1st Rheumatology Appointment?

[Whelp529]

Hey everyone, so Monday I have my first rheumatology appointment.  My doctor did a blood test and found that I'm positive ANA. So she referred me to a Rheum doctor. Im nervous and curious to know what will happen. Had anyone been to a Rheum doctor and what was there first experience. Did you get blood test done? Ive been feeling ill for about 6 months now and they couldn't figure out why. My last blood test showed that I have AnA. So she said maybe Lupus or MCTD. I was actually thankful that I got in rarely quick for this appointment. I've read that it's taken very long for some people. So my main question is how did your first appointment go? And was it long after you were diagnosed? 

[littleeffie]

Hi there

Firstly a positive Ana test doesn't necessarily mean you have Lupus so your rheumatologist will probably want a whole screen of blood tests plus go through symptom history .

It really depends on the rheumatologist you see aswell as some can be great and interested and others very matter of fact or we will see you in six months and see how things are.

The best way to get the most out of appointment is to prep yourself with as much information, Barnclown posted a appointment prep list on here recently just can't find the link right now,as possible.A bullet point list of symptoms ,timescales,tests already done and findings.That way you won't forget any important things easily done while in that situation. 

If rheumy has plenty of results of positive blood tests and obvious physical observations they may diagnose you but sometimes it can takes months or years to get a full diagnosis.The main important thing is if they feel you are having enough symptoms and signs to start medication/treatment .The usual starting one being hydroxychloroquine but they may want more blood tests and results before prescribing.

Take someone with you if you can just to mention things you may forget or to take in and remember what is said.I go on my own but have had years of appointments so sort of know what's what now.

Hope that helps and see it as a positive step forward.

Ps just saw your post on the left sticking out rib and gastric issues and I have exactly the same with left ribs and having been having abdo scans and tests for increased gastric issues in the last month.

Effie

[Whelp529 in reply to littleeffie]

Hi Effie, I'm going to try and search for the check list. I guess I'm just eager to find out what's wrong because I'm scared. I haven't been feeling well for months now and I'm starting to have kidney pain and that scares me more. It's hard to get thru the day because I'm always tired even after a great nights sleep, my joints hurt, sometimes it's hard to breath and I feel like a terrible mom because all I want to do is get up and run around and play with my son and I just want. My Gp didn't do any other test besides the regular blood test and the Ana. When she saw the Ana positive I remember her saying it wasn't high but she was going to refer me to a Rhumy doctor to figure out what's going on. I've heard it takes years but I guess I'm just praying that mine does because going years like this seems unbearable. But if you don't mind me asking.m, do you have lupus? If so could you tell me a little more about your experience with it. Also I'm having gallbladder issues, I had a Hida scan that showed my gallbladder only working 28% of the 35%. So I'm wondering if that's the pain under my ribs even though the gallbladder isn't on the left  

[EOLHPC in reply to littleeffie]

Thanks Effie: and great advice 👍👍👍👍....whelp found me...& has that link now....am tickled pink it's proving helpful!!!!  Here it is in case anyone is curious:

healthunlocked.com/lupusuk/...

😘🍀😘🍀  coco

[Paul_Howard Partner LUPUS UK]

Hi Whelp529,

I hope your rheumatology appointment goes/went well. We featured a couple of people's storied about their first rheumatology appointments on our blog last year. You can read them here;

Bronagh's story - healthunlocked.com/lupusuk/...

Lynne's story - healthunlocked.com/lupusuk/...

If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Whelp529 in reply to Paul_Howard]

Thanks! Went today, blood test were done now just the wait...