Any advice on what tests to determine lupus?

[Aura13]

Hello to you reading this. I have been on a long journey to find a diagnosis for what I was experiencing, hair thinning, skin thinning, stomach pain and bloating, veins showing and bulging plus painfull, eye sight issues, low blood pressure and generally feeling very sick. After doing the autoimmune markers my ANA came back positive but the rest negative. My rheumatologist said he doesn't think it's lupus because ANCA was negative, and he barely prescribed me corticosteroids which I had to stop because they caused me more harm than good. I am completely lost and don't know what other tests should I ask for. Can someone please advice to what tests they had in order to get a diagnostic? Thank you.

[sarahalice]

Hi. Sorry you are going through this. Some lupies take yrs and sometimes decades to get diagnosed. It's almost a case of waiting till it gets so bad that it's definitely lupus, after they make sure its nothing else. It's very frustrating.

Here is a checklist of symptoms that might help. If you are, or start having these symptoms as well as the ones you already have, I would push for more tests or to have your bloods redone. I know when I was having bloods done monthly the results would differ each time

Best of luck x

avisetest.com/patient/lupus...

[lacmorin in reply to sarahalice]

ANA test

[Aura13 in reply to lacmorin]

Thanks for the reply. I have had the ANA test done and it came positive yet my doctor dismissed lupus even when I have most of the symptoms just because ANCA came negative.. How do I get around that and make him understand?

[Aura13 in reply to sarahalice]

Thanks for the reply, I will look at the list now, I feel so alone and desperate for answers, I don't understand how doctors can ignore our symptoms and dismiss them. It's always the same answer it's anxiety or depression, I got to the point when I've asked one doctor that if a man would sit on the same chair would he say it's depression? If no doctor listens whilst I get sicker and sicker what are my chances? Lupus could be fatal in certain cases if not managed.. I wanted to ask you, have you experienced or heard of vein issues after lupus, and thinning skin?

[MusicalFurbaby]

Hi Aura, lupus is ridiculously hard to get diagnosed, because it’s a diagnosis of exclusion. They have to rule everything else out first. Most lupies can attest to long delays in diagnosis—my own took 8 years.

If you haven’t already, keep a diary of your symptoms and triggers etc., as that may help at your next doctor’s appt. The only other thing I can suggest is getting a second opinion. Is there another rheumy you can consult, someone recommended by word of mouth? It was only when I got a second opinion that I got diagnosed, which a third rheumy later confirmed. I was so impressed with the second-opinion guy that I continued to see him till this day, even when I moved out of the area. I do telehealth with him; once a doctor has seen you face-to-face, they will often be open to telehealth if you live far away. See what you can dig up!

All the best, we truly understand what you’re going through, feel free to post here anytime ☺️

[Aura13 in reply to MusicalFurbaby]

Thank you for the information, I will try and find another rheumatologist, I am hopeless at this point with medical care and staff.. I will start keeping a diary as well. How did you cope with all the symptoms throughout the long years until your official diagnosis? My symptoms are getting worse and it feels as if there's always a new one around the corner. Thank you again, everyone here is really nice and understanding, I feel lucky I found this group ❤️

[MusicalFurbaby in reply to Aura13]

My pre-diagnosis symptoms were not too bad, apart from having pericarditis once, which was managed in-hospital. The worst daily symptom was the fatigue, which I ultimately managed by dropping my work hours to 4 days per week, then 3 (when I could afford it). But I would often collapse at the end of the day, so there were lots of ‘meals’ which were frozen veg stirred into rice etc. If I visited friends on a weeknight, I had to leave early sometimes because I was so tired—otherwise I would fall asleep mid-conversation! I made life a bit easier for myself by getting shopping delivered, little compromises like that can make life less painful and stressful.

[KayHimm]

Aura13 -

It sounds like you are feeling pretty bad with the stomach issues and painful eyes. You mentioned you go to a rheumatologist and he gave you steroids. Did he say what he was treating? To give you steroids he must have thought you have an inflammatory condition. You need clarification.

It may not be just your lab work. He may not see lupus specific symptoms. But he saw something.

You might want a second opinion, though the rheumatologists would have likely run the panels for autoimmune disease.

It is sometimes a long road to diagnose. Hope you get treatment soon.

K

[Aura13 in reply to KayHimm]

Hi, he has done the panels for autoimmune disease and ANA came back positive the rest were ok. However because of my symptoms on top of ANA he decided to "test" with corticosteroids and see what happens. He did insist that a positive ANA is not a reason to worry since even healthy people can have what is called a false positive. I found what he said ridiculous giving the fact that my boay has all the other symptoms of lupus. He also forgot or chosen to inform me of the dangers of corticosteroids and I had to chaise him around to renew the prescription as if corticosteroids are something to take for months and then suddenly stop. So I refuse to see him, after despite good rewiews from others he treated my case as anxiety. And I payed private for this as well, all my visits were private because on NHS they didn't have availability even when the same doctors I payed private work for NHS as well. Go figure...

[KayHimm in reply to Aura13]

How did you feel on the steroids? I agree that would not instill confidence to not get guidance from a rheumatologist when I was on steroids.

I would definitely seek another opinion.