I have never had an elevated SED rate or any other marker for inflammation! But yet, at times, I have red, hot joints and other signs of inflammation. weird!
Mary Ann

Mary Ann,
Does a SED rate tell the doctor I have an infection or does it define one has RA? If I don't test positive is that telling the doctor I don't hurt when I really do? How does someone tell the doctor their joints are killing them, their joints are hot and swollen too? I hate having to prove myself when I have had this for 20 years. I am so bummed.

A SED rate is considered a nonspecific marker for inflammation. Many years ago when I first started having symptoms, the doctor told me I was probably getting over a virus (that has lasted nearly 40 years). Another non specific marker is CRP. I often have one or the other, but they really are looking for antibodies. It really depends on the Doctor. I went to a major hospital that specializes in rheumatology, but their Medicaid clinic. The fellows would have to ask the big shot doctors about me every time I came in. I had ANAs in the past, but in the last few years it has been really rare for me to have ANAs or even any of the more common antibodies. One of the big shot doctors came in and told me to forget lupus, but they realize I get better with prednisone so he thought maybe I had PMR or Addison's disease. (It would be pretty unusual for a 20 something to get PMR. But the upshot is that the most common diagnosis was lupus like undifferentiated CTD. There is an occasional rheumatologist or more likely a PCP who will only look at your current blood test, but the better doctors look at your whole history, including what drugs have helped you. The even better doctors. If they don't find the most common antibodies look for the less common antibodies.

I hope you are seeing a good rheumatologist, but if you have swollen joints it is hard to believe they would write you off.

Sorry, a little late. The first tests showed an elevated SED rate and that's what the doctor said.

Annny:
Thank you! It seems you have gone down the same road as I have. Your post was very helpful.

I think the sed rate is confusing too! I had red, hot, swollen hands and feet the day of the test and sed rate was normal. I've already been diagnosed with MCTD and RA. I was having more pain than usual so, she ran a test to see if the sed rate had increased. Nope!

I'm with ya! I talked to the PA and she said a normal sed rate doesn't mean I don't have it. She was very calming.

That is good to know Gail, makes you feel a little less crazy!

I have always had a normal SED rate and +RNP and +ANA and an abnormal MRI for leg muscles. Then biopsy of calf muscle which are both constantly fasticulating (twitching) came back ok? The Dr.'s are confused but they have put me on Plaquenil for MCTD diagnosis.

Also when I go through a flare, my tongue gets out of control (geographic tongue) and have bad elevated tinnitus. Does anyone else experience this?