that the doctor didn't tell me there is nothing wrong with me and she has no idea what it is.
The bad news is that it is some sort of collagen disorder, to be named (possibly) at a later day, and there is nothing much one can do to fix this type of thing. I kind of knew that was coming though with all of my compulsive research.
Dr. Davis is a very lovely and (seems) knowledgeable genetic doctor who has seen many people in my situation. She was understanding and patient and asked many questions. I had brought with me as many records as I could regarding various surgeries, lab tests, scans and the sort. I also wrote up a list of two pages everything that is wrong with me and what hurts. Amazing how long that list was. The best question was "are you always in pain". Right then I knew I liked her because she "gets it". I told her the honest truth, that I can't remember a day that I haven't been in pain. Sadly when most people hear you say this, they don't believe you and start asking "so what hurts at this moment". I just tell them the list would be shorter regarding what doesn't hurt, and yet, they still have their doubts. I'm not trying to play for sympathy here, I just really liked the fact that this doctor seems to understand what kind of "life" I have been living.
I was with her for about an hour and a half. She spoke to me first and then examined me. Genetic doctors do a lot of measurements she said, and they sure do! She also said that it's ironic that one can look healthy and be such a mess inside. Another thing most people don't get. "Oh, you're not feeling well? But you look just fine, nothing can be wrong with you". You'd be amazed how much of that I get.
So onto the next steps. There is no exact test for condition X as I will call it now, for lack of the "official" title at present. However, if I do have one type of condition, a heart issue could possibly be related, so to play it safe she wants me to have and ECHO done. Ok, fair enough. I am not really that nervous about that since I'm getting cut-up the next, I'm more concerned about the latter.
The doctor also said she would like to get a biopsy of some tissue so they can study my collagen. We're hoping this can be done during surgery since I will be "opened" then. That leads me to the bigger issue.
BLOODY INSURANCE COMPANIES! Why can't you just ring up, ask a question, and get a proper answer? Can it truly be that difficult or do they make it a requirement to be a)obnoxious b)daft c)not helpful when they hire people? I rang up to check that the ECHO would be covered. The response was "what is the code". I don't know, is there more than one code for an ECHO (obviously a daft question from the sound of her reply). "I can't help you without a code". Ok, fair enough, I will try to get that and ring back, but I have a bunch of OTHER codes I needed to check with her about the biopsy. She places me on hold and then finally comes back. "All codes are billable, but subject to medical necessity". I swear, a simple yes or no would be brilliant!
Ok, so what is medical necessity and how do I prove that? "You'll have to ask your doctor, she would know". These people are just so helpful. She also told me that if they are going to take the biopsy during the surgery, I need a new approval for the surgery. I said, I have that already, can't this doctor, the doctor NOT doing the surgery, just send in a separate request? Finally she concedes that yes, this can be done as well. It's like smashing ones' head in a brick wall.
As it stands, I rang and sent an email to Dr. Davis's office with this information and they are looking into it.
The moral of this story is, well, there is none, just a statement - INSURANCE COMPANIES ARE CRAP!!! But then again, you knew that already, didn't you?
