Good discussion, for sure, Sybil! I’m headed to my 6-month rheumy appointment on Tuesday and making a list so I’m prepared this time…usually I go in and say something stupid like, oh, I’m pretty good, the Enbrel is definitely working…my feet give me some trouble, but that’s to be expected I guess. To that, he replies something like, the magic of Enbrel! He asks if there’s anything else–last time we talked about my heart extravaganza and how maybe somewhat that could be related to my PsA…I’m always embarrassed to go into any detail about how terrible the pain in my feet gets almost every day because usually if it’s early in the day and I have good shoes on the pain isn’t at its worst and, IDK about everybody else here–I’m sure y’all can relate–when the pain is waning I have a hard time describing it!
Anyway, I hope your ultrasounds give you some good info and it’s great to hear your feet don’t give you too much trouble despite all the damage! Baby them babies and maybe they’ll continue to do their job without too much yelling at ya!
I won’t if you won’t!!
I’ll let you know after Tuesday–I’ve got 2 full days to psyche ?? myself up and make a list! 
Are you like me in that you have to think of actual phrases to use? I realise I still need my soundbites ready, plus a good idea of how to back them up if I don’t meet with immediate understanding.
Oh dear, Sybil! There are times when I think I’m likely to hit the next medical person who makes the “we all have degenerative changes/OA”. And when I have pain in my feet, and I don’t always have pain in my feet, I wonder WHY that is, if it’s not PsA?
For me getting more than one set of foot x-rays in my records has helped. It means they can look for changes and it seems that changes or the absence of changes is really helpful to the medics. And my peace of mind.
A while back between my first private appointment and NHS transfer to our mutual doc I paid £120 and had foot x-rays done at a local private clinic. Worth every penny. I was disappointed by the brevity of the report but by getting copies on a CD they have been used for comparison with the latest imaging.
I think we want every last detail written out so it makes sense to us but I suspect they only comment on significant findings. I recall reading a veterinary report for one of my cats; it said the findings were “unremarkable” … I asked what that meant … they said it indicated no unusual findings, everything was normal and nothing of any clinical significance to the issue. I guess thats how the radiographers report on our x-rays.
Have recently had an elbow u/s followed by an anaesthetic/steroid injection. All my pain was soft tissue inflammation and enthesitis. This was the first time I actually had a doc (and he’s a seriously qualified doc) say to me “of course you do realise this is likely your PsA as it causes soft tissue inflammation”. I could have kissed him! Of course I did know it but it was nice to have the validation.
Hang in there and look after them feet.
Hi Jules! Yes, my sentiments exactly!
I’ve had feet x-rays done in Wales, Shropshire and Margate. I would have thought at least the latest ones would have been forwarded to Bath but I don’t think they have so far.
I have seen a report on my hand x-rays which mentioned quite a few things, it wasn’t long but it detailed what was happening. Yet I really don’t believe my hands are quite as damaged as my feet. I would be very happy with ‘unremarkable’! But as far as feet are concerned I always hear simply ‘degenerative’ and quite apart from the niggling concern that it may not be just that, I’ve got to a point where I need to know how extensive and how bad it is. Because things go missing, I also seriously need to keep track myself. I recall that when I had bunion surgery 7 years ago I was told I had no OA in my feet, which would be interesting, but I’m not 100% sure and didn’t keep a record.
£120 or thereabouts isn’t bad, thanks for that information. I might well go down that route then our doc will have a comparison with whatever the x-rays show in December. And it would make a nice change from chasing things up! Can you look at the CD on your own computer? I’d rather watch a good film but it’d be nice to understand my tootsies. Every time I take an animal to the vet I end up fiddling with the plastic dog & cat skeletons but they have certain limitations.
Yes it is nice to have some validation. My experience to date is quite mixed in terms of PsA add-ons. One doctor or nurse will say ‘PsA’, another will say it’s bad luck or ageing or whatever. I don’t want to blame everything on PsA but I reckon I’m now fairly clear about what is and isn’t due to the disease.
