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TobyJug
03-16-2009, 07:25 AM
very confused indeed...
I just came off the phone with the results line.... I will need to ring my doctor to confirm but she says that the notes with the Lupus screen blood test indicate that it now seems to be at normal levels...

So how does that work then? I am more sick have got worse symptoms and my blood is less positive?
Gonna ring the reumy and GP now to confirm if it is right and if so how come.... and what is next...

I know that about 5% of patients does not have a positive ANA test result but even so it was positive in 2007..

confused.......


**running off to ring the doctor now**

SassyAuburn
03-16-2009, 07:44 AM
When I went to my last visit at my rheumie, I asked the same question. I wanted to know, since they put me on meds (Plaquenil & regular doses of Tylenol & Motrin) if the goal was to keep my numbers the same, get them to improve, or to just keep my symptoms in check.

He replied, "Yes". Oh yeay.

After being diagnoses in July of '08, my first round of blood tests for followup was in January of '09. I got no call, so I called them. At the time of the blood tests, I felt much better. Less fatigue, less achy, able to fight a cold better than ever before. So I figured my numbers would be better. Nope. But they weren't any worse either. And the PA said that was the ultimate goal. To stay the same.

At the present time, I've been feeling worse. Another sinus infection plus very achy joints. I called the PA and thought I should have my numbers checked. She said it really didn't matter. My numbers weren't really reflective of a "flare", just the baseline of the disease (kidney function, liver function, iron count, etc.) Many of these numbers have no relation to how you "feel" overall.

I'm sure it doesn't make you feel any better, since generally you feel worse, but the fact your numbers are a better is a good thing I'm thinking. You might be going thru a rough stage right now, but I'm thinking that your numbers indicate the overall status of the disease isn't getting worse. Heck, I had TWO ANA's drawn on the same day last year... one lab's results came back negative, the other came back positive with a speckled pattern. Go figure.

Keep us posted on what your MD's say. Don't worry. But do take care of yourself. And don't think "It took me forever to convince them I was sick, now they are going to think I'm fine?" That won't happen. Numbers change. The diagnosis won't. Just because my blood sugars are good most of the time now, doesn't mean I'm no longer a diabetic and don't need insulin anymore! Ya know?

TobyJug
03-16-2009, 08:01 AM
rite I see thanks for that...
I am just waiting for the reumy to call me back now and see what she says...

Thanks for you reply I am glad I am not just going nuts then....

sick n tired
03-16-2009, 08:58 AM
When my flare was in the worst at first the lupus marker was high ...then even though I was feeling like crap...but probably because of the meds I was taking it went down to normal. Very confusing, I know. Sometimes dr's act like you shouldn't be ill now that it looks normal. I read about a doctor in London..Dr Hughes..(he came up with Hughes symdrome) and he says he mostly looks at symptoms and history. The bloodwork can be a help, but he know that it isn't always right. Sometimes stuff from our illness can mask the tests making them seem perfect...sure wish I was around Dr Hughes.

BonusMom
03-16-2009, 09:02 AM
sure wish I was around Dr Hughes.

You and me both! Maybe we should start our own Lupus commune and Dr. Hughes be the director?!

TobyJug
03-16-2009, 10:59 AM
Rite....

London is a little far for me to go but my Reumy rang back and has made me another appointment with the doctor for Thursday so hopefully he will finally refer me to the Lupus specialist Clinic in Manchester.....
So we'll see.... I was just sooooo confused because then I am positive for SLE then I ain't....

a well we'll see....

thanks for the hugs anyway, rite back at ya all and chin up......

rob
03-16-2009, 11:06 AM
Hope you get this resolved, the ANA test is really confusing. Mine has always been positive, but my mother's fluctuates quite a bit. I sometimes get the impression that many rheumo's don't really understand it either.

TobyJug
03-16-2009, 11:23 AM
Hope you get this resolved, the ANA test is really confusing. Mine has always been positive, but my mother's fluctuates quite a bit. I sometimes get the impression that many rheumo's don't really understand it either.

yeh u took the thoughts out of my head I am getting the idea that they are just not sure how to react to some of my problems anymore...
we'll see what the doc says on Thursday ay.....