Is this lupus?

[Murphy-child]

Can anyone advise me please? I have pretty much all symptoms of lupus. My mum had scleroderma and early last year, my GP sent me to a rheumatologist as I was displaying symptoms also. The rheumatologist didn’t seem interested (we were in the peak of COVID) and although he recognised that I had symptoms, he said there would be nothing they could do until these symptoms became a lot worse and discharged me.

These last few months I have been so fatigued and really struggling with my hands and feet swelling. I have red cheeks and nose, suffered with kidneys for a long time and have high blood pressure. I also develop a rash on legs and arms in the sun.

He sent me for an ANA blood test and this came back negative. Is this not lupus then? Is it not scleroderma?

Now, I don’t know what’s wrong with me. I’m tired of feeling so worn out and now I feel so upset all the time.

What should I do?

I’d appreciate any advise please.

[KayHimm]

I certainly can understand why your you and your GP would be concerned. Any symptoms when a parent has had autoimmune disease are worrisome.

You may have to be monitored for a while. That is actually not uncommon. It sounds like the rheumatologist noted symptoms but it is too early and mild to diagnose. He means he would not treat at this point anyway.

You could have features of different autoimmune diseases. So don’t mess with the sun! Be careful.

They must know your kidney disease is not related to autoimmune disease. They would definitely diagnose and treat that. What are they doing now for your kidney problems? Do you have diabetes?

Hang in there. Stay in touch with your GP.

K