Wrong diagnosis / Confusion

Hey everyone,

So I wanted to write what’s been going on, probably for me to get my head around it a bit, but also maybe it could be a resource for someone who lives in my neck of the woods regarding Dr’s.

I will give a brief recap, but it’s a long post so those of you who don’t wanna read so much, or have read my old posts then just skip down to the section below.

A brief recap:
Onset of joint pain in 2008 (age 28), at first one shoulder and then over the next 3/4 years both shoulders, my back and one knee. Chronic pain, no energy, lack of sleep, and everything else that goes along with it.

In 2014 I was diagnosed with PsA. I also do have some visible Psoriasis on my skin. It was my dermatologist who suggested it, and I sought a reputable/recommended Rheumy in Berlin. Always the same name came up as the go to Dr. for people with Rheuma conditions, and so in a way I felt very relieved once I finally had my diagnosis and knew what was wrong with me, from a trustworthy/respected Dr in his field.

I guess I started with the usual MTX for beginners, as I was maxed out on anti inflams. I had some unpleasant side effects on MTX, but stuck with it, cos I thought it must be worth it if this pain will go away, and it takes time for it to start working. I lost my hair, I know this is just aesthetic, but I did love my hair, and it made me sad. But I thought- come on suck it up, baldness vs pain free is a trade worth making. But the stomach problems and headaches never stoped, it felt like they just got worse. I stoped taking MTX after about 6 months, feeling worse than when I had started on it.

Then he tried me on Apremilast. And I started almost immediately getting really bad pain in joints I had never had pain in before, plus other less palatable side effects which I wont go into incase dear reader, you are eating. I did stick with it for a while because my Dr reassured me that all of these new pains were coincidental. But I became chronically dehydrated and, not entirely trusting my Dr. contacted the manufacturer who advised that yes, for some people the drug can cause severe joint pains. I stopped taking Apremilast immediately, and the new horrible joint pain stopped. The Dr maintained it was a coincidence and that joint pain was not a side effect of Apremilast, but as I had spoken with the manufacturer directly and knew this to be incorrect, I lost trust in the Dr.

I found a new Rheumy and asked him to reassess me, but I don’t feel that really happened. He agreed with his eminent colleagues diagnosis. I went to a Rheuma rehab clinic, which did help a lot, especially the Cryotherapy, my flare up subsided, and as I was now nervous about the ‘hard’ meds I decided to just stick with the NSAIDs.

But, over the last year with all of the restrictions it has made it impossible for me to go for Cryotherapy. And I have had the worst flare up yet. As I talked about in my last post. I haven’t been able to shop for myself, or to complete day to day tasks. I had to minimise my hours at work to a bare subsistence level.

End of recap!:slight_smile:

So due to my current flare up I felt I needed to reassess my reluctance to trying those ‘hard’ meds again. For me they were hard and based on my experiences I was very nervous, so it felt like a big step. I also had this niggling feeling in my tummy that something just wasn’t right. I don’t post often, but I do spend a lot of time reading your posts, and your incredibly helpful contributions (thank you!) this is a wonderful resource. And having this resource of a community of people willing to share their experiences of PsA, and to which I could compare myself, I had this niggling feeling that somehow I was an outlier.

I searched for a new Rheumatologist, I wanted to have my diagnosis reassessed, but it seems they don’t like to do this (and question colleagues) so this has taken many months, but I needed to set my mind at ease, and I so was persistent. Eventually I found one who was willing to send me for MRI’s to make an assessment. I had 5 separate MRI’s and 2 x-rays.

At my subsequent appointment and looking at the results from the MRI’s my new Rheumatologist said there are no indicators of PsA at all, anywhere. Fingers, feet and the usual suspects with PsA all show no indications of PsA. But I was in the middle of my worst flare up of what I believed to be PsA, with all the usual pain I have had over the last 10 years!

So, he tells me that I have an L5 / S1 disc extrusion resulting in compression of the sacral nerves. And he suspects a double rotator cuff tear in my shoulders. But that basically he can’t help me more because it is not his area of expertise and that I need to see an Orthopaedic Surgeon, who can treat my knee back and shoulders. With no evidence of any rheumatic disease activity he basically said let’s check in again in a few months time to make sure, but thats it.

