This weekend at the PKD conference was the first time I met anybody else who has PKD. I meant to slide in, stay quiet, observe and take notes on anything important, and then quietly leave. Well, darn it if I didn't meet a whole bunch of people, including the leader of my chapter of the Foundation who now knows my name, my address and phone number, and every other piece of pertinent information that he could use to pull me into this whole thing, full force. Am I ready for all of this? 6 months ago, I would have never dreamed I would be where I am.
6 months ago, I was on the phone with my sister, and I mentioned that my toes were often numb. I don't know why it came up--who talks about her toes, anyway? But it did, and she insisted I tell my doctor about it, rattling off all the reasons it could be deadly disease X, Y, or Z. Seemed silly at the time, but the next time I happened to see my doctor about an unrelated, simple medical issue, which took about 2 seconds for him to resolve, I said, "Oh, my sister thinks I should tell you that my toes are often numb. I don't think it's a big deal, but I told her I would tell you, so, there you go."
Apparantly, the doctor agreed with my sister, and ordered a series of tests, one of which was a back MRI to rule out spinal cord tumors, or something of that nature. The radiologist who did my MRI actually let slip that she saw something, something serious. Yeah, lady, you're gonna have to give me more than that, especially after I sat in that freaky MRI machine for 20 minutes! She shrugged, gave me the usual disclaimer that she is not a doctor, but then said she thinks I have PKD. I'd hever even heard of it. And certainly, since I'd never even heard of it, it must not be true. But just in case it was, I did call my husband from the doctor's office and told him to book us a flight to Hawaii. If I was dying of a deadly disease, I might as well do it on the beach!
The day after the MRI, my doctor called me at 7:30 am (never a time you really want to talk to anybody, much less a doctor) to confirm what he called "freaky news". It was real.
So that's my diagnosis story. A lot has happened in those 6 months, and I've learned more than I ever thought I would about a disease I didn't even know existed. Please share your diagnosis stories: what symptoms did you have, what led the doctors to the diagnosis, etc, etc. Let's get sharing, people!