MRI Results, your thoughts please :-)

[janson]

Hi there @Cynthia I would definitely mention this to your doc, perhaps as a passing comment… it may be the very symptom that points them in the right direction.

It can be very difficult for us (non-medical people) to determine what might/might not be relevant, and sometimes what might seem to be irrelevant to us might be the final piece the docs have been looking for… I’m a firm believer in mention “everything”, even though I forget to do this myself often, as the conversation gets steered in other directions lol

How are you getting on these days? I hope all is as well as it can be for you just now!!! Hugs

[janson]

Yes, I understand what you are saying here @Sybil, and I do suspect that a considerable amount of what is deemed OA may well be secondary… the big issue I have with that is as soon as you mention a joint acting up (even if under 40) the response is usually “age” or “OA” and the search for something more appropriate seems to get forgotten… I do understand that 80% of arthritis is OA, but forgetting the other 20% being inflammatory issues really irks me… I wonder how many people could have been saved an awful lot of pain and disability if the OA conclusion wasn’t soo easy to jump on… ahh… well… such is life I guess

[Cynthia]

I don’t even know what’s normal and what isn’t… I always just assumed I could feel my blood flow… but then it stops sometimes for a minute while my heart is still beating (luckily )

Just like I never realised it was weird that it hurt when you press my chest… that’s just how my body works…

I am Okey… still waiting for a date… they will tell me on Tuesday so I’ll make an update after that

[Grandma_J]

The burning feet were absolutely horrible…no doctor connected that with PsA at the time…luckily for me, nortriptyline stopped it but I think the damage was in progress and I didn’t realize it until suddenly one day after a lot of trips up and down stairs my arches became really painful…like Seenie said, there’s no redness on the outside—all of it is in the inside. Another thing I didn’t realize is that my feet were slightly swollen for years—the only reason I know is because after I started Enbrel the swelling went away…unfortunately, the damage was already done and I have constant pain in my feet.

[janson]

Hi there Grandma_J, good to hear from you!!!

The only “burning” sensation I can remember having was in the syndesmosis joints (side of ankles, as mentioned above), but thinking about it now, it’s been a while since that was a problem, probably since being on the Mtx… and the MRI report doesn’t seem to mention any issues there (unless I’ve missed something in translation lol).

I have no redness anywhere on my feet, but my ankles do sometimes appear to be a little more puffy than usual.

Funny you say about the slightly swollen feet for years… my feet and hands have always looked puffy (not a single vein/tendon to be seen) and I have of recent times wondered if perhaps they have always been a little swollen. I guess I’ll find out if they start me off on Enbrel or similar one day

I remember you mentioning some time back about your alligator skin showing up after starting the Enbrel… I understood exactly what you meant by that (was busy at the time so didn’t stop to comment on it), my skin has always been surprisingly smooth (perhaps a little puffy looking)… but… since being on the Mtx I noticed that my skin doesn’t look soo puffy and does have a slight alligator type texture too, especially on my legs, and sometimes I even have “spare skin” on my hands too… hmm… will be interesting to see if better control of the PsA (or whatever this ends up being) will make any further difference to that.

My feet have always have a habit of swelling a little, even if only standing for a short while (and I’m talking right back into my teens)… had mentioned it to docs in the past but just got the big brush off… no surprises there, huh

Fortunately there appears to be no bony issues showing on the MRI and joint spaces seemed well preserved on x-ray (mind you that was 2 years ago), no mention of joint spaces on the MRI at all… it will be interesting to see what the radiology panel finds if they get to look at the MRI pics this week (the rheumy nurse was going to try to organise that).

I’ll be absolutely rapt if we are able to stop this in it’s tracks before there is any serious bone damage… not so sure about the tendon issues found in the MRI, but from what I read it would appear that tendinosis may be able to be fixed with rest then exercise… I’ll hold my judgement on that till I hear back from my rheumy, hopefully tomorrow.

I do hope all is well with you!!! hugs

[janson]

OK… so my rheumy (registrar) phoned me back this morning… she agrees that it appears the radiologist has reported only the ankle/hind foot, but her own take after looking at the pics goes like this:
The effusions in both the ankle and subtalar joints are pretty minor (about what I would expect, given the symptoms… hmm… given the meds I’m on (Mtx, Leflunomide and Tilcoltil) I would hope they would be keeping the inflamation at bay, but maybe not lol)
The tendinosis may well be from my valgus ankles, so she will organise some physio for that.
It also looks as though there might be minor inflammation at MTP’s (not reported on), which kinda points to RA… maybe.
She will reserve her final verdict until after the hospital radiology team have reported on the pics next Monday (hopefully).

