Does it make a difference to test for ANA while having symptoms vs not?
Posted , 3 users are following.
I've been dealing with a variety of symptoms (severe muscle/nerve pain, headaches, facial and ear pain, swollen lymph nodes, extreme fatigue, arrhythmias, anemia, blood in urine etc., the majority of my life. I've seen a few doctors over the past several years but 100% of the times I got the usual, you need to exercise more, you're probably depressed, you MIGHT want painkillers, etc., so I basically gave up trying to find answers and just put up with the pain like I always have. The only time I got some relief was during both of my pregnancies where the symptoms miraculously went away, just to come back a few weeks after giving birth. I recently decided to try again and talk to my dr. about it. I got the usual answers but at least she was willing to run some tests (ANA and sed) which brings me to my question. I'm currently not having very many symptoms other than some pain here and there, it has been so great to finally catch a break, but I know its just a matter of time before the symptoms return. Should I go now and get the tests done, or wait and go while experiencing symptoms? Would it make a difference?
?Thank you so much!
0 likes, 3 replies
margaret22116 l60720
Posted
ok so sadly no, it doesn't tend to follow. I can be feeling well and have raised esr and crp. I can be unwell and have perfect blood readings. Very frustrating I know. The point is you need a specialist in this area to monitor what is going on. It took me into my 40's to be diagnosed. And I recognise what you are saying about fluctuations in symptoms.
These disorders do fluctuate and you have periods of remission. Also, significantly, often during pregnancy symptoms go. I am not able to explain this but the effects off hormonal changes seem to affect some people with these disorders in a very positive way. This is not uncommon.
So what can you do to move forward? You really need to be quite forceful with your gp and ask for a referral. Do you live in the uk??That is important to know because you can contact Vasculitis UK who have a free helpline. I believe that they produce information guidance for doctors on these disorders and they would be able to guide you re how to go about getting a referral, what you need to say or show to your GP.
The other option - and it's not a great one I admit - is to pay to see someone privately as a one of consultation and then get follow up on NHS. And if you go down that route you want to make sure you see the right sort of specialist so your not wasting your money.
I know what you're going through, took me such a long time and a painful journey to get a diagnosis. It's very frustrating.
jacs54002 l60720
Posted
Hi
i asked them to check if I'd arthritis due to pain , they took blood tests 3 times said no arthritis but you have lupus... It was quick to find out thus way... I have most of the symptoms in your note but being well treated now..
hope ur feeling better soon but I would push for mire tests. 🙂
margaret22116 jacs54002
Posted
hi, glad you got an early diagnosis. I too was diagnosed after onset of joint pain but unfortunately it doesn't always show up. My blood tests were negative. My rheumatologist recognised I had an inflammatory disorder so referred me on. (I have Behcet's not Lupus but similar situation with blood tests).