Private rheumatologist appointment, what to ask?

[Justonedayatatime11]

I posted this in autoimmune health but it's pretty quiet over there so hoping I may get some ideas here.

I was under a NHS rheumatologist for around a year, with possible MCTD. Given a trial of hydroxychloraquine which had to be stopped pretty quickly due to side effects. Rheumatology have pretty much written me off since then.

I've paid for a private appointment on Thursday and I really want to get the most out of it, so what should I be asking?

I had a positive ANA test last year, abnormal kidney function blood test results a couple of weeks ago.

I've been tested for lupus and Behçet's disease, which were both negative.
I have chronic mouth ulcers, pretty much all of the time, not just one or two, but normally 8+ and I'm lucky if I get a week or so of respite between them flaring up.
I hurt all over, particularly upper body, especially hips and ribs. So tired, even after I've slept for 10 hours. Immune system is shot to pieces, I get every bug going and struggle to get over one before I get hit with another. The backs of my hands swell up really easily and are incredibly painful to touch, particularly if it's cold, or if I'm using my hands too much. I also have unexplained postural hypotension, so every time I move everything goes black, my BP drops and my heart rate elevates quite drastically. Plus a tremor that started in my left arm a year ago and has since spread to my right arm and occasionally my head.

I'm already gluten and dairy free, take Naproxen, Amitriptyline, Fludrocortisone etc.

Any ideas/advice/help that anyone could offer would be very gratefully received.

I would take a list saying everything you've put here and also state how it's affecting you day to day - ie are you able to work, sleep, dress wash etc
State what's been tried and what happened and why it was stopped
Write it all down before you go so you don't forget anything

Agree with write everything down. Write down a list of current medications and doses. A list of things that were tried, the doses and duration and why they were stopped (no affect, bad side effects etc)

List of the ways in which current situation affects your day to day living and adjustments you've made due to pain/discomfort/tiredness eg giving up walking, sleeping more, changed diet, hot water bottles.

A realistic list of aims - ie would like to be able to walk to the shop, sleep better etc

Any investigations you've had previously, dates and outcomes. For example; x-rays may be repeated to show progression etc.

Be organised and calm. Take someone with you if you can who can help you remember what is said. And request a copy of the clinic letter be sent to you as well as your go after the appointment, this will act as a good summary.

Be aware that private could get very expensive, blood tests, x-rays, scans, prescriptions etc all cost extra on top of the consultation fee. Make sure you get the cost of things up front so you don't get a nasty shock afterwards!

Good luck