12.17.2008

Finally a diagnosis

In my junior year of high school I started getting these horrible pains in my jaw. The glands would swell up and I couldn't eat or drink. I was always tired so first we thought I had Mono, but I didn't. We went to the doctor and got x-rays, an MRI, and did everything we could to figure out what it was, but nobody could ever give us any answers. Then in college I had a lot of joint and muscle pain so I went to a Rheumatologist. He took some tests and narrowed it down to Rheumatoid Arthritis or Sjogrens Syndrome, but still had no answers for my jaw problems. I was tired of going to the doctor and not getting any answers so I just gave up on it. Once we got to Cali I decided it was time to get an official diagnosis so I could try to make sure things didn't get worse as I got older.

My primary care doctor referred me to a Rheumatologist in Santa Cruz. I made the 45 minute drive up there and she takes one look at me, asks me how old I was, humored me for about 1 minute, ordered some blood tests then sent me on my way. I went back two months later and she says, "Your tests show several abnormalities, but you're so young. Let's just wait and see what happens."

Okay, obviously I'm not crippled or anything, but wouldn't it be smart to figure out what it is now so that I can keep myself from eventually being crippled? She made me so mad. Just because I was young she wouldn't treat me! So I told my p.c. and he referred me to a different doctor (and was so mad he said he would never refer any of his patients to the first Rheum.)

This new doctor actually took me serious and answered my questions. He looked at my blood results and said, "You have many abnormalities. Your main problem is Sjogrens Syndrome and that is most likely what has caused your jaw problems also. Let's treat the Sjogrens first, then see what other underlying issues you have going on."

Now that is what doctor is supposed to do !

So here is what Sjogren's Syndrome is:
Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. Sjögren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans. Nine out of ten patients are women. The average age of onset is late 40s although Sjögren's occurs in all age groups in both women and men.
About 50% of the time Sjögren's syndrome occurs alone, and 50% of the time it occurs in the presence of another connective tissue disease. The four most common diagnoses that co-exist with Sjögren's syndrome are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis. Sometimes researchers refer to the first type as "Primary Sjögren's" and the second as "Secondary Sjögren's." All instances of Sjögren's syndrome are systemic, affecting the entire body.
The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life.

So the medication that I'm taking is also used to treat Malaria. I don't like taking medication, so I'm doing some research to find natural ways to treat it. I might have some problems with this though. If you know me well then you know that I have annoying food/texture issues. All of the natural remedies include ingesting things whose names alone make me gag a little bit. This will be a major challenge. Hopefully some funny stories come out of this new adventure.

5 comments:

Brandis said...

Wow, I'm sorry that you're having to deal with all of that. It's good that you're finally getting answers though and I hope things get better for you!

Erin said...

That stinks. I hope you can get it all taken care of. I'm glad that you were able to find a dr. that takes you seriously and will take care of you!

Amanda said...

That is crazy. I am glad you finally have some answers though. Good luck with everything!

Kathryn said...

Like G.I.Joe said, "Knowing is half the battle," right? Good luck finding workable treatments.

Zan said...

So sorry to hear this is happening to you Jess. I had no idea. I hope that this new 'adventure' as you say will pan out. I love your postitive attitude. That alone will aid in your recovery.

Love YA!

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