So, I found an Orthopaedic Surgeon. He came highly recommended (which to me now means nothing), but he does work for adidas in Germany and for famous sports teams, so I am hoping he knows something.

He sent me for more MRI’s of my knee and shoulders. He has diagnosed my knee; patellar maltracking & Hoffa’s syndrome. And my shoulders; Subacromial bursitis/rotator cuff tears. He said that there are no indications of Rheuma/PsA. But that my knee shoulders and back are inflamed, and there has been some permanent damage caused by this chronic inflammation over so many years.

He recommended starting shockwave treatment immediately for my knee, I had my first treatment yesterday, so it is too early to say if it will work. It is just a bit bruised and swollen right now.

I am not sure if my shoulders can ever get back to normal, its been so long I am not even sure what that means. But from what I understand if rotator cuff tears go untreated for long enough the tendons retract (combined with muscle atrophy) which makes treatment difficult.

I am not sure if I trust this new diagnosis either. I will just have to wait and see. If it turns out to be true though, it is a bitter pill to swallow knowing that over the course of these years based on the advice of Dr’s I have inadvertently made my initially treatable, separate, injury’s worse. I have always tried to be as active as possible walk, cycle, exercise whenever I could. I tried the recommend exercises, which is obviously completely different and incompatible with what I should have been doing based on this new diagnosis (if true).

I will now based on the advice of the Orthopaedic Surgeon be resting instead. I have physio appointments which hopefully will be working towards making it better instead of worse, as was the case before. I am taking different pain meds, which also work better. And If I need surgery then so be it.

If this is true I do feel sad that I lost over 13 years of my life and my 30’s completely, essentially needlessly. If It’s wrong and I do in fact have PsA then at least I didn’t lose this (and my hair!:wink: for no reason.

I guess I will only know that if the treatment works and I am ‘cured’. Which my Orthopaedic Surgeon surgeon seems optimistic about. But I will update with that when it happens. For now, I just don’t know, wait and see.

All the best to everyone

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That’s incredibly frustrating. I’m sorry that you’ve been through so much, and wound up being not properly treated. I do wonder though. . . . .It’s unusual to have so many “injuries”, especially at such a young age. Is it still possible that there is some underlying explanation?

That said, for the moment, it sounds like doing physio therapy for your joints is perfect, and probably should have been done some time ago. You can always see how this goes, and decide if you ultimately go back to the newest rheumatologist. Be cautious with the NSAIDs. You may want to ask your doctor about taking something to protect your stomach lining, and getting routine bloodwork if you’re on them for an extended period of time.

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Hey Stoney, thanks for yet another considered response. Yes, that was my thought exactly re so many unconnected injuries! I think that was part of why I am/was ready to believe my PsA diagnosis. I am still not sure if I believe this new diagnosis of many different injuries vs one underlying problem. But, it maybe worth noting that back in 2008 when all of this started my day job was as a painter and decorator. After work in the evening I was the drummer in a band, and my hobby was boxing. My Rheumy seemed disinterested in that but my new Orthopaedic Surgeon suggests these could have been the original causes of my ‘injuries’.

My old Rheumy did actually prescribe physio some time ago, but I didn’t feel it helped, id often leave in more pain, and have pain for days after. But that physio was prescribed for PsA. They were not aware of my (new diagnosis) disc extrusion/patellar maltracking & Hoffa’s syndrome/Subacromial bursitis/rotator cuff tears. So maybe appropriate physio for this diagnosis if it is correct will help. At least hopefully it wont make it worse.

Yes, thanks for the advice re my stomach lining. You wrote that before and I remembered to bring it up with my new Orthopaedic Surgeon who gave my tablets to protect my tummy. So much appreciated. Although I have taken mountains of NSAIDs and thus far (touching wood) had no ill affects. I must have the stomach of a hyena.

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I was just about to say you’re far too young for those separate injuries and so unless you injured yourself in your job, or boxing or drumming, my gut tell me you’re still too young for all these injuries without any instances of injuring yourself happening. A young person’s body doesn’t just break down with varying ‘orthopaedic injuries’ like this. It’s not a normal occurance even with your sort of activities unless you had instances of identifiable trauma when undertaking any of these activities. For example say you were a motor racing driver and had been involved in a crash or something, then your present collection of orthopaedic injuries would make a lot more sense.

