Am really confused.

[jasmine19]

Hi all,

i was supposedly diagnosed with sero negative non eorosive rhuematoid arthritis in 2011, i was put on mtx and sulfa, then had x rays etc bloods were normal ESR slightly raised, i had major flares really tired hands could barely use etc, then had ultrasound it was clear, just had MRI no damage shown in hands hands are swollen painful am i am deforming and yet no evidence of RA in scans.

am in pain on morphine patches and paracetamol.

am bipolar.

now have got to have MN BONE scan to test for evidence of other conditions and the root of my pain.

i asked for a referral to london hospital which i saw a few weeks ago, the consulant there said scans can be normal does not mean you do not have disease,

he thinks its sero negative RA he siad you defintely have arhtirits.

i have no idea what the hell is going on and really really worried that i am going to be told its all in my head and there is nothing wrong with me if you saw my hands you can see something is and london hospital is saying its sero negativeRA local hospital has no clue

am waiting for notes to go so can transfer to local hospital

am really frightened.

[Hidden]

I have PM'd you xx

[Someonesmother]

sorry you afre feeling so worried. I am also sero negaitve and every time I see a registrar I get told it is only Fibromyalgia until I see proper rheumy and am once again told no that is rubbish it is sero negaitve. Anyway, try not to freak pout too much it will cause you to flare more. will you be under the London hospital or just the local hospital. Can you make appointments to be seen in London and just check ups at the local one? There will be ways around it if you have an issue with your treatment. Good luck and let us know how you go.

[thenortherngal]

I have a very similar profile and understand your concern that people will say is in your head. Worth saying I went on to enbrel (etanercept) last year and it helped a great deal though I still have issues. Stick with it and don't let people persuade you you're imagining it - it seems there is a subset of us with a similar pattern so you're not alone

[barbieg]

I am really sorry you are in so much pain. My husband is suffering sudden onset of terrible pain in both hands which are swollen and red . He has been to the doctors 3 times, had blood tests and an X-ray. Gout has been suggested. I was wondering if it could be some form of Rheuamatoid Arthritis as I have it. He was given Naproxen 250 mg, but they don't have any effect at all. Is it only your hands that are affected like him?

[Hidden in reply to barbieg]

Barbeig - have they tested your husband for gout yet? There is a conclusive test they can do to rule this in or out - at least one less thing to wonder about.

[barbieg in reply to Hidden]

He did have to go back and have another blood test after we asked about gout, but haven't had the results yet. Would it show definitely as gout then?

[Hidden in reply to barbieg]

I believe gout shows up quite distinctly and is easy to differentiate from RA/ PsA or other types of inlammatory arthritis- uric acid crystals or something. My dad suffered from severe gout but only in his feet.

[barbieg in reply to Hidden]

Thank you so much for taking the time to answer me. I shouldn't have hijacked the thread really, but it rang a few bells. Hopefully we will have some results soon.

[oldtimer]

I often feel that the health professionals are thinking that it is all imagined. Analysing when this happens, it seems to be when they are unable to decide or think what treatment will help me, then they get defensive. When there is a clear way forward they seem to accept the problems that I have.

I have sero-negative RD (I prefer to call it rheumatoid disease as it affects much more than just joints!). The time before last when I saw the consultant, he seemed very dismissive and made no changes to my treatment, so I was surprised when I was seen again in only five months( apparently was put down for 4 month review) and this time offered a steroid injection as I was "suffering so much". Thus despite no flares since last seen, and having a flare the last time!

Sometimes also I think it is the comparison with the last person that they have just seen - if that person was difficult to sort out they don't have enough compassion left for me!

So don't take it personally...they are human being and are fallible and have feelings too.

[nomoreheels]

Hiya jasmine19. Firstly welcome to us here & secondly you're not alone in how you're feeling just now. I'm fortunate (!) in that I have seropositive RD & so I was comparatively easy to diagnose but that doesn't mean I can't empathise with you being frightened & frustrated that you haven't had a "confirmed" diagnosis just yet. As I understand it those diagnosed with seronegative RD don't always respond as well to some of the meds used to treat seropositive RD but a bonus (!) is you're likely to have less erosion or the other risks associated with seropositive RD. Even though it can be more difficult to treat at least the Consultant has confirmed you have some form of arthritis, although it may not seem it that's a good sign, he's just needing further imaging to determine exactly what hence the NM bone scan I would think. A look at these links from the NRAS website may enlighten you nras.org.uk/making-a-diagno... & nras.org.uk/seropositive-se....

Try not to over think what's happening. I know that's easy for me to say but the more you worry the more likely things will feel worse & you risk flaring & you don't need me to say that isn't good!

The best thing you can do if you have the opportunity is to ask the Consultant to talk you through exactly what's happening & what his thoughts are regarding continued treatment in an effort to bring you under control. Alternatively maybe talking to someone on the NRAS helpline could help you? It's a freephone number 0800 298 7650 or if you'd rather not speak to someone you could write your thoughts or questions down & send an email to [e-mail]. I'm pretty sure you won't be the first person they've spoken to or who's contacted them feeling frightened, needing to know just what's going on & needing some reassurance.

The local hospital will receive all test results done at the London hospital & if it's a tricky form of RD that your allocated Rheumy has not got a grip of he should be able to determine the best course of action once he's read the results. It's possible of course that all that's needed is your meds tweaking in dose or even changing & trying something else entirely. But one thing you shouldn't do is give up hope. You will get there it's just that it can take a few tries with different ones before the right mix for you is found.

If you need any more help or support just drop a line on here & we'll do all we can to try & help. Take care for now & do let us know how you're getting on.

[Hidden]

I am in a very similar situation to yourself. I have been taken off and kept off all drugs because I'm so intolerent of them all - having tried three DMARDs over three years since diagnosis in 2011. No one has checked my inflammation levels with ultrasound as my rheumy doesn't use this method. He is happy with examining by hand and relies on my blood markers. I'm convinced he's going to be dismissive of me when I see next a week on Thursday. My GP has suggested that I email him a list of my current symptoms but I'm really worried he will read them and say it's all CFS or Fibro as they could fit this quite easily. My ESR is creeping slowly up just now - today at 38.

This barely reflects how much pain I'm currently in at all but I try to play down the pain for fear of them thinking it's all an overreaction because there's no sign of swelling or boggy joints anymore.

I too am classed as seronegative and non-erosive and find this more difficult than I do when I was first diagnosed because things were so much more obvious then for me with "classic synovitis". My hands have changed shape quite a lot too and are very weak but I think with me a lot of this is OA/ wear and tear. Same goes for my back and neck. I keep hoping it will all just fizzle out one day and confirm that it was all hormonal or in my head or some kind of reactive arthritis. Anyway Jasmine you aren't alone.