Dazed and confused

Hi All, bit of an emotional wreck at the moment and unsure whether I'll qualify to have dealings with NRAS much longer, having only just found the comfort and friendship of the site. I went to my rheumy appointment this week fearing what side effects I might get from any change in meds but very much looking forward to hopefully getting my life back sometime soon. Instead, I've been told that there's a good chance they've been misdiagnosing me for 15 odd years and what they thought was sero neg with a bit of osteo thrown in for good measure might be fibromyalgia (finally diagnosed a couple of months ago) and a rather aggressive form of genetic osteo. I'm now awaiting an X-ray appointment to check the deterioration in hands and feet since last time and see if any of it looks RA related and an OT appointment to teach me how to use my hands (?!). Instead of changing my meds to something more effective I face the prospect of them reducing what's been effective so far and booting me out the door to fend for myself. I'm usually pretty stoic - as I mentioned in a previous blog, I'm sometimes my worst enemy when meeting medics as I try to put on a bright face, but I actually started crying at this appointment and have found tears quite close to the surface ever since. Trying not to get too bleak until I know the score for certain. Whoever thought there'd be cause to be upset at finding yourself RA free?

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  • Gosh what a shock, are they really sure the diagnosis was wrong?I have serongative ra and fibromylagia as my diagnosis?.Also if the meds are working why should you stop them?

    They shouldnt boot you out the door either keep going and good luck x

  • I am sero negative and have visible RA for 21 yrs, so they have to look at the whole picture. Good luck and maybe this path of treatment will give you more relief. Keep a positive outlook if you can and hope for a new start :)

    Take care, Nancy

  • Oh no - I would find this equally disturbing Mistymeana - but please don't think that this means you don't have to have dealings with this site because you don't qualify. There are plenty around here who don't have a diagnosis of RA - but have some other form of inflammatory arthritis or perhaps OA alone. I often think that one day my consultant - whom I only see every 8 months even though I'm only in early stages - could turn round and say "well if you had RA it's gone away and there's only some wear and tear left now in your hands". He even said "I'm diagnosing you with RA but keep an open mind because this could change".

    Surely the fact that you've been taking meds for RA which have worked well must mean that it is inflammatory by nature because if it was OA alone then the drugs wouldn't have touched it?

    Also it's awful that they've had 15 years to find this out and they've been telling you to put all these powerful drugs down yourself without good reason if it turns out they are right that it's not RA? I d would be just as devastated as you obviously are but I agree with Summer - I hope you can argue that it's wrong that they boot you out if it turns out it's not RA as they suspect? Please don't stop coming here yet - we all need to know how things like this can happen so as to be wary of assumptions etc so your experience is every bit as valid as anyone else's on here and you are still in pain after all.

    If you do feel you want to look elsewhere for support and info and if haven't already tried it the Living With Arthritis forum on Arthritis Care is very good as well. Tilda xx

  • That must be so upsetting, but it sounds as if things are still up in the air so it all still might change. I think we do get used to living with what we've got so I can understand that changing now feels really as if you've had the rug pulled away from you. But do remember that you've coped for 15 years, so you must be pretty tough. And you'll cope again in due course, but perhaps you need to have a period where you do allow yourself not to be tough and strong and tell the docs what you really feel? But good luck, Polly

  • If you have been taking meds that have had any positive effect at all, then please do try and insist that you stay on the follow up list for the rheumatologist. If you go off those drugs and deteriorate, then they need to be able to see you quickly and review the diagnosis, because that would point to it being inflammatory.

    Also, if they don't think its sero-negative RA, then ask your GP to refer you for a second opinion to see if its spondyloarthritis (which is also sero-neg but can be much harder to diagnose) - for that you really do need to see a spondyloarthritis specialist because many rheumatologists just really don't know enough about it.

    I definitely wouldn't be accepting of a fibro diagnosis too quickly, especially if the RA treatments had any positive effect at all.

  • This sounds a bit like a recent experience ive had. Im just surfacing but will send you a longer message later. Furst question i have us what did they base your diagnosis on in the first place? What are/were your inflammatory maekers?

