Had my first and by the looks of things only rheumy appointment today, which I have come away feeling a bit frustrated and relieved with.
On a positive note, because none of my joints cause me pain to touch or appear swollen and she said that the bloods done by my GP all came back clear, it doesn't seem likely that I have RA.
She is however, going to send me for an MRI on my lower back just so that she has "crossed all the t's and dotted the I's". She also said that she regularly gets patients referred to her that present the same pattern of aches/pains but have no apparent cause. Although it could be fybromyalgia but it's not likely as I don't fit that pattern either.
She said to wait for a letter for the MRI and she will write to my GP with the results.
So all in all, I feel quite frustrated as I'm no further to finding out what is going on in my body!! She did annoy me by saying " even though you are a bit auto-immuny" - not sure how many auto-immune diseases I have to have before I am classed as being fully susceptible (I currently have 3). Anyway, think I'm just in a grump now, so just picking fault lol.
As I said, I am relieved and whilst I was hoping to get the all clear from RA, I also thought I would at least have an answer to what else it might be (albeit naively). Just frustrated and feel as though I can't go back to my GP as he will just think I'm a hypochondriac!
I know I still have the MRI, so I will just have to sit tight I guess until I have those results.
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LouHDBS
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I was originally diagnosed with sero negative RA, then that was revised to psoriatic arthritis then last week, revised again to spondylitis. Also recently diagnosed with hypothyroid and lymphocytic colitis. If you've got back problems it may be that you have spondylitis . I believe I developed this 20 years ago but it has only just been diagnosed as such, so don't be too downhearted and keep questioning. I don't see how you can be a "bit auto immuny" you either have auto immune problems or you don't! Certainly, once you have one it seems that you will have others. I'm collecting them it would seem, with 2 being diagnosed within 2 weeks of each other! Good luck with the MRI. Clemmie
How vexing. Think as you say it's a case of waiting for the MRI results & see where you go from there. I wouldn't necessarily presume your GP would think you're a hypochondriac. He should recognise your position not having a definite diagnosis & I would hope help in the period between. Did she say to make an appointment with him once you have a copy of her findings?
No, she didn't. She just said she would write to my GP with the results. She was nice enough but did seem a little dismissive. I honestly thought she would perhaps do more in depth bloods - but there again, I am no expert, so suppose she didn't deem it necessary.
I think I will probably try and see a different GP to be honest, as I really had to push to get this far!
Just annoyed at myself for thinking I would come away with all the answers but I've had time to pull myself together, so onwards we go!
It's difficult for me to completely appreciate your situation as my diagnosis was cut & dried with no doubt but I do empathise as my h is in a similar position of no definitive diagnosis & he's today had spinal cortisone injections to see if that will ease his pain but is frustrated at no real reason for going this route as he feels all that is doing is masking the cause of the problem not getting to the route of it.
Hope something shows on the MRI & you from that are able to start some form of treatment.
Did she do xrays and scans? I originally thought I had RA, then Fibromyalgia but have now been diagnosed with Spondylitis. Hope you get a diagnosis soon. I know how frustrating it is when you're in pain and tests come back negative xx
Lou, sounds like you are in a very similar situation to me. My rheum my diagnosed me with a "self limiting arthritis" but then wrote to my GP and said "no sign of inflammatory arthritis". I am of course pleased with this but without a diagnosis I am now worrying about what exactly is wrong with me and I have to wait til November for any follow up.
So I do understand how you feel. We should be delighted with the no RA diagnosis but its hard to feel relieved about it without a different diagnosis.
Didn't your rheummy do any extra blood tests at all?
Nope, no extra bloods. She didn't see the need I don't think. As mentioned though, she is sending me for an MRI so all is not lost. I'll wait and see what she writes to my GP. Just got the long wait for an MRI now.
I really hope that the 4 months fly by for you and you are able to make some progress in the meantime. As some have suggested on here though, keep a log/diary of everything (if you haven't already) to take with you. It can only help I'm sure.
Yes I've started my diary now. Hoping it will help show some sort of pattern that might lead to a diagnosis unless it all clears up in the meantime (fingers crossed).
Do you know what blood tests your GP did? Mine didn't do many but the rheumy followed up with anti-CPP and ANA. Both were negative though I don't know if they are like the RF and not very reliable.
How are you now? I've had a worrying few days but feeling much better today.
No, to be honest I haven't a clue what bloods I had. I went through a phase of having that many I gave up checking what was what.
I'm a bit hit and miss, my joints have calmed down a bit but my eye has started hurting me. Although as of yet there is no red inflammation but I don't always have it when I'm having an iritis flare up. I will give it another couple of days and see if it settles down before traipsing back to hospital.
