What does this mean please anyone?

"RA may occur as part of a mixed connective tissue disease in which clinical and radiologic appearances are not typical of one particular disease." - I read this just now in relation to RA and x-rays (had my hands done this afternoon) and am a bit baffled.

[swapshop]

medicinenet.com/script/main...

you may already have seen this but it explains what MCTD is - otherwise sorry

[Hidden in reply to swapshop]

I haven't seen it before Swapshop and I'm grateful for this link thanks. I have a friend with MCTD and a distant cousin with Scleroderma so it's useful to know about. I think I might well fit one of these categories and as my ANA was never tested until Friday I can't think that my rheumy or GP can have ruled any of them out very thoroughly either. I don't have any of the classic features of any of these though and I did have the classic features of RA when I was diagnosed so I can see more now how my consultant reached his conclusion of a working diagnosis of RA for the time being.

[alicn]

Hi. Possibly referring to Rupus- a combo of lupus and ra which can exist-not sure how it's actually diagnosed, possibly through specific immunoglobulin screening i think which links to lupus which when coupled with ra symptoms gives a mixed picture. I know lupus doesn't result in erosion of joints but there can be deformity with lupus alone-think some dislocation type appearances though not like the one you describe with your right hand. Basically erosion links to ra so if someone had lupus but had erosions it would become rupus!

Blimey, it's all a bit confusing isn't it! I wonder when you'll get your report of your xray-should be ready by end of week i reckon, might not be typed up though but GP could ask for verbal report xx

[denden in reply to alicn]

Hello Alicn, how are you. Been going through the wringer myself with combi of Lupus and Raynaud’s and Sticky blood. Had frightening experience yesterday (first time full blown?) Navigatuon to Raynaud’s site difficult. Not sure if am there - yet.

Blow me down with a feather Alicn, it does sound confusing these medical jargons.

But you have put it well. Makes sense a bit to me now.

Although you are meeting me for the first time, thanks 😃

[Hidden]

Oh it's so confusing Alicn sometimes I could just weep with frustration! It was really nice having the radiographer to quiz I must say and she was very obliging and chatty.

I asked her about the time frame and she said could possibly be by Friday but my GP only works part time so won't be in again until Monday. I've never heard of Rupus!? I get my ANA results back on Friday but console myself that I haven't got a butterfly rash of Lupus at least. The Radiographer was a sweetheart and up for a good chat about the different appearances of RA and OA etc. I asked her if RA in hands required any kind of specialist musculoskeletal knowledge within radiography and she looked baffled and said that in Orkney that's almost all they have to work with and she is completely trained to spot RA erosion in hands - so I just smiled and let it go but wondered privately to myself as Earthwitch has said that these radiographers aren't qualified to identify AS erosion?

We both agreed that lumps that have appeared within the past 18 months are certainly OA but she thought my hands didn't look like RA hands to her - but she of course spelled out that she can't say on just a glance. The images go down to Aberdeen to be processed but I didn't grasp if that means that they are assessed down there too. Ah well at least that's another thing off my tick list now. Do you know if RA would show up in hands within two years from onset and would no erosion mean not RA? It was my swollen hands - especially knuckles and PIP joints that my rheumy diagnosed RA by but he did say keep an open mind things could change. Tilda x

[earthwitch]

There are a number of different combinations of autoimmune rheumatic diseases: rhupus as mentioned is one (features of RA and lupus). MCTD isn't really about having more than one disease (which can happen) but about a combination where there are features of more than one, though not necessarily enough of any one to diagnose that. I'd still wonder with you whether spondyloarthritis of some kind has been properly ruled out (or looked for enough to rule it in).

Scary, that comment from the radiographer. Did you realise that in Orkney many of the radiology reports are actually written first by radiographers (i.e. not doctor trained) and then just signed off by radiologists? I wouldn't mind betting that the radiologists don't take a particularly good look, because if they had the time to do that then they wouldn't need the radiographer to do it first. Its the usual with Orkney though - too many "specialist GPs" and not consultants, physio instead of nurse, not using specialist radiologists, etc etc. It might all work fine for really obvious stuff, but for difficult or systemic, or early signs it means that an awful lot of folk don't actually get access to the same level of specialist care that other areas do. Theres no excuse really for it in radiology though - if they didn't have the folk to report accurately here, modern technology would allow them to email images to anywhere in the world to report - and probably a whole heap more accurately than a non-doctor trained radiographer.

