for the past several years, my ANA tests have always been negative, but I still test positive for the Sjogren's SSA and SSB antibodies. I hate to think what would have happened had I not tested positive for ANA when I did (I may still be undiagnosed). Do not let a negative ANA result be dispositive of your autoimmune diagnosis; request more comprehensive tests, get second opinions, and keep trying.

How were you first diagnosed? How was the process for you and what do you wish you had known back then? Please share your experiences through comments or by contacting us.



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Hi, thanks for stopping by!

I set up this website to share some of my own experiences dealing with Sjogren’s, from difficulties in obtaining a diagnosis to ongoing struggles to manage my symptoms.  It is my hope that through sharing my experiences, I can help others in various stages of living with Sjogren’s.  More than that, I hope this website will become a resource where anyone struggling with Sjogren’s can share his or her experiences and learn from those of others.

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