First Rheumatology appointment after positive autoimmune blood test - what should I expect?

[Rendine]

Hello! My GP ran a number of blood tests on me a few months ago because I had difficulty recovering from Covid. One of the tests was for autoimmune disease and it came back high for anti-nuclear IgG and positive for anti-Ro52. GP has referred me to Rheumatology and my first appointment has just been scheduled. I am very anxious about it all, could someone talk me through what to expect? Sorry about the silly question, but will I be expected to undress for any examination?
Thank you very much!

[CoffeeBeansGalore]

Hi

Please don't be anxious. I didn't have to undress. Various parts of my body were examined. Head, legs (my legs are affected by my auto immune problems), eyes, mouth, hands, skin on arms & legs. I've had numerous blood tests, one immediately before seeing the rheumatologist & I had scans arranged. You will be asked a lot of health questions, family history etc.

They are there to help you. Hope it goes well Op.

[Rendine]

Thank you so much, CoffeeBeansGalore. It came as a shock when GP said I had tested positive, I went on to google things but that made me even more anxious, so had to stop. What sort of scans did they do? X-ray?

[CherryRipe1]

All that @CoffeeBeansGalore said is correct. Yes you will be given X-rays probably on your hands as that's normally where RA starts. More extensive blood tests will probably be done. Positive anti SS-Ro could be Sjogrens syndrome which can be primary or secondary to rheumatoid arthritis. I had RA pos & SS Ro and SS La pos. Have you had dry mouth/eyes, tiredness? All the best OP.

[CoffeeBeansGalore]

I'm fairly new to this too, so it's all an experience. I've had several MRIs, a CT scan & lumbar punctures. Depending on what they think you have will depend on the tests, but you can guarantee further blood tests.
Everyone I've come across has been really nice, tried to be as gentle as possible, and done their best to answer questions.
Don't be afraid to ask questions. The more information you have, the better. If they don't know they will say so, & usually well it's why we are doing this test, waiting for this result etc.

[pizzaand]

I had these, I'd expect at the least more bloods, and scans- ct/ultrasound, X-ray to be booked as an outpatient. There can be lots of reasons for them or even no reason for them to be raised I haven't had to undress but have had full history etc taken plus lots of bloods and scans before being diagnosed.

[Rendine]

Thank you both! Such a complex area autommine seems to be!

@CherryRipe1 I am not even sure what my symptoms are, things have improved on the long-covid front and some things like pain in feet or knees I tend to attribute to being overweight as it isn't severe pain and I don't have swelling. Interesting you mention dry eyes, I do have that but not mouth. Tiredness again I attributed to covid, but maybe there is more to it.

@CoffeeBeansGalore How did you find receiving the initial diagnosis? I am so scared, just would like them to say that it is all a mistake and I have no autommine disease, but I know this is not what is going to happen. :(

[Rendine]

Thank you so much @pizzaand ! I find the waiting time gruelling, was there a lot of that for the follow up blood and scans or did they get to the bottom of it fairly quickly?

[CoffeeBeansGalore]

@Rendine To be honest I was glad I was being tested as my health was deteriorating so quickly it was frightening. I was getting weaker & weaker after a nasty flu virus last October (not covid) and they didn't know why.
I am still undergoing tests and I am under both neurology & rheumatology. I am now on steroids which have made a huge difference. Life is improving!
Of course I wish it had never happened. But you have to stay positive & be strong. Be bloody minded!
You will have down days, but don't allow yourself to wallow. Give yourself a kick up the backside & get on with it. You are the only one who can make a difference and get better so be positive you can do it.
🌺

[Rendine]

Thank you so much for your positicyty @CoffeeBeansGalore ! I do try to tell myself that the sooner I have a diagnosis, the better the outcome may be. But I am still in denial about it all.

[CherryRipe1]

True, it could be nothing, just tests showing positives & your symptoms due to long covid. Autoimmune issues can be insidious and creep up slowly and mimic each other so can be hard to diagnose definitely at first. It's good that you're in the system and being seen by rheumatology. I have a few freinds with RA and they were quickly diagnosed as I was with Sjogrens. All the best.

[Ponderingwindow]

Expect that the waiting room may be a bit of a shock. The other patients may have a variety of visible diseases and if you are scared about what is coming for you, this may ramp up that fear. It should not. Each person has their own condition and their own progression. We also all have time to get used to what life throws at us.


a rheumatology visit will involve lots of talking and some physical exams. Clothing will depend on what conditions they suspect. They may want to examine you in ways that are new. It also may depend on the doctor. I had a few visits because they couldn’t quite figure things out. One of the trainee doctors was obsessed with my fingernails and she was the one who figured out which autoimmune condition I had that way. They confirmed with a blood test. It also meant a switch to endocrinology for me because my condition was managed by that specialist.

[Ponderingwindow]

forgot to mention, it is also likely they will find nothing or something very simple. I got sent to a hematologist who specializes in blood cancers because of a consistently elevated white blood cell count. I had a particular presentation of anemia that could be treated with some OTC iron. You just never know.

[Rendine]

Thank you so much everyone for sharing your experiences, it really helps in mentally preparing myself. I wish all of you all the best!

[IWishTheBishopWell]

I had to undress to my underwear and wear a hospital gown for my Rheumy exam. I was there for a psoriatic arthritis diagnosis so the Rheumy had to look at areas psoriasis is commonly present, like elbows, fingernails and toe nails and also places psoriasis hides (natal cleft, belly button and scalp) so I did have to pull my knickers down a bit.

No other Rheumy has ever done that when things like RA and Lupus was suspected so it won't happen to everyone.

I do have psoriatic arthritis and she hasn't needed me to remove more than socks and tights for an examination since.