I have mentioned a few times that I suffer from an endocrine condition called Polycystic Ovarian Syndrome (with insulin resistance). After knowing that I have a cousin with it, I wandered through the description and thought it might be the best explanation for my symptoms. I did this in 2006. My friends made fun of me. I was diagnosed in 2010. PCOS isn't horriby rare, which is why I thought it was far more likely than some of the other possibilities which had more serious implications.
The rules for appropriate web investigation of medical information are:
1. Always defer to someone actually trained in the field, no matter how sure you are.
2. If the implications are very serious or malignant, you probably don't have it.
3. If it's rare, you should scratch it off your list.
4. Read ONLY just enough to know what kinds of symptoms you should discuss with your doctor and then share the rest anyways.
5. Refer to Rule 1.
Spending quality time with my endocrinologist has completely bucked this previously effective system of ignoring extreme information and focusing on "who should I see about this and what is s/he going to do to me?"
Most of my PCOS stuff is under control, thanks to fiddling with my Metformin until the side effects are manageable (or rather endurable). My A1C has dropped and is almost normal. (GREAT NEWS!) But, the IGF-1 I mentioned before is still jumping around. It was high a year ago and low over the summer and high again six months ago and low this time. For now, my doctor has ruled Acromegaly out. But, this time, my prolactin was high. I have some symptoms associated with that, too, but they're not as bad as they have been previously. So, we're looking for a different kind of pituitary tumor and I'll be having another MRI this week.
When looking at this information, all of these symptoms and test results and such put me into the territory of RARE. Once you're dealing with RARE, Rule 2 and 3 are rather irrelevant. Rule 4 only half applies, because at some point, you're looking at the kind of testing to be done and what it's looking for and how not to hose it up. That and the symptoms are so varied and so disparate that I couldn't begin to actually discuss the relevant ones so the trick is to comment as things come up and if the doctor asks and hope I haven't missed anything important.
Like I said before, I don't want to be this exciting. I just want to feel better. Keeping appointments makes me spastic.
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