Wattoo, I have the same problem, my blood test all come back negative and good. But my RA Doc says I have some type of Flammatory RA, Its effecting my ankes and knees and a bit in my Elbow, I'm gettin close to losing my LT and ST income from company insurance. Also been turned down for the extended income from company insurance because of the Doctor report - they say there is nothing wrong with me, But i have problems with swelling ankles, soreness and pain and most nights i have problems sleeping.
Good LUck with your problem. Plus I have been feeling really down in the dumps and no energy, but i get tired of sitting around doing nothing but feeling pain.
20% of RA patients are sero-negative
only 5% of us with juvenile onset are sero-positive
70-80 % of patients with RF factor have RA
so.... some of you with positive RF have RA.. some of you with positive RF do NOT have RA.. some without positive RF have RA and some without a positive RF do not have RA .... and 1-2% of healthy people have a positive RF
Whew....
got that?
Are you taking any meds? Sometimes it just works that way. A few times I have been able to catch a high sedrate. Other times I feel horrible and my inflamation markers are fine.
I have read in the past that it does not always work the way it should. It is a tool in diagnostics that is all.
Sometimes people have obvious swelling and the blood markers sedrate and crp just do not show a high reading. It can even work the other way around on occassion. So sometimes I wonder if i went in too early to get tested or too late or what? Other times I have a high sedrate.
Also medicines can sometimes effect the test as well.
WTB, I have had near normal blood test when I have felt just horrible RA pain. I also show very little in the way of erosions in x-rays of hands and feet, but still have bad RA nodules and pain. Flaky disease!!!
Just a couple of thoughts: Your doctor is a Rheumatologist, right? Would you be willing to get a second opinion? A second opinion might give you some new in site to your disease. Stress in my life correlates mightily to my disease activity and like Babs, the better I feel, the better I handle my stress.
My ESR and CPK are ALWAYS normal. Always have been for 15+ years.
I've often wondered if we seronegative folks always have normal readings.
The ONLY think that's ever abnormal on my bloodwork is the red cells with MTX is responsible for.
The way I see it, if the looks like a duck, quacks like a duck, swims like a duck........bingo!
I started on enbrel with normal blood work, but feeling crappy. It helped a LOT. My doctor has never been particularly concerned with my normal blood work. He says RA patients can go in and out of seropositive status... Sometimes getting that positive bloodwork is a matter of "good timing".
I think it's been posted on here before that people's sed rates don't always match up with their pain and swelling...
I know how you feel though. I just posted a fairly long rant about my seronegative status and general lack of "proof" regarding my RA and FM. If I have to be sick, would some numbers be too much to ask for? I guess in the end it's a matter of trusting your doctor and going with your gut. There is nothing wrong with trying a medication that has the potential to make you feel better. Thanks all for the feedback and well wishes! So glad I came and expressed my concerns. As usual I see that what appears to be "crazy" is normal for us. Here- I do not feel alone. I don't know why things can't be cut and dry for us with RA. Being the personality type that "plays by the rules" this disease is very frustrating to me.
It's encouraging to know people have forged ahead based on how they feel vs. "numbers" and have felt better on the added meds. In the end- who cares what you have as long as the meds give relief right?
I'm one of "those" people too. My sed rate at one time was barely above normal, RF NEGATIVE! I've even had vasculitis and none of my markers went up. I have one rheumy telling me I have RA after I had an MRI of my wrist in which he saw erosions. I've tried Enbrel and Humira but could never tell they helped at all. I've decided that until I have a diagnosis that I can actually believe, I'm not taking TNF stuff. Too expensive and too many side effects.
"In the end- who cares what you have as long as the meds give relief right?"
I dunno. For me, I don't want a doctor that will just throw the PDR at me and see what works. I want a definitve diagnosis. I think of it like this... 15 years ago if you came to the ER with abdominal pain, fever and an increased white blood cell count they took you to the OR to yank your appendix out. Now we CT abdomens and actually look at the appendix before the surgeon is called. I suppose I'm waiting for that definitive test, the one that says YES or NO. Be nice if we could just pee on a stick, huh?
This last time I went to my rheumy appt. I thought for sure tests were going to finally show something because I was feeling absolutely horrible, with all the same symptoms i had when I was first diagnosed. Rheumy said at the previous appt that we'd probably talk about changing my meds at next appt. after the results came in. He looked at them and decided a change wasn't necessary. Ugh! I feel like I am starting from square 1 and so frustrated!. I have since called and had to start pred again until I can see him on the 25th.
I hope you get relief soon, hang in there!
Copyright ArthritisInsight.com