Feet feet feet and feet

General
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Well now, where to start!

I’ve been doing the rounds of rheumys lately. My old rheumy - total star - wasn’t big on imaging. That was okay with me because while I was on his books the one big aim was to ensure that I could function and my joints were protected. And indeed he started me on Humira which continues to keep me semi-sane and pretty damn well. All he had to say about my feet was ‘they’re very damaged aren’t they?’. And I agreed. But really I had no idea, I just know they often hurt and are not pretty.

Then we moved to a new area. Much fear and trembling on the rheumy front. New consultant seemed good but the way it goes is patients usually see the nurse, not her. And the nurse showed few signs of knowing what PsA is. At the previous appointment with the consultant 3 months earlier I’d had hand and foot x-rays but the nurse said no reports had been made and the information probably wouldn’t come through because, well, it just wouldn’t. She did suggest an ultrasound of my hands and again I just agreed 'cos I needed to get out of there.

Next step was signing on with a new consultant in a centre of excellence. And there I will stay. My unintended survey of rheumatology services is over. While waiting for appointments I had the ultrasound done. It transpired that an ultrasound of feet had also been requested. While doing my feet the radiographer(?) got quite agitated and blurted out ‘every joint in your feet shows degenerative or arthritic changes!’. He asked how far I could walk as if rather surprised that walking was a thing I could do. ‘Miles!’ I merrily replied. There’s a theme here, I’m letting the side down. Random words just come out lately when I see medical folk. I do walk a lot, and well, but it’s ages since I’ve walked more than a mile or two. Just shoot me now.

Don’t worry, I’m nearly there. I made sure the ultrasounds would be available for my new rheumy before my recent appointment with her. But she said they were not readable after the event. And guess what I said? It was ‘oh’. Or something equally intelligent. I did manage to tell her what the ultrasound guy said and she pointed out that she probably has degenerative changes in her feet too. This isn’t my favourite approach. It’s true no doubt, but I have got PsA and my feet have got form. They keep on trucking but they’re deformed, every medical person agrees they’re a mess. They hurt so much sometimes though not all the time.

At my next appointment shortly before Christmas I’m due to have x-rays of the feet. Maybe my Christmas present will be foot images that someone actually gets to look at and interpret.

Can anybody explain why ultrasounds are not readable after they’ve been done? I could have just asked this without the back story. But I feel a lot better for getting it out there, so thank you to anybody who wades through.

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That’s just so frustrating. If images are taken during the ultrasound they certainly should be accessible. Picture it like looking through your phone when it’s on camera. You can see all sorts of images while you’re looking through your phone, but unless you click the camera button, you won’t actually capture and save any images. That said, I don’t understand why, at a minimum, the report from the ultrasound isn’t available. That’s weird.

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Oh dear. The old “I’ve got degenerative changes in my (insert joint name here) too” from the Rhuemy.

I got that with my Rheumy first time - except he was 50 and I was 34, and of course he wanted to suggest I had osteoarthritis.

(Seenie, you know the story. For others on the catch up, I stayed with him for a few reasons I’ll try to summarize here; 1 - a bit like Seenie, exactly what do you say when the medical professional who is supposed to be caring for you comes out with something that dismissive? Unless you’ve anticipated, practiced a response, and role played it, it’s so truly stunning - even for an assertive lass like me - that it leaves you speechless. 2 - in Aus, changing is a risk, and you might get bumped back down the medication hierarchy, 3 - my Rhuemy knows how to work the Aus system, which is kind of like having a goose that lays the golden egg here, 4 - I’m particularly proactive and assertive with my disease, which (now that I’ve practiced it) tends to negate his dismissiveness (reckon instead of proactive and assertive he’d describe me as a pain in his ***), 5 - the guy has a serious diagnostic intuition, and as I keep getting little ‘extras’, that’s a very valuable skill for my Rheumy to have. )

But… that’s a whole heap of unique circumstances. And if I had my time again, I may not make the same decision. All of that aside, I’d be running a mile from a Rheumy who is so dismissive, that despite the fact you have such severe disease the radiographers (not to mention your previous Rheumy) are exclaiming over it, the new Rheumy wants to compare it to some concept in the ether that maybe their joints wouldn’t look perfect on scans either?

