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.
I know how you feel
I walked aound for a full year beleiving I had Lyme disease. The words were , This looks like Lymes. Well at the time I thought. I finnaly have a name for this monster after being sick for so long. I was kind of releived, yet doctors tend to run from lyme patients, so got the run around for a while , found a rheumatologist recomended by a neurologist , who happens to be a very good freind, he said , nope , this isnt lymes and the rash isnt a pre cancer as you were told, this is an auto immune disease, your RA factor is 226, a normal persons is 20! yet your sed rate is normal which puzzled him greatly, he said he had only ever had one other patient like that . He said it looks like I had DLE overlapping RA, even thou the tests for lupus were a no, he said we feel you are on the threashold of lupus. I think a lot of us understand your frustration , doctors are only human , not god like creatures ( they probably make a bit too much money) and prone to make mistakes like other mortals . just like everything else , there are good and bad, the good ones will really try for you. These diseases are very puzzeling even to them. My new doctor feels there may be something in the environment , possibly because he said he has seen a dramatic increase in these diseases . I pick on the doctors a bit kind of a comic releif, told them , this is family practice, you just keep on practicing , and maybe someday you'll get it right. and if you get it wrong, do I get my money back?, guess its better than yelling which I feel like doing sometimes.