Private Rheumatologist appointment, what to ask?

[Justonedayatatime11]

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.

[housemdwaswrong]

Hi. Sorry you are having such a rough time. Only just saw this post. How did it go?

[Chronicallymothering]

ask them to check you for the Beighton scale and check your vitamin D levels.

[Justonedayatatime11]

Mixed connective tissue disease. Something the NHS rheumatologist dismissed. So now back on hydroxychloroquine and awaiting cardiology and neurology appointments next week

[housemdwaswrong]

Hydroxychloroquine has worked brilliantly for me. MCTD is often an initial diagnosis, that changes once you blood starts playing ball and throws up more precise results.

It's a good thing really. Progress. Autoimmune is a bugger to get a diagnosis, so it's a start. At least they can treat.... and get a referral to a different rheumatologist.

Hope the other appts go well. X