So now what?

Just come back from my follow-up with the rheumatologist. I told him that the intramuscular steroids didn't really help much, and apparently, this means he can rule out inflammatory arthritis as a cause of my pain. So now, I'm confused. He's given me an even woollier diagnosis than before - 'idiopathic polyarthralgia' (you've got lots of painful joints, but we're damned if we know why) - and discharged me.

The thing is, I can't help but feel that - much as I'd rather not have a condition as serious as inflammatory arthritis - he may not have entirely taken in the whole picture. After all, I did have raised CRP when I had my bloods taken (albeit that they haven't taken any since last December), I get redness and swelling around my hand and foot joints, and my blood vessels in these areas become very prominent. Surely failure to react to depomedrone isn't the main factor in excluding an inflammatory condition?

Or am I just wanting a better diagnosis so much that I'm doing the rheumatologist a disservice? Is it all in my head after all? Or should I ask Occupational Health to refer me for a second opinion?

A very confusing day, overall. And now, back to the grindstone. Let joy be unconfined!

12 Replies

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  • Hi sooty,

    Sorry to hear you not getting clear diagnosis. I have positive factor for RA, so was quickly diagnosed. You are probably relieved not RA?

    Hopefully, will burn itself out, with a bit of luck. It does leave you in a awkward position, but at least not putting more toxins in your body, which if they are n ot sure u have RA , they Are reluctant to do.

    I suppose the sensible thing would be to go back to your GP and have a good long chat as to what this means re your treatment plan, and maybe give it a couple of months before seeking a second opinion. Your GP should be able to advise.

    Just a quick query, were your injections done with image guiding, before I got them done this way they were of little use???

    Regards, Gina.

  • It was an IM injection, so it was given into my bum cheek by the GP! And a little of it leaked out, given that it was a 3ml injection. But I don't think that would be enough to make a significant difference to the outcome.

    I am relieved, but also not relieved, if that makes sense. If they could give me a clear diagnosis of something else that made sense, then I'd be properly relieved. But I work in the medical profession myself, and when professionals start giving vague diagnoses like this with the statement 'it could be due to hypermobile joints', I'm instantly suspicious that they're not really sure and are giving their best guess. Especially as - given that I'm a podiatrist - I had my feet, knees and hips examined regularly at Uni, and I've definitely not got hypermobile joints!

    Thanks for the advice, though - I'll book an appointment with my GP in a couple of weeks.

    Sara xx

  • Why aren't they taking more blood tests and find out what is wrong you. He is wrong to discharge you as he can't give you a diagnosis, he should be getting x-rays and other tests done to rule out ra and other complaints.

    you should get a second opinion as the last one isn't much good. Go back to your gp and ask for a referral to someone who can help you. Not knowing what is wrong with you is worse than the disease itself, as i have found out with my knee,once i knew what was wrong from a second opinion i am able to cope with until it is repaired in may. So sooty press on and don't give in and don't put up with the pain your suffering from.

    sylvi.xx

  • Thanks, Sylvi - I've got an appointment with the Occupational Health doctor next week (they're still trying to work out how much clinical work is feasible to expect of me), so I thought I could ask him if it would be a possibility for me to see the rheumatologist in the area I work in. The worst they can say is no! I'm always a bit reluctant to ask for a second opinion, because it feels like an insult to the guy I have seen already, but on the other hand, it could be important. And I'll talk to my GP and see what his angle is on the whole thing.

    The paranoia sets in after a while, though, and I'm really wondering if it's psychosomatic!

    Sara xx

  • no sara your not imagining thats something is wrong,i had to it against my regular gps advice, he wouldn't refer me and i saw another doc and they gave me a referral. I got a diagnosis that as i had knock knees that was the problem. So i was scared about going behind my regular gps back,but i was going so crazy i had to see a pschoanlayst to sort myself out. She said that the knee was the trouble with my mental state. My gp went ballastic and said that she should concentrate on getting me to come to terms with my knee the way it was.

    So my advice is go for a second opinion you will never find out unless you do i'm afraid.

    Sorry i am not of more help.