I realise there are very compelling studies out there that show that confirmation of issues on scans tends to compound them, but I’m pretty sure that it is good information, not dismissiveness, that is the antidote to this.

On the note of the ultrasounds - I imagine it’s a slightly different process here, but at the very least, I’m with Stoney, the report has got to be available. I have watched ultrasounds for my daughter live, then seen the films in the specialists office, and certainly the stills do not paint the same picture. But then, the Rheumy is a Rheumy, and the radiographer a radiographer, so I imagine the missing report would be rather useful :roll_eyes:

I can imagine how frustrating this is, and for me, these sorts of things often feel like a real setback. I try to remind myself it’s not me whose setback, and just get on with the business of enjoying life and disease minimization all at the same time (though I will admit I’ve still got my L plates on wrt both!!)

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I’ve had this all the way along, so yes it’s a little frustrating but I’m used to it. I think what has happened is that I’m aware how lucky I am to be so well these days and to (allegedly) not have erosions that it seems ungrateful to get pushy on this issue. Yet I should know better.

A little more context: the rheumy I’m seeing is a real expert, I know I’m lucky to have got on her books. So when she and I eventually have the conversation I need to have (it’s up to me to make that happen I know), if she is adamant that I just happen to have primary osteoarthritis alongside PsA, I would probably, finally, accept that. But I do need her expertise, I do need her to see the images, I do want her to explain her thinking to me. It would be very difficult for me to accept that PsA and OA hit me hard at the same time without there being a connection but I’m open to persuasion. Alternatively, if PsA is causing all this then I think that does need to be recognised, especially as I’m at an age when I do, undoubtedly, have some OA that is just that and am therefore all too easily dismissed.

So while I’m not actually angry, your input and your exasperation is incredibly helpful, it gees me up a little, plus you know your stuff! The inability to read the scans or the lack of a report or perhaps its brevity or whatever remains a bit of a mystery! I used to be so proactive, I need reprogramming!

Oh, and just realised what this means: [quote=“Jen75, post:3, topic:7152”]
I realise there are very compelling studies out there that show that confirmation of issues on scans tends to compound them
[/quote] I can understand that but I’m okay with reality. Doing okay with the PsA reality after all! I’d hope protecting me from fretting wasn’t a factor.

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Thanks Stoney. It’s not just me then. I seem to be jinxed. Perhaps there was a report but it was very brief …? I didn’t understand what my new rheumy was saying and have given myself a darn good kicking for failing to ask more questions.

As for the now ancient history x-rays, I omitted to say that I eventually got hold of my last rheumy’s letter which showed that she had actually seen the x-ray report. There was one short sentence which said that the damage to my feet was non-erosive and degenerative. But that’s all there was. The nurse I saw was unaware of that letter … or indeed anything.

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This reminded me of a few years back. I had to get an MRI done of one of my feet. I had injured it in a fall, and it just wasn’t healing. The MRI tech was talking with me and kept asking me if my foot hurt, and to point to where. It was pretty funny, as there were clearly quite a few spots that had inflammation and changes. Very little of that was actually discussed in the report though, certainly not to match up with what the tech was expressing.

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That’s a waste of time and skill isn’t it? Is the technician the one who writes the report? I’m thinking that’s unlikely given your experience as well as mine.

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@Sybil we shouldn’t have to work so hard to get a scan result. For me too the reports have frequently gone missing and have needed active chasing but i have never had someone tell me they can’t read it. In Aust most ordered ultrasounds have films taken. Reports are not written by the technicians.

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[quote=“MacMac, post:8, topic:7152”]
we shouldn’t have to work so hard to get a scan result.
[/quote] That is very true MacMac.

I notice that the technicians kind of pounce on bits that catch their attention and click a button, just like taking a photo. But you’re saying that they can also be recorded as a film? I’m learning quite a lot here:

  • what you get from an ultrasound is either a series of ‘stills’ or the whole film
  • the stills may not be quite as good as the ‘live’ images
  • the technicians don’t do the reports

I want to understand as much as possible about how these things work, it helps. Then there’s the other thing that has dogged me from day one and that’s ‘degenerative changes / OA’. That one is a thorny issue.

