Advice for preparing for rheumatology appointment?

[Retsuko]

Hi everyone,

I haven't posted in here in a while, but I finally have my rheumatology appointment on Tuesday. I'm currently trying to prepare everything to take to the appointment, and I was wondering if anyone had any tips or advice for what to write down and take to the appointment? Should I create a folder on my phone of pictures of my rashes and other symptoms or should I print the pictures out?

I'm really stressed, I've waited a long time for this appointment and I'm desperate for answers, so I don't want to mess it up

Thank you in advance! <3

[StriatedCaracara]

I often get a piece of A4 paper.

In pencil, I draw a body outline - big jelly baby shape does.

Then I annotate this with main symptoms. (Drawing in things like lungs, heart and kidneys helps.)

I put the date at the top, and then can save in a ring binder, seeing changes in symptoms from appointment to appointment.

This helps calm my nerves as have the picture to accompany me. May also email it, and any photos, etc ahead of appointment.

If they do not have access to bloods or letters, then also may be worth emailing pictures of these.

Hope all goes well.

Being assertive and getting then back on track sometimes needed.

I just try to be as clear as possible.

Also best to say if they say something that may need rephrasing or going into more depth, and if there is anything that is worrying you.

[Blue_feather]

Hi there!Definitely put a folder together that show any visible symptoms. When l went for one appointment, l wrote down a list of all symptoms l had been experiencing whether or not l thought they had any rheumatological value. I told the rheumy to take a look and decide for herself what was valid. She was really good and went through every symptom, and wrote to my GP to refer me to other departments that were probably autoimmune, but not immediately related to connective tissue disease.

It largely depends on your rheumy imo. One l saw was terrible, so l took myself off to a specialist for my particular condition at a specialist hospital. Best decision l ever made!

In any event, try not to be nervous.

[Hidden]

Hi Retsuko

That’s great it’s come through - then the nerves hit during the build up to it, especially after a long wait 😬. That feeling of wanting to get it right, say all you want to and for it to go well is a lot of pressure and I definitely feel it too.

Practically-

• definitely make a photo folder, narrow it down to your ‘best’ ones as they’ll not want to be scrolling much. Eg I did one of how rash starts, rash in bad flare, rash after sun exposure, joints when red etc… I’d say this is the most vital bit as it’s irrefutable evidence of what’s going on. I’d mention early in you’ve photos as they are then aware and it’ll guide the rest of the appointment pretty easily, as they’ll ask questions from there. It’s so helpful as my Rheumatologist saw my photos and said ‘you’ve got something called Lupus - oh, but I suppose we should really do bloods to check first!’

• list the most important things you want to say during your appointment on your paper first - time is limited and goes so fast in there. They’ll guide a lot of the appointment as they know what’s most clinically relevant (which isn’t always the same as the thing we feel are important!). I’d note down anything not covered by the photos - like fatigue plus how often you flare, for how long, whether it’s always the same symptom pattern, flare triggers etc.

• make sure clothing can be easily removed for examination or tests they may do whilst you’re in clinic. Take bottle of water to sip too as they’ll need a urine sample.

• remember, you do know everything as you’re living it right now, you can’t get it ‘wrong’, and you’ve got this (even though you may feel like you haven’t right now).

Wishing you lots of luck🍀 ✨

[dg70]

I got 40 mins which was good but I didn't cover half of what was wrong. We covered what was worse at that point in time but then after I thought I wish I'd told her about other things. I popped other info on an email to her secretary in the end. Making an easy list with worse symptoms at the top seems a good idea, you can even leave the list with them. Your first appointment may be your longest one but it goes so quickly. Put any pictures in one folder on your phone so they can flick through them in one go. I hope all goes well and you get the help you need.

[AimeeA]

The doctor will ask for your various symptoms, so write them down if you're worried you'll forget them.

But keep in mind the doctor will most likely determine your diagnosis by the blood work they do... which is usually very extensive. They look for various blood markers that show them that you have lupus, and even if you have various symptoms that you think are lupus, if the bloodwork doesn't confirm it, then they may not diagnose it.

There are other medical conditions that are similar to lupus, so they won't go in with a foregone conclusion that it is lupus, but with multiple screenings to rule out or identify various conditions that might be producing your symptoms.