From Medically Boring to a Seizure During Pregnancy: the Story of a Sjögren’s Syndrome and Lupus Diagnosis

Happy children sitting at home, indoorWhen I was pregnant with my first child, I didn’t expect the labor to go perfect. I had heard enough labor horror stories to know better. However, I didn’t expect to have a seizure, either.

I’ve always prided myself in being the perfect specimen of health. I used to brag to nurses when I got my yearly physical that I was “medically boring.” I had never had any health issues—not high blood pressure, no irregular heart beat, not even as much as a weird rash. That is, until I was in my 38th week of pregnancy.

I sailed through those first 38 weeks of pregnancy, so it was no surprise that I didn’t raise any red flags. But one night, I got the mother of all headaches. It simply wouldn’t go away. Being as stubborn as I am, I waited two full days before calling the doctor. Once she heard my symptoms, she had me come in right away.

We underwent the usual routine—pee in a cup, take the blood pressure. The reaction of the nurse when she took my blood pressure was enough to bring the doctor in right away. My reading was at 190/90. I also had protein in my urine. The telltale signs of preeclampsia.

“We’re going to have to induce,” my doctor said. Ugh. I remember the labor videos of women who were induced. It was far from pleasant. I also knew it would be something completely out of my control.

Before we left for the hospital, I asked my husband Jon to wait for me while I went to the restroom. I just needed some alone time to process it all. So I locked myself in the handicapped stall and just stood there breathing.

And breathing.

And breathing.

Suddenly, my breathing became faster, and I couldn’t control it. I looked around. “Where am I?” I thought to myself. I looked around. “Ok. I’m in a bathroom. But where is the toilet paper.”

“Where’s the toilet paper,” I kept repeating out loud. “I know I’m in a bathroom, but where the hell is the toilet paper?”

I literally couldn’t see it. Turns out, right before you have a seizure, your mind plays tricks on you. Sometimes you see things that aren’t there; other times you see things that should be there but aren’t.

Fortunately, there was another woman in the bathroom. “M’am, are you ok?”

“Help me. Help me, please,” I said in a final moment of clarity. And at that moment, my left arm began to rise and I knew I wasn’t controlling it.

That’s when everything went black.

At the time, the doctors chalked it up to eclampsia, the worst-case scenario with preeclampsia. Two years later, however, another doctor diagnosed me with something more long-term: lupus.

I tested positive for lupus, Sjögren’s syndrome and Hashimoto’s thyroiditis. Turns out, these autoimmune disorders, lupus in particular, can cause seizures and preeclampsia in pregnant women. Worse yet, many women who have seizures go into a coma. That fortunately didn’t happen to me. And even more fortunate, my baby came out with no complications.

I knew I had had the Hashimoto’s, but the lupus and Sjögren’s was new. I had no idea what to expect. Sjögren’s causes severe dry mouth, eyes and skin, all of which I thought was just part of life. Fortunately, I haven’t felt any symptoms from the lupus yet. Lupus itself can be severe, causing symptoms such as joint pain and extreme fatigue.

Three years after my seizure, I found out I was pregnant again. Thankfully, my doctor was armed with information on my diseases and I delivered with few complications. However, the fear is always there. Will I have another seizure? And more importantly, will my disease manifest itself in my children?

For now, I choose to live in the present, autoimmune disorders be damned. I consider myself lucky. And with a pretty damn good labor story, to boot.

 

About the Author
Giselle Greenwood is a former journalist. She currently lives in Houston, Texas with her two healthy and active boys, a dog named Rocco and her ever-supporting husband.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

Comments

  1. I’m curious……how were you diagnosed with Lupus, without symptoms?

  2. Giselle Greenwood says:

    Lupus is one of those strange diseases where the symptoms can mimic the symptoms of other diseases. And oftentimes, the symptoms of lupus simply develop and become more severe over time. Not everyone feels an onslaught of symptoms right away, so a diagnosis is usually based on a combination of lab tests and physical symptoms. In my case, I had a positive ANA test and the seizure, along with other symptoms that I came to accept as a part of life, were enough for the doctor to treat me as a lupus patient. Instead of saying I didn’t have any symptoms, I should have said my symptoms aren’t as debilitating as some lupus patients.

    However, I always recommend consulting with a rheumatologist since symptoms vary from person-to-person.

  3. Thank you for your reply. I was just curious because I was originally diagnosed with Lupus based on my positive ANA, SSA, ssDNA, dsDNA, along with fatigue, joint pain/swelling, hair loss, mouth sores and photosensitivity. My current Rheum (also the director of LUPUS L.A.) said that it’s primary Sjögrens because blood tests alone are not enough for Lupus diagnosis, and I do not have all 11 Lupus markers. Since the treatment is basically the same for both diseases, I’m not too stressed about it, but I just wondered how you were diagnosed with few symptoms.
    You are absolutely right about A.I. diseases sharing some of the same symptoms. It can be very frustrating!
    I’m so glad that your babies were born with few complicatons, and I hope the best for you and your family. Take care! :)

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