I saw Dr. Valerie Ball on a Tuesday afternoon almost two years ago. I brought a calendar showing the progression of symptoms and she took a look at my very painful glands. And then she asked if I had dry eyes.
When I think about that moment, I still get a little emotional. It was a turning point in my life. The dots were getting connected and someone was actually listening. She sent me for blood work immediately to test my ANA response. In one week, I was at four different hospitals and went through a CT scan and a fine-needle biopsy (to rule out lymphoma or other cancers). My ANA and sed rates cam back off the charts. I also went on antibiotics for over a month and started on steroids - the infection couldn't get out of the glands because they were so inflamed. My next stop was a rheumatologist and 14 more vials of blood for testing.
In September, I had my definitive answer - I have Sjogrens Syndrome. Compared to many of the autoimmunes, Sjogrens is fairly mild. It's not generally life-threatening and more annoying than anything. I did have to start chemotherapy though. I take five pills each Saturday night. I can't drink alcohol on the weekends because the chemo can overtax liver. I have to rest much of the day on Sundays or I will start to feel ill by Tuesday. But I'm not puking my guts out or losing my hair (much). It keeps my inflammation at a managable level. I haven't had parotitis since July 2010. But I won't be considered in remission for another couple years.
In a little over one year, I had my thyroid start malfunctioning, three separate viral infections throughout my body became active and in a six-month period I had three separate biopsies and surgical procedures. They all link back to my immune system going all bat-shit crazy on me. Diagnosis was the end of one road and the beginning of another.
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Tuesday, January 24, 2012
How did I get here?
I'm going to try to start at the beginning and give you a condensed version of how I got here, but I'll warn you in advance...I can be a bit long-winded.
They (you know them, right?) say it takes an average of five years to diagnose an autoimmune disorder. Looking back, mine took closer to 15 years (and I still feel lucky that I got a doctor that finally had the light bulb go on). When I was 19, I went on Accutane for severe acne for six months. I don't think the Accutane caused my autoimmune disorder, but I think it may have "released" it. I started having dry eye symptoms the year after going off of the Accutane. I was also diagnosed with depression around the same time.
For the next 10 years I continued to battle the dry eyes, frequent sinus infections, respiratory allergies, severe acid reflux and a generally upset stomach on a regular basis. After my daughter my was born, my symptoms changed a bit. My allergies calmed down some, the acid reflux all but disappeared (at least the pain did, I still have scarring on my esophagus), and most importantly when Annyka was about 7 months old, I got the first of many infections in my parotid glands.
At the time, I didn't know that's what it was. All I knew was that I had a large (golf-ball sized) hard lump on the side of my neck, under my jaw. I went to two different doctors and was prescribed a couple rounds of antibiotics. It was chalked up to a complication of sinus infection(s). I ended up having to do acupunture and TENS therapy to get rid of it. Over the next five years, I would get these infections a couple times a year, usually on the tail end of a sinus infection. Eventually I figured out it was my salivary glands and that I could treat them at home with heat, mucinex and massage. Antibiotics seldom got rid of them, so I stopped going to the doctor when I got them.
In the summer of 2009, I became extremely fatigued. In May, I ran my first half-maraton (after training for about 6 months). I felt great, but by August, I couldn't walk a mile without having to stop to rest and catch my breath several times. Something was wrong. I was diagnosed with hypothyroidism and started on medication in the fall.
That winter was rough. I was sick with a sinus infection that I just couldn't shake for about 6 weeks and I had three separate incidents of parotitis throughout the winter. I finally started feeling less tired and able to breath again in the spring, but I still didn't feel "normal." In April I asked my doctor to retest my thyroid because I felt off. My appetite didn't feel normal and I just didn't feel like myself. He said "you haven't gained any weight, so everything is probably fine."
The first weekend in June I woke up on a Sunday morning (following a stressful night in the ER with my daughter for a concussion) with a raging infection - fever, aching throughout my body and a very inflamed, hard parotid gland. I'd had enough. I wasn't going back to my GP to be belittled again so I found an ENT. And that's when things started to look up.
They (you know them, right?) say it takes an average of five years to diagnose an autoimmune disorder. Looking back, mine took closer to 15 years (and I still feel lucky that I got a doctor that finally had the light bulb go on). When I was 19, I went on Accutane for severe acne for six months. I don't think the Accutane caused my autoimmune disorder, but I think it may have "released" it. I started having dry eye symptoms the year after going off of the Accutane. I was also diagnosed with depression around the same time.
For the next 10 years I continued to battle the dry eyes, frequent sinus infections, respiratory allergies, severe acid reflux and a generally upset stomach on a regular basis. After my daughter my was born, my symptoms changed a bit. My allergies calmed down some, the acid reflux all but disappeared (at least the pain did, I still have scarring on my esophagus), and most importantly when Annyka was about 7 months old, I got the first of many infections in my parotid glands.
At the time, I didn't know that's what it was. All I knew was that I had a large (golf-ball sized) hard lump on the side of my neck, under my jaw. I went to two different doctors and was prescribed a couple rounds of antibiotics. It was chalked up to a complication of sinus infection(s). I ended up having to do acupunture and TENS therapy to get rid of it. Over the next five years, I would get these infections a couple times a year, usually on the tail end of a sinus infection. Eventually I figured out it was my salivary glands and that I could treat them at home with heat, mucinex and massage. Antibiotics seldom got rid of them, so I stopped going to the doctor when I got them.
In the summer of 2009, I became extremely fatigued. In May, I ran my first half-maraton (after training for about 6 months). I felt great, but by August, I couldn't walk a mile without having to stop to rest and catch my breath several times. Something was wrong. I was diagnosed with hypothyroidism and started on medication in the fall.
That winter was rough. I was sick with a sinus infection that I just couldn't shake for about 6 weeks and I had three separate incidents of parotitis throughout the winter. I finally started feeling less tired and able to breath again in the spring, but I still didn't feel "normal." In April I asked my doctor to retest my thyroid because I felt off. My appetite didn't feel normal and I just didn't feel like myself. He said "you haven't gained any weight, so everything is probably fine."
The first weekend in June I woke up on a Sunday morning (following a stressful night in the ER with my daughter for a concussion) with a raging infection - fever, aching throughout my body and a very inflamed, hard parotid gland. I'd had enough. I wasn't going back to my GP to be belittled again so I found an ENT. And that's when things started to look up.
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