Honest and Transparent, right?
First, the good news: I'm feeling some slight effects of the hormone therapy... I'm slightly less cold (still sweater-wearing, but starting to roll up my sleeves more often), and today I was actually hungry, which hasn't happened in a long time. I'm also mostly getting by on only 8 hours of sleep each night. Small indications as these things may be, they're good signs. Now the bad news. I enjoy telling stories, and rather than just announce things, I'm going to explain exactly what transpired. This will make it seem a bit hyper-dramatic, for which I apologize... but, dammit, I yam what I yam.
Today I had my appointment with the neurologist to run some test on my muscles involving needles and shocks and other forms of anti-fun.
It didn't go as planned.
I got there, the nurse asked me to don The Gown (you know the one), and I sat there, cold and full-bladdered, for quite some time, worrying about the nature of the test. Eventually, Herr Doktor comes in and immediately looks red-faced, shakes my hand and says "I'm not going to run the test."
He explains that the test involves poking with lots of needles, and that there are two reasons that this is bad. The first, he says, is that he doesn't want to risk any kind of irritation or side-effects of said proddings, because of the second point, which is: the doctor to whom he is going to refer me to "likes to run this test himself", and may want to biopsy the muscles. And it would be bad to have irritations that limit the sites from which the biopsies can be taken.
Caveat: when one hears the word "biopsy", one thinks cancer, and there's no indication of that. So stop thinking it. These biopsies serve a different purpose.
"What I think the endpoint of your condition will be", he explains, "is that you will have to be seen by this specialist at the university medical center." I have seriously elevated "CK" levels in my bloodwork (I forget the exact numbers, but they were double the normal high), and I am slightly anemic, which he says indicate--this is a mouthful--"statin-induced myopathy". Statins are a drug used to treat high cholesterol... When I first experienced muscle pains, it was on statins, and it's because of the pains that I stopped (and the pain stopped). The weird thing is, the muscle pain came back a good four months after I had stopped the second statin I tried (we tried two flavors of them), and thus I thought the muscle pains were coincidental with, not causal of, the statins. And the doctor says, this indicates a serious problem. (Though he won't say more than that. As I said in an earlier post... he's clearly not a speculative person.)
Sigh.
Then he gets a shade redder and explains that "these people are very hard to get an appointment with". It should be a week, I find out from his secretary, before I even get a callback to make an appointment, nevermind actually have one.
He concluded by giving me another neurological once-over, and again confirming that, nope, nothing grossly neurological was going on here: it's purely muscular.
So, with that, I'm back in the dark, worried about what it is my body's up to... and playing an obnoxious waiting game. While I understand preference needs to be given to the people who are in more serious conditions, it's unfortunate that the people who catch these things early essentially have to risk those conditions in the waiting. Our society is so far off-track for preventive care, it's frightening.
So... I'm frustrated. And stressed. But, truth be told, my muscles (and joints) really have only gotten worse, while other signs of improvement are cropping up... so there are possible indications that there's a secondary problem, here, so I'm taking him seriously.
Unfortunately, the nature of his breaking this news to me was such that it caught me completely off-guard, and I didn't have a chance to ask two of the things I had planned on asking: what I could be doing to manage the condition, and whether or not the joint pain was myxedema (and, if so, what to do about it).
As usual, I will keep you posted.
