Rheumatologist testing for lupus

[Charlotte199456]

hi all!

So I’ve had some joint pain issues for a few years and thought I might have EDS. I saw a physiotherapist who requested a blood sample from my GP to test for some possible inflammation. I was ANA positive but ENA negative. My GP then referred me to a rheumatologist who I saw today

he confirmed I don’t have EDS but asked me LOTS of questions about my health, mental health etc which I was sure was relevant until he mentioned lupus at the end. He’s unsure if my positive ANA result is a false positive but he is requesting another blood sample to test again. He’s also concerned about the decline of my kidney values. I have rashes on my legs that won’t go away, headaches, fatigue, anxiety and the aforementioned joint and muscle pain. It just came out of nowhere and took me by surprise. He did say some symptoms of lupus don’t show up in everyone and it’s a spectrum?

I’m just a bit unsure about the whole thing and anxious to see what the next lot of blood results will show.

[dg70]

You need that all important positive DSDNA blood test for Lupus. Good on your Rheumy for looking at your symptoms too and not dismissing you completely. A good GP is a bonus too, they are the ones that monitor all your symptoms as a whole but they are not experts in everything, they are limited in their knowledge usually when it comes to more complex conditions. There are many autoimmune conditions and its often hard at first to nail down which one or ones you have. Some Rheumatologists are starting to ascribe to the view that you may have a certain autoimmune condition but you just don't have enough symptoms or bloods 'yet' . Keep a diary or symptoms and pics and this will all help a Rheumy to see if you have something that is progressing until those all important irrefutable bloods or symptoms turn up. It's not the best outcome but their hands are tied when you don't turn up enough for a positive diagnosis of something. Most of us have waited 5, 10, 15 years or more to know when our symptoms have not been blindingly obvious. Be ready for a bit of a journey and if you know in yourself something is wrong, if your life is not how it was or should be at your age then keep fighting for a diagnosis.

[Charlotte199456 in reply to dg70]

Thank you! I wonder if that’s what he’ll be looking for in my next lot of bloods then! Yes I’m in an incredible amount of pain and only 30 years old which is why I initially went to the GP. I had no idea the rashes on my legs may have been linked so will monitor those too. My kidney values have been in decline for the last ten years apparently - no one mentioned it until the rheumy yesterday so will be monitoring that also

[FandNnan in reply to Charlotte199456]

Your comment about kidney results declining struck a chord with me. I was diagnosed with SLE over 30 years ago and only in the last 10 years did I find out I have a similar kidney problem. One of many I admit but I was so surprised that it hadn't been mentioned.

I hope you have more information soon and perhaps a diagnosis which could lead to treatment and then start feeling better! 😊

[dg70 in reply to Charlotte199456]

Make sure they don't leave your kidney issues. 10 years before I was diagnosed with Lupus and Sjogrens Disease I lost a kidney, it was rotten and full of stones. I will never know if it could have been saved had I got a diagnosis sooner. Have they not looked at Lupus Nephritis? To help yourself at the moment drink water, can't stress that enough if your kidneys are struggling they need all the help they can get. 1.5 to 2 litres a day, not fizzy drinks, keep alcohol minimal. I wonder if your doctor should be booking you in with a Nephrologist/Urologist. I would have thought if its a continuing decline in function a specialist in kidneys would be the next stop, a Rheumy would do that anyway. Any leg swelling go to your GP asap. Living on one slightly grumbly kidney and Lupus is no fun. You need to keep both of yours safe. At your age your kidney function should be over 90ml. I lost my kidney at 38 but not had regular blood tests before that so the decline was not picked up and even so the other one was compensating so may have hidden the issue in the early stages. At least you are being monitored.

[Stills in reply to Charlotte199456]

My condition started with a rash on thighs , huge raised pink blotches that were neither sore or itchy and appeared sporadically, the rash led to diagnosis of Adult onset Stills Disease after months of severe joint pain and immobility. Note that Stills is rare so unlikely but my point is that rashes often are present in rheumatoid conditions. Stills is sero negative . Hope you get answers soon.

[PURPLECROCUS3]

Lupus can be sero-negative ie blood tests non conclusive.I have just been diangosed with Lupus based on bloo d tests(and Sjogrens)after about 14 years.It can also be diagnosed if you have more than 4 of the symptoms of Lupus.I have the leg rashes,butterfly facial rash that occurred on exposure to sunlight,pain and deformity to almost every bone and joint,extreme fatigue,My latest blood test also was positive for Vasculitis and linked conditions of which a symptom is "sudden unexplained weight loss I have had 7 episodes of this weight loss in the last 7 years of around a stone and about a year apart.

[Bigdave79]

key thing is not to worry, and don’t worry about a full or partial diagnosis. You’ll be fine and the fact they’ve found it at a young age her age is positive. This is a great forum. Lots of support and kindness.