Not a trace of PsA... second Rumy was right

[nickace]

Hi Guys,

Its been a long time.
I wanted to shout out and let you all know how i ended up since being told by my second rumy that i didnt have it.

Thanks for all your help and support.

Always question important stuff and seek other opinions. Im not saying most doctors are wrong in theyre assessment but anything could be at play and they are only human.
I could still be on all those horrible drugs thinking i had PsA and nothing working.

All from the simple diagnosis of a very old man who decided because i had scalp psiorasis & pain in my joints decided i had psa and prescribed all mannor of horrible medicine.

So the 2nd opinion Rumy Daniel Lewis. of the Lewis Institute St Kilda Vic, Australia
made me fill out about 20 pages of stuff prior…
then he asked me my entire life story, then looked at all my scans, blood work etc, then examined me physically all over. this was back in September last year.

then he said…

1. Syro negative - is it possible to have psa and be syro negative… sure - but much rare’er.
2. no inflamitory markers… your first blood a month ago was slightly higher, then since been normal. he said you would be going up not down.
   some poeple have no indication in the blood but again much rare’er.
3. Nothing detected on bone scan. then he drew a picture for me of what happens in the wrist with PSA and said it shows up like a christmas tree on a bone scan.
4. He cannot find anything wrong when examining me.
   THEN he said - with one or maybe 2 of the above perhaps… but all 4… Its in the BILLIONS that you could have PSA. Billions
   There is simply no evidence to suggest you have it.
   Could i be wrong? ofcourse. Could you have it and its so minute that we cannot detect it. Sure. its possible. ANYBODY COULD HAVE ANYTHING that we cant detect yet. He said “Im gonna go out on a limb and say - You dont have it! as thats the most likely explaination of why we cant detect it accros every method” each method reinforcess you not having it.
   I like him. he is very sought after and hard to see and he is known for getting results for people when others couldnt - hes on advisary boards.
   I had gone in to this appointment a completely broken man. expecting to just hear the same thing the other rumy told me. Had not dared hope for a miracle.
   But the miracle happened.
   I questioned him hard.
   Then what have i got then because Im in pain everywhere?

he said I have central sensitization syndrome or Fibromyalgia.

he then explained that the early drug abuse and many large traumatic moments over the course of my life were contributing factors and consistent with other patients.

it took me a while to accept that the reason for my pain and weakness was brain pain
Out of 31 i score 21… Fibro range is above 14.
So weather i have PSA or not i definately have brain pain/fibro he told me

Daniel noted I have quite bad pain in many areas. with no explaination other than very tight muscles everywhere. so my joints are under pressure and combined with the sensitization this causes pain.

Then along the way im trying to let go and move forward and beleive there is nothing physically wrong with me… but multiple sources cast doubt… you guys told me this was rubbish… and the assesment of dry scalp + pain = Psa was reasonable
then a doctor said… it can be syro negative at first and come on later…
another doctor said the same…
Its been a long emotional battle
trust the specialist.
im doing Yoga, and meditating and seeing a Shink and therapist.
and im better than ive been in years
relaxing and meditating has really helped…
and it has taught me alot about myself and that im very tense most of the time and ive learned to identify and relax.
The main thing that solved my problem was “Knowing the Truth”
at my worst i was unable to hobble very far from the house…
Know the truth… pain but nothing wrong with ankles… they have been checked.
NOTHING WRONG
so walk
dont try… just walk
This worked!
my brain is like a small child… “No i dont want to go for a walk… Cry Cry… Pain Pain.”
“No we are going for a walk… be an ankle. i dont want to hear it”
“Screeam cry pain pain… and then a little while later… fine!”

my ankles are 100% cured!
im still working on my wrists… they have been in pain a lot longer… im doing well
and the yoga stretching everything is helping with my tightness.

No horrible drugs for me.

I went in to my new job and decided not to be that person who needs help carying things and cant do stuff.
I can do everything.
There is only one way to not be sick and that is to not be sick… and that has worked…
I Know the truth… nothing wrong with me and i can do anything…
I can carry servers. lean over desks. under desks. im fine
go to flights to sydney and have no issues.

Its a miracle!

Fibro is still a very horrible disease… sensitization is the reason all the PSA drugs made me so ill.
I manage it well though it does not manage me. its that simple.