[Hidden in reply to earthwitch]

I know the chief radiographer here - or perhaps she's a radiologist instead I will look it up now. Whichever - I would imagine she's extremely well qualified to look at all sorts of things because she's been around for a long time and always strikes me as a very thoughtful and top of her game type of person. She's highly intelligent and very thorough and I would be confident that if she's assessing my hand x-rays she would miss very little - but that's just my gut instinct talking

I think the comment about "they don't look like RA hands to me" was a bit concerning, especially from one so young - but hey ho - hopefully she's right you never know! I don't think I do have spondyloarthritis but I keep an open mind always. I would be less surprised to learn that my ANA was positive as am wondering about primary Sjogrens as I am hypothyroid and believe these conditions tie in. My GP and rheumy both maintain that RA is in fact several different diseases all put under one banner and to me this seems quite credible but will look up MCTD as my friend has that so it would be good to know more.

[Hidden in reply to Hidden]

PS yes I've looked it up and she is the lead radiographer

[earthwitch in reply to Hidden]

I did some checking on who was reporting my imaging a while back - one of them had a special interest in interventional radiology for uterine cancers, and the other had a special interest in cardiovascular diseases - so neither were musculoskeletal specialist radiologists and yet their word (in single sentence reports saying it was all normal) went. Then when I got a private specialist musculoskeletal radiologist to report them again, I got a full page report on each and loads more detail indicating quite a lot of features consistent with spondyloarthritis. Really makes me wonder how many folk get positive imaging dismissed totally.

[alicn]

Glad the radiographer was so kind and helpful. Bit unsure as to why the images have to go to Aberdeen for processing...most are digital now so i suspect they will be reported by a radiologist at aberdeen, they'll have a contract set up most probably. Some radiographers are reporting radiographers-i wonder if she was, strange though that she mentioned aberdeen if she could do the report locally. Im always wary of saying that i could spot an ra hand! Its not easy to tell from the physical outward appearance unless like in years gone by deformity was extensive. I wouldnt have looked at my own hands/wrists and labelled myself as having ra but the erosions were there nonetheless! The joints you describe as being sore and swollen, the mcps and pips are classic ra areas, oa tends to affect the distal joints a lot more. It is possible that we all have a bit of oa as we get older joy of joys, the xrays will reveal all anyway, it's just waiting now that's not so easy! Xx

[Hidden]

Thanks Ali. I was a bit perturbed by what she said about RA hands too. As an artist I have made quite a study of arthritc hands over the past few years and I know mine were fairly classic when I was diagnosed late 2011. I did point her to my middle MCP which is visibly raised - as is the one below my forefinger. I suspect she was thinking of very drifted hands of much more long term RA sufferers. I do know that the DIP bony lumps are OA because I asked the GP and rheumy about them at my first consultation and they were dismissed as such. But I do think that these arrived very suddenly and rather painfully with the RA and that can't be just a coincidence or just because of my age - I was then 48.

I am also wondering how much each x-ray will reveal because the last ones taken were done by a student from Robert Gordon uni (under this young woman's close supervision) and he took all sorts of angles of my hands. This woman only took them palm down and one shot of each. I can only see the swollen knuckles from the side really although they are usually a bit pink too compared to my left hand. I would have thought the joints needed to be seen from different angles with x-rays too but I guess not.