Did any rheumatologist physically examine you as in do a PsARC exam? That is systematically feeling with their hands each of the 68 joints this far deemed to be affected by PsA and noting down on a chart which felt swollen and/or tender? I go to Bath in the UK which is a centre of excellence for PsA. My rheumy who leads the rheumatology dept there only does MRI’s etc if she feels there is damage. She doesn’t believe they can show inflammation that effectively. But a PsARC exam can. With a PsARC exam she has found inflammation on me that I wasn’t even aware of.

It’s this bit that worries me for you. Without a PsARC exam how could this rheumy say you had none of the inflammation symtoms you’re describing? The MRI isn’t always going to show it and he should have known that.

My thoughts aren’t probably going to help you much but personally I’d be wary of the orthopaedic route unless it was simple to fix the identifiable damage. Bursitis is classic PsA inflammation incidentally too. I had it horribly in one hip. It now gone due to PsA meds. Do you get the classic sausage fingers and sausage toes swelling? What are your nails like? How fatigued are you?

And incidentally how are your cats?

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Hi Poo,
Lovely to hear from you again, thanks for writing:) The cats are doing very well, little devils. I am defiantly not the master of my own home! How is everything your end? I hope you’re good.

I totally get where you are coming from re being young and having so many ‘orthopaedic injuries’ going on. It’s hard to know if these truly are unrelated coincidences, or, in fact an underlying problem, which previously seemed more likely to me. There is not any one individual traumatic incident/event that I can point to as the cause.

PsARC exam, thats the first time I have heard of it I think. There are so many acronyms though, and I am pretty bad with that stuff, which is why its so awesome to be able to draw from your knowledge. I cannot remember anyone laying hands on me that much, and I am sure I would. It sounds like you are very well cared for there in Bath, also reading your other posts, thats fantastic.

The tests I had with the (old) Rheumy were;
Blood tests, they said that was to check for inflammation
Ultrasound scans of joints
Two phase whole body skeletal scintigraphy Tc-99m methylene diphosphonate (MDP)
Genetic test(EDTA?) HLA-B27:01 -HLA-B27:146 (Negative)

My original Rheumy never did do any MRI’s at all. I have only had those done recently.

They did check my hands and my feet manually though as well as scans, xrays and (recently) MRI’s. I have never had any problem with hands, fingers, feet, toes, or any nails, nails have no pitting or anything. No pain swelling or any indications of problems.

I am fatigued a lot. When I am in pain and cant sleep. and when the inflammation is bad (which shows up on the blood tests).

I am aware that Bursitis is more of a symptom of something underlying. Just what is the big question. Is it PsA as the old Rheumy thought. Or double rotator cuff tear etc. as the new Rheumy and Orthopaedic Surgeon say.

And Poo your thoughts do help a lot. Whenever I get to see a Dr I never get the time I want to ask all of the questions I have. I feel like I am just ushered in and out. So this is how I get my understanding, by asking you guys. And with the Drs contradicting each other it is very hard to know what to believe.

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Hi Cal, it is nice to hear from you again.

I’ve got to tell you I was nodding the whole way through reading Poo’s post! There’s no way you should be getting lots of major “coincidental” injuries at that age, especially without actually experiencing the injury itself.

I didn’t realise you had blood inflammation markers (I don’t most of the time - lots of us don’t). What is the supposed explanation for them if it is not PSA? Because I think raised inflammatory markers are usually an indicator of something systemic, not a local injury.

I’m glad to hear you are going to Physio for your knee though. I don’t know anything about the other joints, but I have had maltracking knee problems, which were caused by inadequate rehab after a broken leg. I only had symptoms walking down stairs or down a hill, but certainly the exercises were very effective without hurting or being difficult, now it’s got to be a pretty big hill to cause me issues.

