On Thursday, I had an appointment with my
new Rheumatologist. The result? Apparently I now don’t have a diagnosis of
lupus.
This was a bit of a surprise for me. It was
quite confusing, as it almost seemed the doctor was implying that I’d diagnosed
myself with it. I knew very well that I hadn’t, but I did start to doubt
myself. Had I totally misunderstood what my previous doctor and nurse had been
saying? Eventually she explained that yes, I had been told I had lupus, but that
was based on some of my blood tests being positive, but others done later (which
are more specific to SLE) came back negative.
We went round in circles for a while, as I
tried to understand what was going on. Basically, though I don’t have
drug-induced lupus, which is curable, there is still a possiblity that one of my
medications could be causing an ANA-type reaction, which would explain my
symptoms and blood results without the lupus diagnosis. Well, it would explain
them, if most of the symptoms hadn’t started years before first taking this (or
in some cases any) medication. So after discussing this for a while, the doctor
decided that actually I do meet quite a number of criteria for lupus, though
still not enough for it to make a clear-cut diagnosis. She said they haven’t
ruled out lupus, so essentially I don’t NOT have lupus, but we can’t call it
lupus yet either.
I was quite upset when I left the office,
but I wasn’t entirely sure why. Shouldn’t I be happy that I potentially don’t
have a rather horrible disease? Well, happy might be pushing it. The name lupus
doesn’t actually change anything. I have the same symptoms either way, and my treatment
options (or lack of) are the same. So why was I so upset?
I kept going over one particular part of
conversation in my head. For several years, I’ve had reoccurring symptoms where
it seems like I have a urinary tract infection. Every time this happens, my lab
tests come back abnormal but showing no infection. A couple of weeks ago this
happened again, and the GP I saw said it was most likely down to the lupus.
This didn’t really change anything, as it didn’t provide a solution, but it at
least provided an explanation for symptoms that had been a mystery for years. I
asked the rheumatologist about this, and she said “well, inflammation in the
urinary tract could cause those symptoms and produce those lab results, and
that is something you might expect to see in lupus, but we don’t want to call
it lupus because then we might not investigate and miss something else.”
Something else.
For years, being sick with symptoms that
didn’t have an explanation was kind of like having a dark shape in my room at
night. Maybe, when the light was turned on, it would be nothing. Or maybe it
would be a monster. At the end of last year, when I was told I had lupus it was
like the light had been turned on, and there was indeed a monster in the room.
But at least now I could see it, and if I could see it then I could control it
and maybe it wasn’t such a big monster as I’d originally thought.
I realised the reason I was so upset after
this appointment was I felt like the light had been turned out again. It was
back to being just a shape in the room, which was maybe a monster I knew, or
maybe “something else.” “Something else” really is quite frightening.
“Something else” potentially puts more than one monster in my room. “Something
else” makes me feel powerless especially when it doesn’t really feel like
anyone is investigating to see what it might be.
Despite the anxiety that this produces in
me, I don’t really think there is something else. I’m fairly certain that what
I have is lupus, even if a clear-cut diagnosis can’t be made. So for the
moment, the other monster in my room probably is just made up of fear, and
anxiety monsters can be pretty damned scary if you let them.
I’m going to do my best not to let this one
be.
Thanks for reading
Little Miss Autoimmune.
