I met with my doctor yesterday to discuss bloodwork results. I was being seen at the Mayo Clinic to discover why I have had severe headaches daily for now five months straight. Two of the tests were the ANA test and the rheumatoid factor test. He said the numbers for the tests were very high but not high enough to say that have lupus or any other autoimmune diseases, but high enough to make me high risk for developing autoimmune diseases. He told me to watch out for symptoms. I'm very scared because I don't know when I may develop one of these diseases. I know that I have had pain and arthritic symptoms in my hands and feets and hips. I have muscle spasms in my hands and feet that are so bad that they curl up and take several minutes for them to return to back to normal position. Is this symptom a sign of lupus or rheumatoid arthritis?
What symptoms should I watch out for? My doctor rushed through and just said that it was nothing to worry about now.
The ANA and the RF tests by themselves are not necessarily diagnostic; that is to say that if you are positive for either it's merely one piece of the larger puzzle. I'm confused by the phrase you used though...the dr said the results were very high but not high enough... Did you get the actual numerical results? I'd be interested to see what they were. There is a threshhold below which you can say the test is negative, and you can have a high titre (which sometimes can correlate with disease activity being high), but there wouldn't seem to be a "very high but not high enough" category. I don't know about that statement.
A good thing to do is to get exact results, even if a dr tells you that everything's fine. I keep a binder just for my own reference and I keep a hard copy of all the various tests that have been run over the years. It helps you keep a timeline of what happens when for later reference if needed.
If you're still having symptoms AND you had a positive ANA or RF, you might want to push further and ask what other tests might be run. Usually a positive ANA with symptoms means that the dr. would want to run follow up tests to find out more information.
Be patient but persistent. Don't give up until you've had your questions answered. Hang in there.
Ravyng, I also think it's a good idea to keep lab copies. (I was too dumb to even ASK what they were testing me for, for many years. Never realized an autoimmune was a possibility.)
Re HEADACHES for FIVE MONTHS: Terrible! Were you tested for antiphospholipid syndrome, which I *think* is one possible cause of migraine-like headaches? (You should discuss APS with your drs. FYI, there's a "sticky post" on it, at the top of the thread list.) Were brain scans done to rule out other causes? Have you been given anything for the headaches?
I had episodic migraine-level headaches, but not daily. They were show-stoppers: couldn't move or tolerate light. I took Bellergal as needed.
I didn't get a copy of my results. The dr. went over the results so quickly that I couldn't really see the numbers. I only remember them being in red. He did not state whether it was positive or negative. I did call the dr.'s nurse and asked for a copy of the results to be sent to me. I did some internet research and found out that a rheumatologist specializes in autoimmune diseases. So I was thinking about finding one and asking him or her to review the results and advise me on how to proceed.
If you have a high titre and the test was negative, what does that mean? Does that mean you may develop the autoimmune disease in the future? Thank you for responding. I'm trying to hang in there, but it is frustrating.
I do not know if I was tested for APS or not. I will have to look into that when I get the results by mail. I had a CAT scan done without contrast done in the ER and I was admitted for a week to the hospital where I had an MRI done with and without contrast. The results only showed a Arnold Chiari I malformation, but the doctor said I had no brain swelling. I had an EEG done and it came back fine. I did not have a spinal tap done yet because the doctor felt that it was not necessary. He doesn't know the cause of the headaches or why they are lasting this long. I can't tolerate light or sound or strong smells. I basically stay at home all the time and have lost job because of my headaches. I have dizzy spells and I have blacked out three times. But, the doctor says the tests show nothing. Right now, I am on Topamax and Elavil. Thank you for responding.
Personally, If it were me Id request further testing to follow up. Thats just my opinion & I'll warn you, Im just frustrated at all Drs & Lab works.
Im finding that WE, as patients have to STAY ON TOP of our own bloodwork because it is our jobs. Im not sure whats going on with these Drs but TOO many patients (As you can very well see from these boards) are walking out of offices w/ no answers to some very serious symptoms!
Again, IMO, the #'s seem low but I wouldnt dismiss it, if you are having symptoms.......
Originally Posted by ravyng
I got my bloodwork results. Maybe someone can help me with these.
ANA Normalcy Range (0.0-1.0 units) My Range (1.9 Hf)
RF (Rheumatoid Factor Test) Normalcy Range (0 - 14 IU/mL) My Range (16H )
At the bottom, it has these reference values for ANA test:
1.1 - 2.9 = Weakly Positive
But the lupus test and lyme disease test were negative.
Ravyng, it's hard to find good words to describe this... but there really isn't such a thing as "a lupus test". Lupus is Dx'ed by the 11 criteria described on the sticky post (= permanent info post). Yes. there are various blood tests that ADD to a diagnosis, but no single test creates a diagnosis. Instead, envision a Chinese menu approach, matching on 4 or more from the numbered criteria list.
There is a test called "lupus anticoagulant". I think its name is very misleading, as I believe it's one of several tests that suggest antiphospholipid syndrome (APS), a blood clotting disorder. There's a "stcky post" on APS, too. Hope you post more soon. Best wishes, Vee