  • Hi,

    First if you have pain and all the symptoms you describe this site is ideal for you , especially as you get support that you obviously value and are a good friend to all of us.

    I think though the advice you have been given that "maybe, could be , might not be" is very very vague and has left you in a real quandary about what is wrong with your body, and unfair in a way, as they should have worked out a definite diagnosis before saying it may, might maybe not be RA !!!!

    Maybe you should insist on keeping your regular treatment until they get some solid evidence eg your X-rays and blood tests, of what is wrong before he guesses it IS wrong, and over the last 15 years have they checked your inflammatory markers in your blood , in order to give you your drugs?

    It's possible though to have sero negative RA plus osteo plus fibro.

    I hope you get some real answers very soon and don't drop us! We are hear for you! Axx

  • Thanks everyone. Getting my fight back and decided last night to challenge the rheumy (saw her a few years ago and wasn't hugely impressed but hoped time and experience might have improved her). Not the best time to make such a decision as it took me hours to get to sleep! I've lost count of the times I've been told that my condition can't be active/deteriorating as the inflammatory markers in my bloods are normal, despite my GP admitting recently that she'd just been on a course where that was discussed as being one of the main problems with mapping the progress of sero neg. Just read up on uSpa earthwitch and many of the symptoms fit - even mentioned the heel pain I've started getting at the rheumy appointment. Due to see my GP in a couple of weeks so will discuss 2nd opinion then.

  • See if you can try and find out from NASS (National Ankylosing Spondylitis Society) if there is a spondyloarthritis specialist in your area - then once you have their name, ask your GP specifically to refer you to them. Its a really good idea to do a "body map" of where you get pain too. One of the best diagrams I have found is one that shows enthesitis points (these are the areas that flare in spondyloarthritis). The back and front diagrams are here: forums.spondylitis.org/ubbt... I hope you can just get straight into this as its a message forum. If you can, then right click and save as.

    If you can't access that diagram, then just find any outline picture of a human body and colour in areas that hurt, and put your name and the date on it.

    As for inflammatory markers - they are NOT a reliable way of assessing levels of inflammation, and negative ESR or CRP should NEVER rule out inflammatory disease of any kind (except PMR and giant cell arteritis which as far as I know are the only two disorders that have to have high ESR for diagnosis)

  • Good Lord! That is a body map of my pain sites!!!! Thank you so much - another tool in my armoury x

  • all i can say is we need you on here misty

    i have no diagnosis yet but this site provides you with some valubale experiences and home remadies half the docctors ive spoken to on the nhs dont know what they are talking about sometimes due to the nature of the pain and inflamation felt

    if the meds are of help their must be something that is wrong with your body not functioning proper and to change them is not the correct thing for them to do

  • I'm still waiting for someone to tell me exactly what I have.

    I know I have osteoarthritis because they can see that on the X rays...

    I know I have inflammation because they can see that on the MRI scan..

    I know that I share the same kind of symptoms as RA sufferers do...my feet and knees collapse, my back and neck hurt beyond belief somedays, the inflammation in my joints is visible and tangible..

    But I am sero-negative.

    When I asked my rheumy and doctor the simple question "ok, so I don't have this and I don't have that... what do I have?" the rheumy said "We are treating you for sero-negative inflammatory arthritis" my doctor said (and I appreciate his honesty) "We don't know. Rheumatology is one of the most complex fields in medical science and I can show you wall-sized charts of indicators, sypmtoms, types of arthritis, medications, data.... and that is but the tip of the iceberg. It would be nice to be able to say "oh look, you've got XYZ", but we can't. You are one of those rare unfortunates who buck the data and trends and baffle us. We can't be sure what you are dealing with. We do know you are suffering and we are doing our best to help you feel better. I'm sorry we can't tell you more yet. But for now, let's treat this as though it is RA and see what the outcome is. Meanwhile, we will keep testing and keep researching. "

    Honest words which made me feel a whole lot better. Sometimes, they just can't put their finger on it I guess!

  • Oh.. and though I may not have the right "label" behind me, I can honestly say that this site has been so helpful to me and supportive, I couldn't be without it now.

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