Thursday, October 20, 2011

Dark Path Through The Woods


So, briefly, it turns out I don't have Mono. There is, in fact, an exhaustive list of things I don't have, which includes hepatitis A-Z, copper something, iron something, autoimmune hepatitis and rabies. Et cetera.

I did once have Epstein-Barr, the virus which causes Mono, but I don't actively have it now. I don't take medications or supplements which would cause liver problems. Ultrasound shows somewhat enlarged liver and spleen. The liver enzymes taken last Wednesday were somewhat better than the ones taken that Sunday, when I was in the ER, but still high.

My doctor ordered more liver blood tests, for which results will be in tomorrow morning. If they are still high, I need to see a liver specialist, and likely, have a biopsy. If they are normal, then we might consider the fact that I have unexplained hepatitis a fluke caused by some unknown factor, perhaps a virus?

In the background looms the specter of Lupus. The following evidence exists for this diagnosis: widespread body and joint pain, mild fever at last doctor's appointment, pleurisy in the ER, elevated muscle enzymes, elevated liver enzymes, enlarged liver and spleen, positive ANA (which is a blood test that shows that your body's immune system may be attacking healthy tissue, but sometimes healthy people have positive ANA).

But, it is really hard to get a diagnosis of Lupus. I believe it takes an average of ten years to make a diagnosis. And it's kind of a crappy disease because it's chronic and incurable, although somewhat treatable and very rarely fatal.

Anyway, although I suspect Lupus, and my doctor suspects Lupus, we know I don't meet the criteria for that diagnosis, and we don't actually know what the Hell is wrong with me. Which CERTAINLY might be something besides Lupus.

Who knows?

I have learned not to get overly squirrely about these pleasant doctor's visits, but I think this much is clear:

It is time to make a Plan B for the exteme likelihood that I will continue to suffer from chronic conditions that flare not too infrequently, requiring major adjustments to all facets of my life. It is time to stop acting like this is just about to be over any minute now.

I am OK.

I just feel like I'm staring at a dark path through the woods again.



4 comments:

  1. Oh Tara, I know that dark path, too. I'm sorry that you're still not feeling good. And I'm sorry that everything is up in the air with no diagnosis. That's scary.
    Take care. Love you.

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  2. Thanks, Jenn. I am feeling better a bit every day, actually, although I am still struggling with pain, exhaustion and dizziness. I just do this stuff cuz I'm such a groupie for specialists.

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  3. I'm sorry to hear you're struggling with all this Tara. Perhaps this is one of the many things you've already ruled out, but thought I'd mention it anyway because your symptoms sound rather like Hashimoto's Encephalopathy http://thyroid.about.com/od/relatedconditions1/a/sreat.htm Thought you might also identify with this other link - http://thyroid.about.com/od/thyroidbasicsthyroid101/a/igiveup.htm Hugs to you...

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Faith in Ambiguity by Tara Adams is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License