Finally got my MRI (3 months !) and will be chatting with my doc on Monday. My painful, limp inducing ankle morphed into a top of the foot problem with pain, stiffness, etc. as well. It’s more walkable than it was but the top of my foot likes to swell and get hot, sometimes I limp but I’m careful because I notice that walking funny helps it cease up (stiffen).
Anyway…the MRI came back with all sorts of bone edema issues…
“1. Diffuse marrow edema throughout nearly the entire second and 4th metatarsals,
as well as to a lesser degree within the third and 5th metatarsals, middle
cuneiform and base of first metatarsal. There is surrounding edema in the soft
tissues about the second and 4th metatarsals. The findings may represent
complex regional pain syndrome/reflex sympathetic dystrophy. Stress reaction
without stress fracture is also possible, however the multifocal nature of the
edema would be atypical.
2. There is a small focus of marrow edema in the lateral subcortical aspect of
the lateral malleolus which is nonspecific but could represent a small bone
contusion or be related to complex regional pain syndrome.”
Ok - I know you all are not doctors anymore than I am but I guess what I’m really looking for is experiences - and what helped you. My doc I’m sure will have more info in a couple of days and I’ll update this post. I’ll also make sure my rheumie knows about this. I think point 1 is about my foot, point 2 is about my ankle. So many questions - is this just a PsA thing ? Is my Rinvoq not really working anymore ? Making a list for my doc - I assume the writer of this report does not know about my PsA…
In real terms this investigation into your foot should have been led by your rheumy. It’s sadly hugely likely to be a PsA induced thing as these types of things is what PsA can do.
I’m pretty horrified they are already talking of such things as complex regional pain syndrome etc. That’s a fob off thing really. Why aren’t they aware you have PsA? They ought to be instructed about that by whoever ordered the MRI.
I believe bone odema can lead to bone erosion which is what PsA can do. They call in different things in different countries sadly.
Do let us know what they say. Our meds are supposed help prevent joint damage but there’s never a certainty they will be completely successful in doing that.
So sort of an update - as I suspected, from the wording of the report, the radiologist did not know about my PsA. Unfortunately I am dealing with a fairly new Nurse Practitioner whose main experience is in Emergency. She did not put on the request that I had PsA. She began to talk to me about Complex Regional Pain Syndrome and I told her about bone marrow edema being related to PsA and the issue of this causing bone erosions. She did not know about this. At my request, she is sending the report on to my rheumatologist (he should have been included originally). As well she is consulting with a colleague who is a sports medicine doctor (!?!?). I had mentioned to my rheumie in April that I was having ankle/foot problems and he said he would be interested to see what the MRI showed.
Here in BC we go on a wait list to get a family doctor, after almost 2 years on the list after we moved she came up & I accepted. The alternative is walk in clinics - you have to be there half an hour before they open, stand in line, and once they are full for the day, that’s it. Emergency takes hours. Imagine if you are really sick and this is the protocol, it’s kind of ridiculous.
I digress…so I’m waiting to hear from my rheumie and my NP - not sure if I should be in a boot and totally immobilize, call in sick at work or what. The physio I was referred before the MRI didn’t know anything either - kept asking me which ankle, moved it around a bit and said he didn’t know what was going on but that he would have to see me a few more times (!!!). He also kept asking be to get blood test, to see about the RF factor…obviously PsA illiterate.
Sending cyber hugs, the frustration you’re feeling is hopping off your post. Time now to educate your new Nurse Practitioner on all things PsA. Make it a project! Hopefully now your rheumy will ‘do’ something at least to ‘lead’ your care too. The way you write is that your rheumy is in some sort of ivory tower shuttered away from everything else and utterly uninvolved. Why is that?
Once the sports medic gets involved - but really it should be an orthopaedic foot specialist (you might also have to educate either the sports medic or the orthopod on PsA too) hopefully a reasoned and well thought out decision can be made about being in a boot or imobilised too. An assessment needs to be made on the damage that is occuring and how to minimise it as much as possible from further issues from using it. As of course the PsA is still rumbling along hopefully though still being somewhat restricted by your Rinvoq. But that’s a rheumy decision really.
I had thought our NHS was in a state in the UK but it appears it’s in less of a state than what you’re experiencing in Canada. My rheumy does lead my care in a way as everything is thought to be PsA until she decides it’s not. If that makes sense. So at least things get covered off that way. And I trust her care of me too. As for GP or primary doctors I do literally tell them what to do investigation wise and meds wise. I rarely ask for advice. But here in the UK everyone can be registered with a GP. Whether you can get to see them or not is another issue but there are workarounds with much of that too.
More cyber hugs. As to what to do when all of this is waiting to be finalised, in your shoes I would at least stay off that foot as much as possible. Oh and the physio can’t help you right now either. Later they can but not with now diagnosed damage which still needs decisions on what to do about it. A friend of mine got many of her joints in foot fused to ease the pain. It has seem to have worked for her. So I’ll just leave that there as a possible thought.
