Hi all, you were all so helpful when i first posted at the beginning of Feb! Finally the day is so close to discuss my possible lupus diagnosis (weds). I have took advice from your chats ,and written my symptoms down since start of Feb,and I'm ready to hopefully try to find a way forwards! But I guess I'm trying to figure out do I ask to see a specialist or for an ana test or both??
Any advice/help gratefully received
Thank you
Hi Gingernat, so glad you have found this forum helpful! I’m in Australia so it might be different for you if you’re based in the UK, but here I can ask my GP for ANA tests as well as a referral to a specialist. In my experience, most specialists tend to order or repeat bloodwork anyway, and it will definitely be a specialist who diagnoses you. But there’s nothing wrong with asking your GP and getting the ball rolling.
Please keep us posted on what happens on Wed!
Hi there! I thought I'd let you know how things went! My GP is 95% sure it is lupus. On Thursday I had my ana test and 2 others beginning with C . I get those results hopefully next Thursday.But no matter the results my GP will send me to Rheumatology.So been a few days properly taking the news in and properly reading up about it.
So thank you for asking and I hope you are in good health ! 😊
That’s great news Gingernat! I’m so glad you have such a supportive GP who is liaising with your rheumy as well. All the best with your test results this week; could the C tests be Complement C3 and Complement C4? They are common tests for lupus as they can show inflammation. But just be aware, normal C3 and C4 levels do not disprove the presence of lupus either.
It’s a good idea to read up about it and be well informed. Feel free to ask questions on this forum anytime—there’s a wealth of information and lived experience here!
My GP was happy to do them, and I got strong ANA so got a referral.Rheumy then said no autoimmune disease as walked in as ENA, dsDNA anti-phospholipid and complement C3 and C4 negative.
The NHS rheumy did a couple of ones GP missed, did not repeat any blood tests.
They instead ordered CT of chest and abs. GP had already ordered CT so this was the second. Had massive amount of radiation that year and no positive results.
Would have been better looking at my neck where glands swollen, and mouth dry, or joints and using ultrasound or little x-rays.
No instead, got the equivalent of another 70 chest x-rays, which I think increases likelihood of actually dying of cancer by 1% each time. GP flabbergasted. They are more careful not to over-expose patients.
I got a batch of blood tests done privately to try and get an immunological score on 2019 classification criteria but different methods and cut offs used and private hospital had outsourced to another company who could not provide any information. GP said one result looked dodgy. We had quite a long talk. GP said some results change with room temperature.
It is hard to know what to do.
It is worth finding out as much as you can on how diagnosis decisions are made at your local hospital trust, ahead of a visit. Do they include UCTD on their webpage, if you don't get positive bloods from the GP. Things like that.
Thinking of you 🙏🤞
All the best. Some have straight forward journeys 🤗
Hi gingernatI would say yes about asking for an ANA test. When mine was positive the hospital must have then done the dsdna test and that was positive too so I'd say it would definitely help to form a clearer picture of what is going on.
Will Rheum send blood & xray results to me/my GP or do I have to wait until my next appointment with him 
Do you need to have a positive ANA to have Lupus ? I have all the symptoms of lupus plus fibromaligia, M.E, Pernicious Anemia & Vit D Defic
PS To my saga re having a referral to Man Royal Infirmary to Lupus specialist?
No time or energy to argue with people I shouldn't feel bad but I do why? I deleted my sister-in-law on Facebook
Employers have changed my role and I'm worried I won't be able to do it due to my symptoms.
