Just to introduce myself, I've received my systemic lupus erythematosus diagnosis on January 16th. My biggest problem was the recurring BRAOs (branch retinal aterial occlusion) over the last 5 - 5 1/2 years. They kept testing me for all the usual causes and I kept on passing those tests. The doctors would just scratch their heads and look at me as if they were completely stumped. My family doctor diagnosed vasculitis last summer, and that was when the headaches started. I sort of gave up in frustration for a while, then I had another huge BRAO in November. The eye doc referred me to a rheumatologist who then examined me and found that I had inflammatory polyarthropathy with synovitis in the hands, elbows, shoulders, hips, and feet. I told her I could write all that off to old age except for the BRAOs. The fatigue, the memory loss, and the joint pain I just figured I'd have to live with, but I had two blood tests come back positive for ANAs. I had mouth sores in the past which I had forgotten about until she asked me if I ever had them. I also discovered a faint pink rash on my face which I had never noticed before, and two of the mouth ulcers came back.
She has me on a low dose of methotrexate to start and 10 mg prednisone for 3-5 days for flares. The pain level hasn't been easy lately as the neurologist I'm seeing for the vasculitis forbade all pain meds. I'm going back to him to discuss my brain MRI on the 31st Jan. so I'm hoping he'll release something, I can't even take an aspirin!
Sometimes I think we put up with more than we should just because we are women, and we take care of everyone and everything else first. I'm trying to keep a positive outlook but when I read some of the horror stories of the folks who have really suffered with this, it's hard not to worry just a little about what the future holds. So far it doesn't seem that bad, and I know some people who have gone through cancer and chemo, etc., so I'm grateful that what I have isn't worse.
Thanks for listening to my rant and I hope to be able to contribute here as my journey unfolds. I'm trying to inform people gently and on an as-needed basis as I don't know what their reactions will be.