It’s also pretty common, as Poo says, to not see much on MRI. Some of us just don’t light up with local fluid and swelling, and fortunately do not have lots of bone damage. Mine don’t show much, a bit of joint space narrowing in my hands and some bony spors on my spine, both of which could also be osteoarthritis (to which I said Really? At 36?!?!). The fact that they could be osteoarthritis doesn’t exclude PsA though.

I’d be interested to hear how your knee goes. The physio and exercises worked like magic on mine - this all happened before I had PsA.

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I’m just wondering out loud…can prednisone success be an indicator of inflammation instead of injury? Prednisone dealt with my inflammation and fatigue issues very quickly but old injuries still hurt. I’ve stayed off of it but did cheat once with 10 mg for a few days and I was 80% better. Deal with that deep joint unseen inflammation and BAM! Relief! Cal, have you had any steroid treatment lately?

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That was the discussion that I just had with my rheumatologist! Success on prednisone shows that there’s inflammation. Areas that didn’t have success are the areas that may actually need a bit more, such as physical therapy to strengthen, etc. So for me, that’s my lower back, and shoulder primarily.

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Yes, I would second and now third that wondering out loud Amos is doing!

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Hi Jen, yeah it’s been a minute. I hope you are keeping well.

I know me too! That’s why over the years, on balance, and without any other explanation I believed it more likely there was a systemic problem rather than 3 separate coincidental joint problems (although onsets were staggered).

I am glad to hear that physio helped your knee, and I hope you don’t live in a really hilly area!:slight_smile:

I didn’t ask the Dr at the time if they could explain the inflammation markers. I had assumed (which is probably a mistake) that inflammation markers only give an indication that inflammation was present, but were not able to specify which joint/cause of the inflammation. - Then I suppose it becomes a matter of perspectives, I guess my old rheumatologist attributed this to PsA and my new rheumatologist/orthopaedic surgeon have attributed it to Hoffa’s syndrome/subacromial bursitis/rotator cuff tears, based on the results of the MRI’s. And that they both went even further to say that there is no evidence of PsA.

I have made an official request for all of my notes/results/files from the original rheumatologist, which is easier said than done so it is taking some time. But, when I have that then I will either ask a Dr. (privately if necessary), or an arbitration panel which is available here for free in cases of potential misdiagnoses to review my file and assess if there was ever any evidence of PsA other than my visible skin psoriasis.

I was not aware that it is so common that MRI’s are ineffectual in detecting PsA. And, this probably explains why my original rheumatologist decided not to have one done. But, this also raises the question, did he prematurely decided on a (PsA) diagnosis and therefore not perform the due diligence? He had other diagnostic methods at his disposal (MRI/PsARC exam as Poo described, and possibly others I am not aware of). Had he utilised these, he may have reached a different diagnosis.

But right now I think unless, and until, there is a successful treatment of my new diagnosis to a resolution it is maybe not possible to say. Only then, if treatment based on this new diagnosis is successful and, not just temporarily, would it be possible to infer that the original diagnosis was wrong.

Even though thats what the new Drs say, I am still sceptical, for all of the reasons you guys mentioned.

Yeah, I will let you know how my knee goes Jen. And it’s lovely to hear that yours got better.

Hey Amos, thanks for your thoughts.

No, I haven’t had any steroid treatment lately. I am not sure if I have ever had any. Apart from topical cream for my skin psoriasis. Maybe this is something I could ask my Dr about, I am definitely interested in getting more info about it.

Hi Stoney, hopefully this is not a stupid question. So prednisone is an anti-inflammatory drug? So it would work on either Bursitis/Hoffa’s syndrome/PsA inflammation? I will also do an internet search. But seems a bit odd if this is an effective/common anti-inflammatory medication that it has not come up before with my Dr’s given my inflammation. I will defo bring this up with my Orthopaedic Surgeon next week.

Morning Cal,

Here’s the thing there is no definitive way to diagnose PsA. 50% of us don’t have it show up in our bloods tests like you did. But the fact you did makes it a little easier. It doesn’t show in scans or MRI’s that much. So all this looking for definitive objective evidence is a moot point, hence being more worried about your second rheumy dissing the first rheumy’s diagnosis as it seems this second rheumy wants objective evidence and if he understood PsA he really wouldn’t be looking for much of that. He instead would be doing a PsARC exam on your (google it, it’s all there on the net explaining what it is and showing you what it is) which is stripping down to your knickers and vest and physically examining all the joints. And after giving you a dose of steroids to see if your flare responded to that as @Amos was talking about. And taking a detailed medical history of you and indeed your blood familiy.