Oh well I'm going to try and sort out my party music now and have a second glass of white wine to celebrate no metoject nausea tonight! TTx

[alicn]

Just re-read the end of your last comment and yes, ra would show 2 yrs from onset if the disease has been active and uncontrolled thus causing joint destruction by the disease process demineralising the bone in the synovium. If you have had controlled ra that has been halted from causing this aggressive destruction you could have ra but without erosions which is the aim of the early onset drug therapies we are all being given. Also there is a possibility that subtle joint erosion may be too minute to be seen on plain film xrays. This is where MR scans come into their own...xx One answer leads to another question doesn't it! I think MR is used now if there is doubt about effectiveness of treatment but im not sure exactly of the referral criteria. X

[Hidden in reply to alicn]

Oops we crossed in cyber space. Thanks for answering the question about time frames and erosion. I started on MTX about 8 months after the onset of RA symptoms but I did have steroids and a DMARD in between so hopefully that halted the disease's progress. I do know it has been some type of inflammatory arthritis because of my high ESR and the swelling of soft tissue as well as joints but I sometimes wonder if it is Palendromic or a different type of inflammatory arthritis - or even reactive arthritis that has now gone away leaving some OA in it's wake. My rheumatologist just calls it RA as a working diagnosis but he's only seen me once since diagnosis 18 months ago and I have no rheumy nurse to ask these things of. xx

[Hidden]

Thanks Ali. I was a bit perturbed by what she said about RA hands too. As an artist I have made quite a study of arthritc hands over the past few years and I know mine were fairly classic when I was diagnosed late 2011. I did point her to my middle MCP which is visibly raised - as is the one below my forefinger. I suspect she was thinking of very drifted hands of much more long term RA sufferers. I do know that the DIP bony lumps are OA because I asked the GP and rheumy about them at my first consultation and they were dismissed as such. But I do think that these arrived very suddenly and rather painfully with the RA and that can't be just a coincidence or just because of my age - I was then 48.

I am also wondering how much each x-ray will reveal because the last ones taken were done by a student from Robert Gordon uni (under this young woman's close supervision) and he took all sorts of angles of my hands. This woman only took them palm down and one shot of each. I can only see the swollen knuckles from the side really although they are usually a bit pink too compared to my left hand. I would have thought the joints needed to be seen from different angles with x-rays too but I guess not.

Oh well I'm going to try and sort out my party music now and have a second glass of white wine to celebrate no metoject nausea tonight! TTx

[alicn]

Lucky you with the wine! I can reassure you about the one view taken of your hands-its standard protocol for assessment of ra-lots of angles aren't needed to see evidence of erosions. We do 2 views usually for injuries or for evaluation of pain on first presentation but it's always 1 view of hands including wrist joint and if feet are done too, 1 view again. Hope you have a good evening, bet you're v excited about ur party

[Hidden]

I'm fairly terrified about my party Ali - that's probably why I'm wittering away and quizzing you rather than working out how to sort out a cd of party music (the sound system in the hotel doesn't have an MP3 dock and phoning the band manager to make sure they are all set for Saturday. We have 8 close friends arriving on Thursday and Friday coming all the way from London for 2 nights! And our 21 year old son is coming too only the boiler in his flat has just exploded.

Thanks for explaining about the hands - I was worrying that she might not be able to see my MCP joints properly I suppose but that's another worry dispelled (to be replaced instantly by a different one of course!). I'm having a glass for you too and all the other MTX-ers here. TTx

[helixhelix]

I had a bit of a connective tissue moment a while back when I noticed that my next rheumy appointment was down for the mixed connective tissue clinic, not the arthritis clinic that I had been having my appointments in. Anyway, I asked about it, and the conclusion I came to is that the medical world has put into multiple categories what we know from our own experience to be a very variable disease where there's no absolute set in stone pattern! So I gave up worrying too much about it, and decided that it was more important to concentrate on what would or wouldn't improve things rather than what it was called this month.

Oh, and my x-rays have always just been palm down...never had different angles. But I did go and see a stained glass artist last week (to ask about a piece of stained glass that we've had waiting to have restored for 20+ years) and he had done these rather brilliant stained glass screens that incorporated pieces of x-rays in them. And had mounted the glass work so that the overall effect was a bit like those folding screens you see put round hospital beds etc in old films. I quite fancy a few of my wobbly joints hanging up in the window... px

[Hidden]

Wow perhaps that should be what your OH commissions for your next big birthday Polly?! TTx