Thursday, September 9, 2010

A diagnosis - Part 1

Boring name for a blog, but for the first time in quite a while, I'm feeling the need to write a bit. I have a lot of anxiety and messy stuff bumping around in my brain and the best way for me to straighten it all out is to write it out and hope it starts to make sense (to ME).

So we'll start at the beginning - explaining how I got to where I am today. Part 2 will be the anxious part.

Not too long after Annyka was born, in November of 2005, I started getting some swelling in my neck, below the ear and behind my jaw. I don't remember which side of my face it was on, but it doesn't really matter. It progressively got worse over a few weeks, but I had also been having some severe allergies and inner ear fluid causing vertigo, so I was assuming that it was all related and that the meds my doc had already prescribed would help. The Sunday after Thanksgiving I could barely eat due to the swelling and pain and my body was feeling achy and exhausted with infection so I went to the doctor. Antibiotics were prescribed. They didn't help. More antibiotics were prescribed. Still little change. The infection would clear up, but the swollen gland didn't get better. Eventually with the help of acupuncture, TENS electric pulse therapy and A LOT of warm compresses and massage the area drained and went down.

Over the last five years, when I get a sinus infections I would likely get infection and swelling in one or both of my largest salivary glands - the parotid glands. I would put off going on antibiotics as long as possible since they never seemed to help and I also started avoiding going to the doctor since it seemed pointless.

However, in June of this year, I woke up on a Sunday morning at 4 am with a raging infection. Fever, aches, very painful parotitis and general crappy feelings. Since this was the third or fourth time with parotitis in the past 6 months, I had reached a threshold. I was self-referring myself to an ENT. I fully expected to hear that I would have to have my tonsils or adenoids or something like that removed. I did not expect what she said instead...

She asked if I had dry eyes. Well, yeah I do. I deal with it just like everything else, but yeah, I've had problems with my eyes for about 10 years. Then she asked if I'd heard of Sjogrens Syndrome. I hadn't. She was surprised no other doctors had mentioned it. That is one of the most common causes of the swollen parotid glands. So I had some tests: a few blood tests, a CT scan and fine needle biopsy. The CT scan showed some abnormalities, but the biopsy came back with good results. The blood tests surprised me the most. My ANA number was off the charts - this means I have antibodies in my blood that indicate an autoimmune disorder. So off to another specialist I go.

I researched rheumatologist and found one that I was comfortable with - AND could fit me in in a reasonable time period. I had A LOT more blood tests (14 vials and several thousand dollars worth). And the results came back yesterday - it IS Sjogren's Syndrome and now I move forward with treatment.

The good news is that the thyroid issues, the weird vasculitis in my legs and feet (hard to describe, easier if you can see it, but basically my blood vessels swell and you can see blood under the surface of my skin as petechiae or purpura), the dry eyes, the recurring parotitis and the exhaustion have an explanation...the hard part is making some treatment decisions and reversing some of the damage that has been done over the past year. And that is where the anxiety comes in.

To be continued.

1 comment:

  1. Wow, I guess it's good you know now. Maybe you won't have to buy stock in eye drops :) really good luck!