I went to the doctor today - not my regular doctor, but the specialist she referred me to, who is looking into whether I really have Sjogren's Syndrome.
First I had to fill out a form with many questions on it; whether I'd ever had a stroke or liver disease, whether I smoked, that sort of thing. Then when I was in the office with this doctor, first consultation, she's asking me for the details regarding my answers. And she looks at my joints. She noticed that my right hand is bigger than my left - and in all of my life, I don't think anyone has ever mentioned that before. Often people notice how much smaller my left wrist is, but not the hand itself.
I explained that my left side in general is smaller than my right, from having had scleroderma as a kid. Scleroderma hadn't been on the 'tick-off' list. And she was right onto it, asking questions about when the onset had been and who my doctors back then had been, and what treatment they'd given me, and I was trying to remember, as best I can, because 'onset' occurred when I was four years old. A bit hard to remember, and at the time, I don't think the grown-ups told me everything. I remembered some of my doctors' names. I knew what the treatment was, no problem remembering that: none, because there is no treatment. They rubbed my skin with vitamin E. Maybe that did the trick.
She looked at my scars and said I had 'coup de sabra' scleroderma. She'd read about it in the case studies, but she'd never seen anyone who had it.
"That means sabre-cut," I said, and she agreed. That hit every romantic notion in my body. Swords! Pirates! Swashbuckling! Okay, okay, that's only a personal quirk and it's just a name for a disease, but hey... if I have to have a weird disease, I like having one named after slashing swordplay. It's so colourful it's poetic.
She asked me if I missed a lot of school as a kid because of being sick, and I confessed I did. And she described my symptoms, and asked if she was right, and she was. She asked me also if I'd had rashes, and I had to think a bit, but yes, I remember having horrible hives sometimes - not a memory I really want to dredge up. I never associated it with the scleroderma. I suspect it was before I got diagnosed.
This is the first time any doctor has paid any attention to the scleroderma since my scars stopped spreading, when I was about eight. I think it's because they don't know what to do about it, and so don't know what to say; and because they think it was a misdiagnosis, because I survived. I have the scars to prove I had it, scars aplenty, and no one has ever come up with a better suggestion as to the cause.
So now I have to get blood-work done (what else is new?) and I have another appointment next month.
Coup de sabra. Hot damn.