PsA is diagnosed by way of exclusion of other things mostly, not though telling someone your age that you’ve now a collection of orthopaedic injuries without any previous traumatic event causing them. That does concern me the most. Hope this helps.

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Morning Poo,

Your comments always do :slight_smile: Yes, I know there is no definitive test, therein lies the rub. You can’t prove a negative either.

But there are tests for other conditions. Injuries for example. Would you say then that even if my new diagnosis is treated successfully, not just for a few weeks, but long term, and if I still don’t have any other indications of PsA I should still assume I have it? Because it is not possible to prove that I do not?

Ps, Bath is so schön, pictures of it make me a bit homesick.

Pps, what I can do though now is look for another rheumatologist to get a third opinion, and ask them to do this PsARC exam, even if absence of evidence is not evidence of absence.

@Cal you will figure this out, you seem to have a good head on your shoulders! These are my four experiences that led to my diagnosis Consider these in your evaluation:

-1. Fatigue, deep bone tiredness in which much mental energy is needed to get moving…and thinking itself can be an effort
-2. While rest helps injuries, PsA is often at its worst while the body is at rest. During the day I limp around the house. But getting up for a pee after being horizontal for 3 hours requires a cane for support due to foot and knee pain/ stiffness.
-3. Pain and stiffness backs off with movement. An injured ankle doesn’t get better by walking in it. My rheumy always asks me “how long does morning stiffness take to subside?”
-4. Some evidence of psoriasis…the extent or severity doesn’t matter. My psoriasis has always been the least of my concerns.
I think that these four basics could settle some of the mysteries you are experiencing.
Unless you have underlying medical reasons not to, 7 days of the right dose of prednisone is handled well and believe me, you will know what it can do for PsA type inflammation if you have it. Like others are saying, it is the combination of evidence and good science blessed with experience that gives the “blood hounds” their conclusions. Just be careful and follow doctors instructions, You can have my super hero cape that I used while on prednisone!

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Amos, cheers mate. Quite often I feel like a bit of an idiot fumbling around in the dark so that’s nice to hear.

Re Prednisone. I have been reading about it a bit. I was planning on asking my Dr, but as its an anti inflammatory, I can’t right now. The Shockwave therapy (SWT) I am currently doing works in part by inducing inflammation. I have also stopped taking all NSAIDs as they would counteract the SWT. Worth noting that I have no extra pain right now since stopping NSAIDs. My knee does feel a bit better, but it is very early days, and I know better than to assume this will be permanent.

My lay persons understanding of Prednisone from what I read is that it is a broad spectrum anti inflammatory medicine, is that correct? So would it reduce inflammation indiscriminately, whether it is caused by Rotator cuff/Bursitis/Hoffa’s, or PsA? If that is the case then I assume if it did help, it would not assist in eliminating any of these potential diagnoses.

Thank you for your thorough description. And for sharing your personal experiences with me. Comparing your experiences of PsA, (if they are typical) to my own, I would have to conclude many of mine are atypical:

  1. Fatigue, yes when I am in pain. But I would not describe it as being mental, or that thinking was an effort. I would say more to do with lack of sleep because of pain and not being able to find a comfortable position.
  2. I always have more pain after exercise/sport/walks etc. This seems to trigger my flare ups. After resting for some time (can be days or weeks when it’s bad) normally the pain subsides.
  3. I don’t think I get morning stiffness. If I did, as you describe, I am sure that I would be able to identify with what you say. For example, today I woke up feeling ok, but I just went for a 8km walk and now Im stiff as hell and in pain.
  4. yes, minor psoriasis on my elbows.

I want that super hero cape! I also want to confirm what is wrong with me. And I am thinking it has to be done by a process of elimination, that’s the only reason I am unsure if Prednisone would help right now with finding out (as I asked above).

I just wanna say thanks again to everyone for your valuable insights and willingness to share your experiences with me while I try and figure this out.

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