I saw my rheumy where I cried from anger and frustration. My life has changed so in the past few years. Dr. C. is always thorough, but this time he went the extra mile.
He told me he is fairly sure I have SLE...this was a shock, as I though he KNEW I had SLE. HE brought up Lupus back in January of 2002. He says the ANA keeps going up and down, and has never been high. I did not know this....but, it doesn't matter, anyway. Then he said we can't rule out Beche'ts Disease, an auto immune and vascular condition. It could be with the Lupus...it could be instead of the Lupus. He did point out it won't change anything, the medication will be virtually the same.
(I will add he said this with matter of fact compassion.)
In my uneducated opinion I have SLE, and possibly Bechet's. I know I have Raynaud's, Arthritis, Sjogren's, and Meniere's Disease. My whole medical team agrees on that...
One of the things the dr. spent time with is my hx of mouth lesions. Yes, Lupies get those, but so do Bechet's patients. Also, I get genital lesions, that are NOT herpes. Well, so do Bechet's patients. And, according to Dr. Wallace's book, this is not uncommon in Lupies. Fatigue? Yep..both disease, but it is not as common in Bechet's, at least according to a web site.
Course of action: document changes in skin after blood is drawn, and come in the next time I get a lesion. He is going to examine, and or, biopsy the sucker.
Some websites make Bechet's disease sound like nothing, others begin " I am doing well, other than losing all my vision in one eye and having several strokes since..." I truly don't know what evil to hope for..I mean an inflammatory vascular condition? What's worse, I am trying to decide...like it matters anyway.
I feel a little better emotionally after posting all this. I haven't been doing well psychologically of late.. I imagine if I were reading this as someone else's post I might cut the writer a little slack.
Thank you for giving me this venue.