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@Sybil sorry language differences…a film for me is a photo. That’s the click sound you are referring too. Sorry for confusion.
I was interested in how you said you struggle to think about what to ask the dr or otherwise become stoic. I am starting to think there might be a maxim…the longer people are in contact with health professionals especially hospitals the more disempowered they can become while at the same time their knowledge of their condition increases. I am not sure if I am right but I do find I have to coach myself before appointments and also am usually unable, especially when hearing bad or ignorant news to know what I need to ask. It is such a battle to find a voice sometimes. I think it is downright weird that they are saying they can’t read the ultrasound.

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All the ultrasounds I’ve had where taken by actual doctors. Only x-rays are done by technicians who might not be able to interpret everything… especially for something like an ultrasound I would think the person doing the thing would need to write what they saw?.. and not just take stills…

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LOL MacMac. No need to apologise!

I dunno. I’ve had such a run around lately - moving house, changing rheumys, battling to transfer again, arguing hell for leather with the husband right up to the appointment didn’t help (we’re best of mates again now), feeling totally knackered didn’t either … I daresay I’ll find my feet again. Oops, no pun intended!

This discussion is doing me the power of good though. Thank you!!

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That’s food for thought Cynthia. I’m getting a firm idea of the questions I need to ask. The technician found all sorts of stuff … a hidden ganglion, a patch of inflammation in my hand, something else I can’t remember. I appreciate that not everything they see will be relevant.

I’m beginning to think it unlikely that UK technicians write the reports though. Perhaps it depends on the type of ultrasound? I did have a liver scan which was done by a consultant but the feet guy wasn’t a doctor.

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Sybil, you know that when I see “feet” I go off like fireworks. Reading your post has just left me speechless and sad. I really don’t know what the hell to say. I guess I’m just so very glad that you are getting the best of consultant care possible, even if (like me) you got there when some of the horses had already made it out. I’m so sorry.

I have ruminations about U/S happening, and will post about those in a bit.

Big hugs for you, and I will be very careful not to step on your poor toes.

:blue_heart:

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Thank you Seenie, thank you so much. It’s the old OA thing that’s really beginning to bug me. Not for the first time, which is why it bugs me even more!! Plenty here from the US and other countries have had similar issues. But I do wonder if the ‘it’s only degenerative’ syndrome is especially prevalent in the UK. UK RA forums are chock full of people being told just that. They get their inflammatory arthritis dx, if they’re ‘lucky’, but then the OA that is seen, or assumed, or possibly not OA at all means that their joint damage is underestimated, played down. I veer towards ‘PsA gives me OA’ more than anything but I really need to know.

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I think it happens a lot, that’s the label that got stuck to me for years too. OA. (I’ve got OA, your friend’s got OA, you have OA, we all have OA.)

I’d been diagnosed with PsA, and my hip started acting up. X-rays showed massive hip destruction: initially they thought I had AVM, and then they said it was OA. I insisted that it was PsA, which, seeing I’d been diagnosed with PsA, was the simplest and most straightforward explanation for the joint destruction. GP went ballistic, and did the “your PsA is mild, and this is OA, you can have BOTH, YOU KNOW.” Really aggressive and defensive. That was when I bolted to the specialty clinic. They assessed my PsA as severe. A few weeks later, in surgery, it was clear from the condition of the joint that the damage was inflammatory. It was PsA.

So why are they so reluctant to veer from the straight-up OA road, even when there is a possible other cause? I would love to know. It’s probably a horses and zebras thing, but dammit, when they make the wrong guess it’s not them that lives with the disability!

Ultrasound. I’ve had the same experience with ultrasound as Cynthia. It was always the doctor themselves who did it. It’s a very specialized diagnostic tool when used for musculoskeletal purposes. My guess is that U/S of, say, the liver, or a fetus, is static. They click a pic, and send it to the doc. Whenever I’ve had the joint U/S done, the doc is very busy “skating” over and around the joint. I think they need to “see” the muscles, bones and tendons from many different angles to decide if there’s a problem. Just my guess.