So, here we go… back in the waiting game
Oh, but there is good news in there… no bony erosions.

I know that compared to many of you my symptoms are very minor, and am grateful for that… hmmm… or maybe not so grateful… if signs and symptoms were more pronounced I might get a look at some more effective treatment… as it stands just now it just more “wait and see” I guess…

My patience is definitely wearing thin
Oh well… I’m sure I can hang out till I hear what the radiology panel have to say… what choice do I have? (sighs)

[janson]

Finally an Update: Saw my rheumy today, and it turns out the MRI on my foot and ankle has left more confusion, rather than the hoped for clarity… After reviewing the scan pics the radiology panel feel they cannot give a definitive diagnosis as the inflammation and tenosynovitis showing on the pics could be from either an inflammatory arthritis or from mechanical issues (possibly the valgus ankles I’ve had all my life)… while I am grateful there are no signs of bony erosions yet, unfortunately that leaves us still sitting in the twilight zone as far as diagnosis, and therefore direction for treatment, is concerned… frustrating to say the least… but we are going to give plaquenil a go and see if that does better than the leflunomide did.

[Poo_therapy]

Very frustrating for you. It’s odd though they want you to have damage before treating. I thought the whole idea of treating was to prevent damage? They’re finding some level of inflammation anyway, so why don’t they think that inflammation isn’t anyway going to cause damage? Since it obviously isn’t ‘new’ inflammation for you either.

[janson]

Yes, @Poo_therapy, frustrating it sure is… and yes, when the rheumy commented on the lack of erosions I did make it clear that it would be really nice to keep it that way… unfortunately the pharmac requirements to be able to step up to a biologic are pretty definite, and the rheumy’s can’t prescribe without sufficient “evidence”, so really their hands are tied.

She would like to put in a referral for a stint at Queen Elizabeth Health, which is supposed to be one of THE top rheumatology centers, unfortunately it would be almost impossible for me to get there now that I can’t drive (it’s only about an hour and a half drive, but would take two days to get there on a bus, and would need to stay over somewhere on the way), I’d need to be there for 3 weeks and either get home, or pay heaps for accommodation down there, on weekends too… out of my reach at the moment. It would be great to go as they do physio, occupational therapy, education etc etc… this not being able to drive any more absolutely sucks!!! lol I’ll need to look further into seeing if I can find a way to get there I think.

[Poo_therapy]

I really hope you can find a way. It sounds like rheumatology just needs to be paying you lots more attention!

[janson]

Update: So, after some serious wrangling transport is being sorted (door to door shuttle I believe), weekend accommodation too… so on 2nd Sept. I’m off to Queen Elizabeth Health for their 3 week in-patient RECHARGE program: https://www.qehealth.co.nz/recharge

It’s not going to be an easy 3 weeks, with all the physio/fitness training etc… but… shoot me for being crazy… I’m actually really looking forward to it. At least this way physio/exercises etc. will be completed under supervision and there will be someone there to push me when it is needed while, hopefully, stopping me if I push myself too far I may even get rewarded with a massage or two, if I behave myself lol
I do hope I get to spend some real time in the heated/mineral pools too… that’s always awesome for aches and pains

They also give training about the condition and how to live with it, work around it etc. etc.

Although I’m sure my muscles will complain, bitterly lol, I’m hoping for a good experience all round!!!

[Poo_therapy]

That is just fabulous news. Well done you. Do enjoy it too.

[Jen75]

That sounds great Janson

[janson]

@Poo_therapy and @Jen75: Thanks girls!! It is going to be an interesting experience… their website states “world leading residential rehabilitation facility and wellness centre, with a range of healthcare services all working together”… I did 2 months down there when I was 17 (40 years ago lol), for loose joints (hypermobility) and although I’m sure things will have changed in that time I do have a bit of an idea what to expect… I sooo hope I get to have some AIX Massages (massage under showers of hot mineral water)… absolutely fabulous!!!.. the memory of that wonderful experience is still very clear

The big thing though will be I will finally be getting some physio treatment, have had none to date, Also the education on what I should/shouldn’t do when joints are rough will be good too… so far everything I have learned about PsA has come via my own research on the internet, mostly from what I have read around here, without which I would have remained completely ignorant… many thanks to all of you for sharing your knowledge and experience… invaluable!!!

[AnneJ]

Sounds like something we could all benefit from! Looking forward to hearing how you get on and hope it is as beneficial as it sounds it will be.