i just wondered if there were any of you out there that got a diagnosis without having the bloodwork to prove a diagnosis, i have had positive ana's and negative's as well, think i am saying this right "with no titer". Also i have had high crp (inflammation). everything else has been normal. as far as urine test go i have had trace amounts of blood, bacteria, wbc count high on urine analysis, am i crazy or this not enough for a diagnosis other than "borderline lupus" and get some treatment started.
i also have fibromyalgia, but i also have all of the other symptoms you guys mention with lupus and then some that dont go along with fibro. it is something different everyday, today my body feels like its on fire and all this week i havent had the energy to stand up - could sleep all day and still not feel good, that is if i could close my eyes cause they seem to be pried open !!
if any of you got a diagnosis without having the blood test to confirm it please let me know, i go to birmingham, kirkland clinic, in june and i am just praying my rheumy gives me some answers.
i may have already asked this of some of you but i cant remember for sure. thx, kel
I have only the positive ANA and a boatload of physical symptoms. Even with just that, it still took two years before the doctor would even say "lupus". Praying you get some answers in June!
thank you did u have any rashes or problems with ur eyes
Ballerina8876 said:
I have only the positive ANA and a boatload of physical symptoms. Even with just that, it still took two years before the doctor would even say "lupus". Praying you get some answers in June!
as I have replied to many of this type of inquiry...I have NEVER had a positive blood test. It was a kidney biopsy that found it. By that time it had done a significant amount of damage to my kidneys, brain, heart, lungs, etc.
So, yes, it is absolutely possible to have a negative ANA or other titer results.
I had spot-on physical symptoms, but all my labs are like "you are totally fine" lol. Neg ANA, generally normal CRP, generally normal Sed rate. Dr. even ran all the "weird" tests for the false-positive syphillis, anti-ro, clotting factors, etc. Nothing on those showed anything indicative of lupus. Feel like they were running every test known to man. I was getting so frustrated, thinking how can I feel this crappy and no one knows what the heck is going on.
But I had the butterfly rash to beat all butterfly rashes--that's what finally put the nail in the coffin for my diagnosis. That, and then I started spilling A LOT of protein in urine, plus always have hematuria too.
Luckily I live near an elite medical school and see amazing doctors, although like all doctors, are frustrating at times. The downside of the med school is that they want to farm out every new symptom to another specialist, so it's like I see 6 doctors regularly which is so exhausting.
They keep wanting to do biopsies on skin and kidneys, so far I am refusing. I think it is unnecessary. They have me on the lupus meds, and I am responding to them, although I do wish I felt better overall. But, and this may sound bizarre, but I am worried that if for whatever reason it doesn't show what they are looking for they might revoke the treatment I have been getting, even though it has been helpful. They are calling it lupus now, and the lupus meds are working. They have done every other differential diagnosis and got a big ZERO, so its not like I am missing out on some other great treatment if they got the diagnosis of Lupus wrong, because if its not lupus, they just don't know what it is. I guess I am just paranoid that they will take away the only things that have helped me.