A sort of kind of diagnosis.
It's been a busy few days in the household. There's been a lot of work, plus a lot of parties and social events, vis a vis w00tstock, a dregs show, a movie, a bachelor party, and an unexpected wedding.
And there's also been two doctors appointments.
At the first one, I saw the rheumatologist. He had ten blood tests taken for very rare things.
Two of them came up positive. One of them I had been tested for before and come up negative.
That one was indicative for Lupus.
Fuck.
However, to be diagnosed with Lupus, you have to have 4 of 11 diagnostic markers for clinical trials, or 6 of 11 for full diagnosis.
I have 1 1/2 markers, and the 1 is the blood test, which I previously threw as negative. The half is photosensitivity, which I consider disqualified due to me having had that particular 'symptom' since I was oh, three. The eye issues are not a diagnostic marker, but not unknown among people with Lupus, though it sounds like a slightly different version of what I have. But I do seem to always be the weird one.
So I am at this moment cautiously diagnosed as "Auto immune disorder (which we knew about) possibly caused by mild pre-Lupus (which is the new scary bit)"
I'm on an antimalarial which has been found to keep inflammations due to lupus down and prevent lupus flares/keep lupus in remission. We're seeing how I tolerate that and if it helps. It's very mild and safe for many things, including (fairly important to me because of upcoming decisions in our married life) safe for pregnancy. I've taken the first dose and so far so good, at least from what you can tell about the sort of medicine that builds up over three months. There is a slight chance that this medication might be contraindicated with retinal issues, so. Yeah.
On the good side, the eye doctor visit today showed that my vision is once again improving, and that almost all the swelling is gone in my retinas. Joy! Joy and Wonder!
Also we should be getting our Mucha print finally! It's scheduled to come in on Monday. Joy!
And there's also been two doctors appointments.
At the first one, I saw the rheumatologist. He had ten blood tests taken for very rare things.
Two of them came up positive. One of them I had been tested for before and come up negative.
That one was indicative for Lupus.
Fuck.
However, to be diagnosed with Lupus, you have to have 4 of 11 diagnostic markers for clinical trials, or 6 of 11 for full diagnosis.
I have 1 1/2 markers, and the 1 is the blood test, which I previously threw as negative. The half is photosensitivity, which I consider disqualified due to me having had that particular 'symptom' since I was oh, three. The eye issues are not a diagnostic marker, but not unknown among people with Lupus, though it sounds like a slightly different version of what I have. But I do seem to always be the weird one.
So I am at this moment cautiously diagnosed as "Auto immune disorder (which we knew about) possibly caused by mild pre-Lupus (which is the new scary bit)"
I'm on an antimalarial which has been found to keep inflammations due to lupus down and prevent lupus flares/keep lupus in remission. We're seeing how I tolerate that and if it helps. It's very mild and safe for many things, including (fairly important to me because of upcoming decisions in our married life) safe for pregnancy. I've taken the first dose and so far so good, at least from what you can tell about the sort of medicine that builds up over three months. There is a slight chance that this medication might be contraindicated with retinal issues, so. Yeah.
On the good side, the eye doctor visit today showed that my vision is once again improving, and that almost all the swelling is gone in my retinas. Joy! Joy and Wonder!
Also we should be getting our Mucha print finally! It's scheduled to come in on Monday. Joy!