Yes, x-rays you can copy off the CD on to your own computer … I like that I can do that and go over them myself. That was how I discovered the developing bone spurs in my feet which no-one else thought to note!!!
Not sure radiography’s all that great. I suspect they’re very, very busy!
Just an update. I received the follow up letter from my rheumy today. She reiterates that ultrasounds are difficult to interpret after the event. Oh well, at least I know that I didn’t mishear her and I’ll ask her about it at the next appointment. She acknowledges my concern about damage to my feet and says she will try to obtain some stills from the ultrasound to review with their radiologist and also to get hold of the x-rays I had before transferring to her clinic. And that I’ll have hand and feet x-rays next time too. I can see that she listened to me and she’s moving this forward, I’m very reassured.
Also, I don’t really mind what doctors call me, but it’s nice to be referred to in the letter by my first name. I’m in this for the long haul like we all are so it’s good to ditch the formality of ‘Mrs …’
She’s so lovely isn’t she?
Oh my, you can’t ask for better than that. You are being cared for. Truly cared about and cared for.
I’m so glad that she is your rheum. And you too, Poo. (That’s got a nice ring to it, no?)
S
Indeed! And she writes good letters. Somewhat informal rather than the triumph of form over content that you sometimes get.
It’s looking good isn’t it?
She’s a top drawer specialist for a reason.
Yes she writes ‘human’ letters. She was so patient in answering all my questions as I asked loads of them. I was hugely impressed at the obvious time and care she put into her reply to me. So I defintely think we’re in the right place with the right consultant.
I have had very painful feet for 5 years. I have never had an ultrasound, but many x rays which showed nothing. My rheumy finally ordered an MRI of my right foot because my ankle stayed swollen and hurt all the time. MRI showed a calcaneal fracture and all kinds of bone marrow edema and inflammation in my foot. Then, I proceeded to the orthopod who ordered a CT scan of the fracture. I am having it repaired by minimally invasive subchondroplasty in a few weeks after 9 weeks in a walking boot with no improvement.
I have no idea how I cracked my calcaneus. It could have been cracked for over a year. I said all of this to say, don’t let the docs blow you off or minimalize your pain.
Keep bugging them!
Oh my. I’m getting the distinct impression that a few images that don’t show much should not shut us up if problems continue. Thanks for the input mimiB.
So 9 weeks in a boot and nothing doing? You must be sick of it. Minimally invasive sounds good though, do you know when you’re having the procedure yet?
Yes, July 10. I wore that boot for 9 weeks and would say I’m about 33% better, but no cigar. I’m gonna be a very squeaky wheel from now on.
When I started with my new Rheumy, her bio said she specialized in US imaging, I had just got imaged 2 weeks before, but my old Rheumy really wanted me to find a new doctor, she didn’t feel like she was qualified enough to Dx me, she is the Rx style Rheumy, not wanting to step back and look at the whole picture, just ready to throw another Rx at me and see if it sticks. But I digress, so the new Rheumy didn’t want to even discuss the latest US, saying they have not standardized it yet, so she did not trust the report. The same tech had imaged my for a couple of years, I had all his reports from different doctors, she did say she would review it. Doctors can always request still images regarding the reports, he took photos of the significant imaging.
US is the best way for me at least to monitor my disease level, as I am sero negative on all blood work, the markers for inflammation are always low, I primarily have enthesis with very little swelling. The US has given early detection of knee damage, along with the ulnar nerve in my elbow being 23mm in diameter! I was able to follow up with surgery based on these reports.
I know, mimi, we’re so inclined to accept the word of the doctor, even when in our heart of hearts it just doesn’t make sense.
I had bone marrow oedema in my feet too. It is so awfully painful: I used to feel like my feet were going to explode!
Nice to hear from you again!