Hey @Northernelf, that is quite a journey you are on. I sure hope that you get good advice and timely treatment. Sometimes what seems like a disappointment today, turns out to be a blessing in hind site. We are in no better shape in Manitoba. My wife and I just lost our GP of 26 years…she very suddenly folded her practice and we are left without a primary caregiver. We don’t have the luxury of being able to choose a suitable and competent doctor…just take what you get and hope for the best…2-5 years wait from what I hear. Sadly, the current state of Canadian health care was preventable had there been diligence and anticipation in play from the top. Maybe @Poo_therapy could publish small “5 things you need to know about PsA” pamphlets to leave all over the hospitals, under the windshield wipers of doctors vehicles and staple them to bulletin boards.
One day at a time, keep printed records of everything said and done…take care!
Pamphlets for you guys isn’t a bad idea. ‘I have PsA - please the following before opening your mouth about what you think might be wrong with me’ And on the back would be a extra reading list too.
However it is our job as patients to be as educated as we can possibly be about PsA too and to own it in a way. What I do with any other medical specialty is write to them before seeing them, explaining how PsA can also affect whatever issue I’m seeing them about and asking them to read up on it beforehand if they have never heard of it before. I do direct them to sources too. And that includes possible issues arising out the meds I’m taking then for PsA too. I never walk in cold without telling them first about my PsA issue. Given it’s such a systemic disease it can literally affect everything.
I’m so sad about the loss of your GP. A two and a half wait is unreal. So what happens in that time? Do you have to attend the emergency room or A&E?
I like the approach of informing physicians before an appointment but I think that few would bother to read anything from a patient. I have taken time to carefully summarize my health history to one page only to have it set aside with barely a glance. Doctor shortage, and to some degree the way that they are paid fosters a hurried approach…more patients, less care. Really, how much can we expect from being allotted 20 minutes every 3 months? And that isn’t an exaggeration. Our system has trained the public to go to the ER anytime that care is needed/wanted when a GP isn’t available. Hence the ER waiting rooms packed with people with stubbed toes and sniffles. There is a bit of help as Urgent Care facilities are popping up to fill the gap between genuine ER needs and simple necessary GP input. I can’t verify it but I have heard that the average Canadian GP has around 2500 patients. In the last 15 years, some of the trades earn as much or more than physicians and have much better working conditions. My sons in carpentry and general contracting/building are doing very well.
Sorry to hear that Amos - ugh, it is truly frustrating. Urgent Care/Walk ins suck because you have to wait in line to get a spot for the day while you’re sick or go to emerg which can take hours.
Kind of what happened to our Okanagon rheumatologist - folded her practice to teach - something like 2500 patients let loose and the closest one I could get was Burnaby some four hours away, and like my Nurse Practioner he’s new and pretty green. First thing he said to me was why had I changed meds so often (which from what I’ve read is pretty typical of PsA). I met him once but it was a quick appointment - my old rheumie would have a nurse assess you before she saw you for like 10 minutes, didn’t realize I had pretty good care when I had it.
On that note - I did get a call from his office yesterday to follow up on the report of my foot/ankle…for a phone appointment at the end of July ! Geez, we have to try to live our lives during all this waiting.
The waiting is awful regardless of the reason why. I once virtually screamed at a rheumy (not my present one) about how would you like to live your life waiting in 12 weeks chunks only to be told at the end of one, you must wait again for another 12 weeks. And promptly burst into tears which enraged me further. The stupid consultant just looked at me. No empathy no understanding no nothing.
So it sounds like the your rheumy won’t be leading anything as regards the state of your foot then?
I have heard nothing - wearing the boot but still working part time. I almost feel it is sorer than it was, at least at night. Taking 1 Celebrex a day in the morning (with pantaprazole, so hard on the GI tract). I was told to wear it 2 weeks - guess I will call my NP for follow up but not much faith in that - it’s not like I’ll get another MRI to see if it helped. Kind of in limbo…so as one does I have read a lot about it but that hasn’t helped - in a non PsA setting you rest it and takes 3-9 months to resolved (thats that syndrome they were talking about). Admittingly, I’m not very good at rest.
It’s hugely unlikely at all you’ve anything like chronic regional pain symdrome at all. So I wouldn’t bother reading anything about that. Are you icing it at night? That might help. And keeping it raised. Knowing what the MRI said will always make you think it’s sorer too sadly.
I bought a special foot raiser pillow (you can buy them on Amazon) for a broken ankle long before PsA. To this day I still use it occasionally both for getting my feet up but also for lower back issues as raising your feet can help that.
Resting will help obviously., with pain issues if nothing else.
Your message brought back many horrible memories, and I empathize with every feeling you have!
PsA is still not generally known; I have a very hard working GP who missed all of the small indicators in the years leading up to my diagnosis. Even the MRI on my knee - two pages long, basically total disintegration - led to a knee replacement, but no referral to a rheumatologist until my recovery just wasn’t happening, months later. Then, the gap while I “failed” at the ladder of medications. If it hadn’t been for chancing on this site, and the advice/comfort you all offered, it would have been even worse.
I wish I could offer you more than my support. Luckily, the clever folk on here have the knowledge to provide concrete ideas and advice. Kind regards.