Being Tested

[Surfergirl1962]

I am currently being tested. It will explain a lot if my results come negative. I was tested 28 years ago and my ANA was negative. However symptoms persist and I do get a butterfly rash occasionally.

[Cas70]

My blood tests came back negative but a scalp (hair loss) biopsy showed Discoid lupus - ask for biopsy with Dermatologist - painless too!

[starbook13]

I was diagnosed with lupus two years ago. My mom was tested about 25 years ago and came back negative. Problem is that she has the same symptoms I have and now has a heart condition. I'm trying to get her to retest, but she is dragging her feet 😢

[Dalollies]

I hope you are on your way to getting answers!!

[Paul_Howard Partner LUPUS UK]

Hi Surfergirl1962 ,

Good luck with the tests. I hope that they can find the cause of your symptoms and start a treatment plan to help relieve them. Is it your GP doing the tests or have you been referred to a rheumatologist?

If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

[alicemoon]

In the US a positive ANA for Lupus depends on the titer number as well. A certain percentage of healthy people have a positive ANA and it doesn't mean anything so they only consider it pathological when it reaches a certain level (I could be wrong but I think it was 1:6 last I checked). Of course the problem there is our blood values change frequently and oftentimes according to the lab used. You may show a strong positive one day and none at all the next, grrr. But they decide according to a cluster of symptoms and hopefully you'll have enough information to get the help you need. The only test considered (99.9%) definitive for a diagnosis of Lupus is something called the Anti Smith Antibody test. But I was positive for it once and still don't trust it! I have classic symptoms--lots--but they call Lupus the great mimicker (Imitator? I forget which from all of this brain fog😳) and I am forever thinking I really have something else. My fear is MS but this is enough misery no matter what it's called. Either way you will have more information--you do already from the biopsy. Oh...if you get a Malar rash take pictures if you can to show the doctor.

My poor hair (!) I never thought to have a scalp biopsy. My rheumatologist said my hair loss was due to poorly controlled Lupus last week but maybe it's treated differently. I'll have to look into that; it's scary what you have to figure out for yourself sometimes. A couple of years ago I complained of feeling flaming hot all of the time (not hormonal). He said if it registered on a thermometer then it would be significant. Later I saw my cardiologist who said I felt warm to her. She put the thermometer in four times before it registered but sure enough I had a low grade fever. She charted this three months in a row and sent the results to my rheumatologist. When I asked about it he said now they don't consider anything above 100% clinically significant!!! I was so frustrated and defeated I stopped going for almost a year. When I finally went last week the first thing that "got his attention" was the fever (now slightly higher) and that my skin felt "extremely warm" upon palpation!! Forget about the disease, this kind of thing adds to the already paralyzing exhaustion. I've never been so apathetic about taking care of myself or getting to doctors...by the time they hear me I don't care anymore. If I ever have energy I'll look for another doc even tho this guy is considered reputable (?) Thanks for letting me vent--it wasn't my intention but I guess I needed to😔.

Wishing you the very best of luck🙏🏼💐💛!