Diagnosis

[Beaubeau-0]

Hi 👋 I've just stumbled across this site and thought I would put myself out there in the hope that some of you kind Lupus people could help.

I have all the usual symptoms of Lupus with a negative ANA test. I've been ill for the past 5/6 years to the point that I had pneumonia so bad they thought I had cancer and removed the upper lobe of my lung. I've known for many years that I'm ill but up until my own recent reseach all the jigsaw pieces came together.

I never even knew Lupus was a thing but the more I've read the more I believe I have this.

So I guess what I'm after is information and ammunition to go to the Dr's and push a diagnosis or do I not have Lupus as my ANA test was negative.

Any help would be very much appreciated.

Thanks in advance.

[Lizard28]

This is the difficult part, getting referred to a rheumatologist as they are the only ones that can diagnose lupus,if your bloods are negative it’s going to be difficult. Mine are also negative but I was getting treated for GCA and my GP referred me to one urgently and that got me in the door. I was originally diagnosed with MCTD and then skin lupus, raynaulds and Sjögrens. Keep a diary of all your illnesses, it can take many years to get a diagnosis, I felt like a fraud for years as my rheumatologist is a stickler for blood tests, if it’s not in the bloods you don’t have it. It’s very frustrating so I understand where you are coming from.

[Cazpurple in reply to Lizard28]

Yes it takes a rheumatologist to diagnose, Positive blood tests, along with other symptoms are the only way to tell.

My fibromyalgia was diagnosed in 2010 although it took a long time to diagnose. So I was already under Rheumatology. In 2018 I had an appointment with them when I was hit with pain in all my joints making me bed bound. I didn't know but every blood test after that I was testing positive for lupus. I went 18 months through Rheumatology and then was referred back in December 2022. It was only when going through my medications and was asked why i was taking fenofexadine that she queried why. I said that if i went out in the sun, i blistered. We then went through my symptoms .... light sensitivity, photo sensitivity, pain in joints, butterfly rash, hair loss to name a few. And I was still have positive blood results.

May of 2023 I was diagnosed with lupus and connective tissue disease and started on Hydroxychloroquine twice a day. Still learning about the disease. Hope this helps

[Beaubeau-0 in reply to Cazpurple]

Thank you for your replys I am waiting for an appointment for a rheumatologist as I almost lost my 🤬 when I went to the drs for the billionth time but I'm sure they think I'm a hypochondriac. Any info I should be looking at please point me in the right direction.

Thanks again