On a funny note, when my “special” rheumatologist did an U/S on my knee, she was going round and round, squirting more gel on (and she’s funny because she sticks her tongue out like a little kid who is colouring when she’s really concentrating). So I said “I’m not going to ask whether you can see if it is a boy or a girl.” She gave me an eye roll and responded “Oh, you’re not the first to make that joke.” I said “I know, that’s why I said I wasn’t going to ask.” She actually laughed out loud, only time I’ve seen that!

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I’ve heard your account before but I think it’s one that can’t get enough air time. It’s such a salutary tale.

I’m not even all that sure that OA damage is always the less worse option. I mean, from what you say they knew your hip was shot but stuck to the OA dx right up to the last minute. Though I guess that put paid to the ‘mild’ label and therefore ensured aggressive treatment. Of course I’m already getting aggressive treatment, so pretty much all that can be done is being done.

I was impressed by the technician’s approach to ultrasound, he seemed incredibly thorough and focused and it took the best part of an hour to do hands and feet. Surely that should generate a thorough report too? It’s beyond me. From what I have seen to date, reports on imaging aren’t all that at the best of times, very minimalist!

Lol! Your story reminds me of a pelvic ultrasound I had a while back. There was a student present and she and the technician started pointing at the screen and laughing. I tried to get them to share the joke and all they said was ‘oh everybody’s different’. Never did find out what’s in there that’s so funny.

I do have some theories about the OA thing but that’s all they are & I’ll get some stuff wrong I bet. I reckon that as some degree of OA is so very common, it readily slots into the ‘so what’ category. Then when people do get it badly it can be very disabling, with little that can be done to slow progression. Which puts it into another category, one in which doctors may feel a degree of helplessness. Then there would seem to be a growing suspicion that it may actually be a form of inflammatory disease rather than just generating localised inflammation once it’s there. That has massive cost implications especially with an ageing population. I think that all builds up into a picture in which it is sidelined relative to recognised inflammatory conditions (which are themselves already low-profile enough!).

I think the relevance to us of any of this which may be correct is that there’s a presumption that anything that looks OA-ish, even if it might not be, even if it’s secondary to another condition, really isn’t too important and doesn’t merit closer inspection because no good can come of it.

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Well thanks all for your input. Thanks to discussing this I’ve got there now, I know exactly what I’ll say in the future. I couldn’t spit it out before. My angle is that I understand that in my case there’s no requirement to do frequent imaging and if cost restraints limit the amount of imaging I am somewhat understanding of that. However, when my joints are x-rayed etc. I want the maximum amount of information possible from the images. I want to know everything. The reason’s glaringly obvious: I have a disease that affects joints and potentially destroys them. Doh, doh and doh again!

And I might have some images done of feet privately, maybe. Honestly, you folk here don’t know how much this site helps me sometimes.

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Don’t forget Sybil, our respective doctor’s secretary is happy to receive emails so that you can ask further questions of our ‘doctor’ and indeed get some more answers. It might take a couple of weeks but you will get an answer. So don’t beat yourself up you weren’t responsive enough.

As for the scans I can’t believe no stills were taken but when I had that done initially at the first rheumy in Canterbury, I remember thinking they’re not either recording it or taking stills. It didn’t matter then as the scan was showing nothing but I do remember thinking it was odd. Maybe for some stupid reason that’s how they do them. But maybe ask why as it might put your mind at rest.

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Thanks Poo! Mr Ultrasound was clicking away every few seconds like a demon, I’m very sure he took stills having heard a bit more here about how it works. I might ask the secretary but I’m inclined to wait (for a change!) and go in next time with my brand new head on. New appointment, new me, fresh start.

It’s fun round here isn’t it? Nobody’s told my old hospital that I’ve changed, well I have but apparently that doesn’t count. So they’ve made an occupational therapy appointment for me, for my hands I think but it doesn’t say. Nobody’s told my GP that I’m now at Bath, except me etc. so my blood tests disappear into the ether. Weather is absolutely fabulous though.