Thank you to all who gave me advise and assistance when i came to you all a broken man with psa diagnosis after advice.
And keep up the good work

Nick

[Jen75]

Wow Nick, what a journey! I am glad you found the answers you were looking for!

I do feel I need to put a little information on this thread - not directed at you, but for any newbies or others who might be wondering about their diagnosis;

• Seronegative usually refers to the status of two markers used to diagnose Rheumatoid Arthitis. A negative result just means you are unlikely to have RA (but not impossible). It isn’t meaningful in the diagnostic process for PsA (except to rule out RA as a diagnosis).

• About half of all PsA patients don’t have high inflammatory markers - so this is hardly a rare group.

Ok, that bit for others aside, it sounds like you found someone who not only spent a lot of time with you doing thorough examinations, but also went through your history in detail. And gave a great explanation of how pain sensitation works, in the context of you and your history. I’m really pleased you’ve found a specialist you work with so well.

I know meditation helps me enormously with all sorts of things, including PsA pain.

It also sounds like you are slowly doing a great job at de-sensitising your pain system, which is really no easy task! I hope it all continues to go really well for you

[Sybil]

Hi nickace.

It’s a complex story and a difficult journey you’ve been on. It’s great to hear that you’ve got to a place that makes sense to you.

What you say about the approach to fibro rings a lot of bells with me, I have a family member with very severe fibro who has really, really got to grips with the condition in the last couple of years, the turn around has been astonishing. It would seem that the latest thinking about fibro involves making the psychological / emotional component central to treatment. In other diseases, ‘attitude’ is important but it looks like with fibro, attitude in the widest sense of the word is absolutely key. I speak as someone who doesn’t have fibro so if I’m over-simplifying, as I may well be, apologies to anyone who is battling the horrible thing.

Like Jen, your rheumy’s comment about sero-negative foxes me. With PsA there are few certainties or, at least, few facts which rheumys I’ve met unanimously endorse. There are things I’m damn sure about from what I’ve learned here and what I’ve found from other very reliable sources but what really matters is finding a doctor who is just as sure and that can be difficult. However, the sero-negative thing stands out as being something that just about every medical practitioner I’ve met (too many!) agrees on … i.e. that PsA is a sero-negative spondyloarthropathy. And currently I see one of the foremost rheumatologists in the UK.

The main thing is that you are so much happier and, by the sounds of it, really fighting back against fibro. More power to your elbow! And good to hear from you.

[tntlamb]

You might want to check out one of our newer communities: https://www.lifewithcentralpainsyndrome.org/

For others following this thread, at least 2 and likley 3 of the 4 things your doc mentioned have zero - zip to do with PsA which is a seronegative arthritis non dpendent on inflammatory markers which usually affects the distal joints (those closest to the nail) in fingers or toes first and occurs 85% of the time after psoriasis.

Thats not to say your doc was incorrect in saying you don’t have it. I just don’t want folks to assume your experience is theirs. 18 of the tender points for PsA are the common to the tenderpoints used in FMS diagnoses. (PsA requires nine as opposed to fourteen points but the average with progresses disease id much higher Central sensitation is not exclusive to either disease, but is usually the result of under treatment of which ever one it is.

[Fatfinger]

I’ve always thought PsA was always seronegative and positivity only meant 1 thing, rheumatoid arthritis. I could be wrong though and there are far better experts than I here.

[Jen75]

Spot on

[nickace]

Thanks everyone who commented.

I’m just not sure now…
Has the ruma bs’d me to try to stop me worrying to reverse it to help? Do doctors do that? Or is he possibly wrong.
In any case I think I should get another opinion. But actually start over. Back at the skin doctor… I was unhappy with mine. Was more like I was sent to confirm scalp ps and he confirmed it.
Them I asked about the face and he said it would be to… All other dermos said face was light perri dermatitis.
I have a feeling this is likely correct.

Ruma Daniel actually said… I don’t think I’m wrong but even if I am, since there is nothing detected we are not wasting any time by not treating it… So don’t worry.
Do you agree…?

Osteo that needles my back every week… Said… You can have symptoms but no damage and it will appear later…
But since has changed her opinion on me… She says if I had ruma or psa I would be much more stiff… And it seems my issues are very tight muscles, when released off, the pain in the affected joints disappears.