    Hope you have some success with getting a diagnosis.

    love sylvi.xx

  • hi sootyb i had blood test a few weeks ago and told i had the same as you but was but on anti imflammories,and have to go back in july,but before i go back i have to have blood test and x-ays on feet hands and elbows i think i would go back to ur doctor and get referred again,hope you get some answers soon so unfair xx

  • Hi SootyB

    So sorry to hear that you are struggling to get a firm diagnosis. A lot of people say that getting told you don't have the condition they've been testing you for can be a mixed blessing, as you're pleased not to have it but disappointed because you still have symptoms of something but now don't know what you're dealing with!

    If you feel the rheumatologist did not get the full picture, you could ask for a second opinion. This would be done through the GP and you can read more about this on the following NHS webpage:

    nhs.uk/chq/Pages/910.aspx?C...

    Or, if you accept the diagnosis, you need to speak to the GP about any other investigations that could be done, or if not who you should be referred to in order to get a confirmed diagnosis. You should also keep them updated if there are any new symptoms or if symptoms worsen significantly.

    I hope they get to the bottom of what's wrong soon!

    Victoria

    (NRAS Helpline & Information Coordinator)

  • Poor you Sooty. I understand exactly what you feel because I was told I was "inconclusive" by the rheumy the first time I saw him - although he did at least concede that something was going on from my bloods and raised ESR and CRP. I had a low positive RF of 24 but then when a negative anti-CCP came through months later he wrote to my GP saying that on that basis he would be unlikely to diagnose me with RA or put me on a DMARD next time he saw me. I thought about this and then decided to email the physio who had attended that first consultation and describe my symptoms. I did find Ibuprofen made a difference and later on when things got worse I was put on a short course of Prednisolone and that made a big difference so I think that was used as a diagnostic tool. But I also took photos of my swollen joints and sent them to the physio after the GP said they showed classic synovial swelling. I was determined not to come out of that second appointment feeling that he didn't believe me although I really didn't really want to be told I had RA either and certainly wasn't keen to be put on MTX.

    I haven't seen him since, and that was six months ago, which makes it much harder to come to terms with having this disease because it gives me the message that I'm not a priority and somehow, despite having been put on MTX and then told by my GP that the disease is still active - because the rheumy's diagnosis seemed a little half hearted. I now feel abandoned although I know realistically that I'm just a victim of NHS cutbacks where I live. And I'm about to start a second DMARD next week so am hoping combination of therapies works for me.

    So what I'm trying to say is that having a diagnosis isn't always all it's cracked up to be and now I worry about the drugs I'm on being too big a hammer to crack this nut - and then on days where I'm in pain I worry that it isn't a big enough one to crack this nut! Not the certainty I was hoping would at least come with diagnosis I'm sorry to say.

    So hang in there - you may well have sero-negative RA that is still at the Palendromic stage - but I'm sure no one thinks it's only psychological in your case and you still need to keep being tested for RA frequently as your bloods could change as I'm sure you know. TTx

  • Sooty, don't worry about hurting a doctor's feelings - it's your body after all. So do keep talking to the GP, the rheumy should have written to GP to explain why you've been discharged and your GP might be able to decipher the reasoning as lack of response to steroids seems a daft reason to me. And as others have said, ask for another referral when you think it right as you shouldn't risk your joints. Good luck & hope it all vanishes overnght. Polly.

  • I agree with the above. I've often found doctors unloading personal stuff on me and we need to remember who's who! Good luck in your pursuit.

    Cxx

  • Hi Sooty, I waited months to see a rheumatologist and when I was finally seen I was discharged too with a diagnosis of carpal tunnel and flat feet even though I had positive factor and raised esr. I spoke to my GP and he advised me to have a second opinion and I ended up paying privately to get this. I've since had further blood tests and am due to go back to the rheumy next week for what I hope will be a diagnosis. I sincerely hope it's not ra but like you I'm scared of being stuck with pain following a "wooly diagnosis". I suggest you go back for a second opinion. Best of luck

    Paula x

  • Thanks for the support and advice everyone. I may be getting in a tiz over nothing, but I'd prefer a diagnosis rather than just a description of a symptom with no known cause. The fact that arthralgia isn't actually a medical complaint does make me feel a little like I'm being humoured, even if that's not the case at all!

    I'll keep you informed, but in the meantime, keep smiling- it worries the opposition!

    Sara xxx

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