I have to say, I'm starting to feel like maybe it's just me and its all psychological or at the very least hormonal from having my last child. It doesn't help that my outlaws (its what I like to affectionately call my in laws lol), keep insisting I have postnatal depression because that's what my sister in law has!! (They originally thought she had Addisons disease before diagnosing PND)
Actually, I think your rheumatologist has probably done exactly the right things, and is still considering inflammatory arthritis - the MRI of lower back would suggest they are looking for signs of active inflammation there that would confirm a diagnosis of spondyloarthritis. Spondy is incredibly hard to diagnose as it doesn't have any specific blood tests to prove it, and damage on xrays or MRIs can take up to ten years to show up. MRIs can spot early signs of inflammatory changes though. Your other autoimmune conditions may have also contributed to the rheumatologist considering spondy, as inflammatory bowel disease (crohns or colitis) appears alongside and seems linked to some forms of spondy far more than with RA (though of course anyone can have any combination of autoimmunes).
So, yes, sit tight and see what the MRI shows, and be a wee bit pleased that you came across a rheumatologist who actually has considered the possibility of spondyloarthritis - many of them don't want to know and will just discharge you back to GP with a fibro diagnosis.
The first line treatment for spondy is NSAIDs, rather than DMARDs, so if you can take NSAIDs ok with your other conditions, and you need some relief, ask your GP about prescribing full prescription strength NSAIDs to take regularly and see if it makes a difference. If it does, then that is something else to report back to the rheumatologist as it can add more weight to an "inflammatory back pain" or spondylitis diagnosis.
I don't think anyone should feel guilty for wishing for a diagnosis. If you have got this far and don't feel well and have chronic pain of any sort then it would be a relief to know what is behind it.
But even having a clear cut diagnosis doesn't always help alleviate anxieties - the diagnosis needs to be robust and for all our symptoms to be explained - and in my three and half year experience on this autoimmune journey, that is rarely the case. It's so much easier to deal with symptoms when you have a name that you really trust and believe for it. Take care and don't be shy about pestering - for most of us with long term conditions that becomes the name of the game. Doctors are very well remunerated so please go back to your GP to find out more about the "auto-immuney"stuff and to discuss what you should do next . Twitchy x
I guess that even tho you are pleased your bloods are ok you want a " tag" on what's wrong!! I think the doc sounds good as some would just say if it troubles you again come back then your left in limbo. So ordering a very expensive MRI shows she is taking your pain seriously . I hope you get some answers soon as for most people that is the hardest time and you do need done ahige amount of patience in this game!!
If it doesn't settle tho my advice keep plodding away at the doc and keep a pain diary to show them when, how much pain 1 to 10 and where it is to give them a more in depth picture. Good luck xx
My first rheumy appointment went almost exactly like yours! I was so frustrated I could scream! He said that by his physical exam he thought I had osteoarthritis in my knees and probably tendonitis in my elbows (and I said to myself "both knees and both elbows???"). I then asked him, "ok, what about the pain in my hands?" He said that he'd run a full panel of bloods as well as hand and knee x-rays. When I went back in two weeks later, he said that all of the blood work came back as negative; the knee x-rays showed no osteoarthritis at all; but the hand x-rays showed definite RA erosion in both hands. So I have to give it to him, he admitted something was up. He gave me the diagnosis of Inflammatory Arthritis; put me on hydroxychloroquine (200 mg twice a day) and said to come back in 3 months. I know how you are feeling, and I hope that you can get some answers soon. Hang in there!
Please don't get me wrong, I realise that I am very fortunate to be having an MRI and have not just been sent on my merry way. I think yesterday I'd talked myself into thinking that I would have a definitive answer of what was going on, when realistically I knew this was probably never going to be the case.
It had occured to me - even though she didn't say it - that she is ruling out the possibility of Ankylosing Spondylitis, as I've had reoccuring iritis for about 4 years which I know can be another symptom. I shall just have to wait and see what the MRI throws up - if anything.
Whilst I still feel frustrated, I have taken some comfort that they are still investigating things at least and it could be a whole lot worse.
Patience is a virtue after all
Sounds like your rheumy's manner was a bit off-putting, making you feel dismissed. But I agree with the post above that said having an MRI represents significant progress! They don't arrange these things all that often and financial constraints can mean it's the devil's own job even to get x-rays done sometimes. An MRI is a serious diagnostic tool. Good luck and I hope you get some answers.
in reply to
Sorry, just read your response basically agreeing with what I and others have said. It is indeed frustrating but if a little persistence is needed sounds like you're up for it! And persistence usually pays off in this game.
I was told for over 20 years that my bloods showed no RF so no RA - despite recurrent joint problems that were getting worse each year. It was only when they developed the new test (CRP - which I was positive for) that they took notice. I was lucky as the local rheumy department was missing a consultant so they outsourced testing to a private hospital and the consultant there was extremely thorough with bloods, x-rays etc and made the diagnosis. So when I went to the local hospital again, the diagnosis was there in black and white - no more fobbing off. So I guess what I am saying is that if at first you get a no and still have lots of symptoms, try, try again. Dont let anyone tell you that being in pain is just one of those things - ask them what they would do if they were you - where would they go next to get treatment? And if they are convinced its all in your head, ask to see a psychiatrist so they can get rid of your "imaginary" pain....
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