Hello all
After speaking to NRAS helpline the other day I decided it would be wise to shop around for the most relevant private consultant and have just changed from the first one I booked. However, I was told that I didn't need to be referred by my GP - is that right? I thought it was a legal requirement?
Most private consultants let you refer yourself - especially if you are self funding.
To add to this, it’s helpful if you email them any letters and test results you have - ahead of your appointment.
From what I know of your journey, it sounds like you need a rheumatologist who specialises in complex cases and enjoys getting to the bottom of medical puzzles!
Hope you can find the right one. But honestly, I would say any second opinion is welcome right now 😂 Keep us posted! x
Hi L - yes you're right. As I have a lot of neck and sacroiliac involvement I thought I would look for someone with experience of that and was convinced I wouldn't find anyone but I did. The consultant I have just cancelled specialises in gout.Because of Raynaud's I have often wondered, as did my GP initially that scleroderma is a possibility but even if that is the case, apart from the Raynaud's and GERD/silent reflux thing I am not impacted by that and so I haven't pursued the offer of further investigations.
Also, I had never really looked in any detail into PsA and Ankylosing Spondylitis. I've had a rough idea but beyond spine involvement had no idea that quite a lot of my symptoms tick AS boxes including the way pain in joints has presented itself. I've also always had problems with my back and it started in childhood and was really bad for a few years when I was a teenager. first it was the coccyx and sitting was difficult (accused of being fidgety) then as a teen I started to get the tight and aching ribcage at night which, and I can't really understand why, I just ignored. I put it down to 'sleeping funny'.
I'm hopeless at writing things down and I think I've mentioned before that pain is sooo bad when it's bad that when it passes, a bit like childbirth, one forgets very quickly. But I seem to remember that fairly recently I had a problem with not being able to sit because of the whole of my sacroliliac area being extremely painful. I think it might have been that that got me my second rheumatology appointment.
I'm very worried about my spine. Not much else, shoulder is bad and elbows but I'm not firghtened by it, if you know what I mean? It's the spine that really scares me.
Ah, glad you found someone. Any involvement of the spine is worrying - totally get that. If you would like any help writing your "story" into a quick A4 summary, drop me a line. I'm a journalist by trade so am used to filtering all sorts of info
Fingers crossed that this new consultant will be a game changer for you x