Before I knew what was going on I would hurt my wrist Again!! And think. Oops that shopping must of been to heavy or that job with the screw driver to much… I hurt it again.
But now I know that it comes and goes when it wants to regardless of what I’ve done and I can carry heavy shopping on other occasions without issues.
This was another point against it being psa.
I’m very confused.

[nickace]

He also said if I follow a certain diet I’ll never get it

[Sybil]

@nickace

He also said if I follow a certain diet I’ll never get it

That does sound rather dodgy nickace.

Quite a few people have fibromyalgia as well as PsA though. And it sounds to me (from the little I know) that the things you are doing currently would help with fibro, plus of course you say you are feeling much better.

Being confused isn’t unusual around here, but we all want as much clarity as possible and personally I think it’s great that you’ve responded as you have to the comments - that open mind of yours will get you further, if indeed there is more to discover / clarify.

Don’t panic, 'cos you are doing okay, possibly rather more than okay & that is worth a lot. In your shoes, yes, I would seek another opinion but I’d probably focus primarily on continuing some of the strategies that are helping so much.

[Jen75]

Honestly nickace - you sound like you are doing so very much better that is seems likely that what you are doing has to be mainly right. If things change, the improvement goes backwards, all of a sudden you can’t carry those servers again (even though nothing you did changed), then it is always worth keeping an open mind to PsA. In the meantime, if you’ve got that miracle, then its really your call whether you continue to worry about it or just get on with it.

Our points were simply that some of the factors you mentioned don’t rule out PsA. It sounds like the Rheumy has some really strong reasons for believing you don’t have PsA, but we are hearing it all third-hand, so its very possible that he’s not a great communicator (most specialists aren’t!), and so its a bit unclear how some of the reasons you have spoke of relate to PsA, you know, the chinese whispers effect.

That doesn’t mean his dx is wrong, or that you should doubt it if it is working for you, but, we do like to keep things factual around here, particularly for the newbies who might be quietly skulking in the corner reading all this (because we were all one of those, once).

That said, if you do have concerns, there is nothing wrong with a second opinion (and yes, the diet thing sounds dodgy), however you just need to present the same information to both professionals so they can do their job. As you are doing so well at the moment, that may be a little tricky.

[tntlamb]

Don’t fix what ain’t broke. This doc has done you some good. And yes diet is huge. If I was betting man (actually I am) I’m guessing you have an older doc who is not aware Dr Google is always in the shadows and for some explicable reason folks will believe some stranger they have never met on the internet over someone who has spent 16 years preparing/studying to offer an opinion who has actually examined a patient and applied the book knowledge to that examination… IF he doesn’t frame what he says just right.

[nickace]

Thanks Jen and tnt…

I’m always in a state of not sure. My rumy did day stay of the internet.
But I can’t deny that you guys are the best source of accurate knowledge and experience.
My pickle is that my wrists and back still hurt…
And even my fingers on occasion now.

Over the past 6 months my perception of my pain has changed.
Before it waswas… Oh no if hurt my wrist Again… It’s gonna leave me unable to do much for weeks…
Now it’s… The pain ain’t real so I just do everything… And it seems ok. Despite the pain being there I have not lost function and can do it.
But the pain is there.
My ankles are cured almost no pain… But when there is pain I can still walk through it and it goes away…
I guess because my wrist and back pain have been around longer it’s harder for my brain to let go.
And it’s very possible that I did actually injure them the first time.
And in the case of my back there is torgions or something being the underlying cause with the sensitization making it far worse…

I appreciate that you have said relax and don’t worry… But the issues with my wrists and guiding able to do stuff… In your experience fits that sound like psa to you?

[Jen75]

We aren’t medical professionals (well at least I’m not), so my first thing is you need to raise it with your Rheumy if you are worried about it. All I can give you is my experiece.

My experience is that I can’t “walk through” PsA pain and it goes away. Stiffness often reduces with activity, but if I’m in a painful flare, then significant activity generally makes the pain worse - so I keep as active as I can, but at a reduced level. My experience is also that when there is significant inflammation in my joints, I simply CAN’T do some of the things I can where there is little or no inflammation, irrespective of the pain. I just can’t do them, sometimes it’s not even terribly painful, its just that the joint won’t work the way it’s supposed to (or at least always used to for me).