If not RA then what is it?

Hello everyone not been on for sometime but now need a moan and some of your thoughts.

Just cone back from seeing new RA consultant, he as asked for an MRI scan of my hands to check for inflammatory disease, he thinks not as I don't have any swelling or redness which never have had even on initial diagnosis which was seropositive RA. My blood test show normal ranges and the rheumatiod marker is low at 24 although higher then when I was diagnosed.

I asked him if I had been misdiagnosed and he said not necessarily (but he would wouldn't he). He then went on to say there are different types of arthritis, the one that wears away that causes aches and pains as you get older(his words not mine) I am only 54.

Kicked in the teeth or what. I have been on triple therapy for 6 months and feel wose than when I started. I have pains in shoulders, knees, ankles, feet, elbows and hands, can't believe its OA., been on all these toxic drugs been up and down and my husband has been a brick.

All your thoughts will be welcome xx

11 Replies

  • Hi, sorry to hear that you appear not to have had a good meeting with the rheumy team, and welcome to your moans, we all have to let go sometime and each of us find this a good place as we know where your coming from etc.

    As to the different types of Arthritis, did he not mentioned that RA can come in different forms as well as OA. I wondered perhaps if this was what he was referring to, as I have read here of people talking about their different types. I don't have RA but have PsA which is very similar in the ways it masks itself, its when you see an x-ray when they can see the difference.

    As to OA you can get that in similar places to Ra, the difference is your pain, yes you read right the pain is different. I have Oa in my thumb joint and that is a different pain to the one in my finger joint. I call my PsA fizzing lemonade and the Oa hurt when describing to the teams, its the only way I know the difference.

    I hope you get some better news and replies soon. Take care. x

  • Thanks georje I know one thing, I am glad I am a member on this forum because we are all going through similar things and can be around for each other 24/7 xx

  • I'd love to help you understand but I'm in a different but somewhat simialr boat as you. I've also been told I have OA by Rheumatologist but told by my surgeon I probably have Inflamatory Arthiritis. My GP also say sometimes OA is inflamatory and spreads to other joints not just staying in one joint. I have most pain and stiffness in my hips. I have just come back from an ultra sound scan that the Rheum asked for and I have no synovial changes in my hands but I do have changes in my feet. So far I've been seronegative to all tests and finally coming to the conclusion I 'just' have wear and tear arthritis at 36. If I do I can tell you now it really really hurts alot. Good luck on your journey to real answers!

  • Thanks tou you also stephpz, just wish there were more definitive ways of diagnosing these diseases, hopefully one day. Xx

  • I've had osteoarthritis badly since I was in my mid 40s. Degeneration can start really early. Yes it can cause real inflammation. My present bout has lasted 10 months. My chiropractor can show me ( just a wee press ) ouch! where all the spots are. Its beginning to settle now but I have to be so careful not to irrate the ' beast' .An unwary stretch, bend or lift can start a week of pain.

    I have e history of RA in the family so fingers crossed I don't get that as well.

    Good luck with your future diagnosis but if its OA there is little treatment apart from painkillers and treating your body carefully

  • I too relate to your feeling of frustration. I went on a self management for people with long term conditions a few years ago and a woman told me afterwards that she had burst into tears when a consultant told her that, having been diagnosed with RA in her early 20s, he felt she probably didn't have it. She had spent 15 years having joint replacements and taking drugs and telling people this was RA and somehow felt completeky cheated with this new opinion.

    For me I've resigned myself to the idea that my RA is nothing at all like what others here cope with. It's not easier or better because despite no erosion to date and very little visible swelling, something is making me ill and causing severe pain. My rheumatoid factor was 26 when I was diagnosed 3 and a half years ago but 15 when I was last tested 18 months ago after three years of 3 DMARDs and steroids.

    I now feel they could change their minds completely from two consultants confirming RA to saying it's Lupus, it's MS, it's PsA, it's AS, it's Sjogrens, it's Scleroderma - or even it's insanity - which is where I sometimes feel it might take me! No one says to me there's nothing wrong it's all in your head. No one has mentioned Fibro or CFS ever. But I constantly expect them to!

    So hang in there and please try to take comfort in the fact that you aren't on your own with this lack of certainty. It's not the doctors' fault but they often have no comprehension of just how much a diagnosis of RA or other autoimmune/ arthritic diseases turns our lives upside down. We try to rebuild accordingly and when they start shifting this fragile new scaffolding it makes us feel completely lost and very vulnerable.

    Hugs Twitchy xx

  • Hugs to you too twitchy, I have been reading yours posts and hope you too will get to the bottom of your problems xx

  • When I was first diagnosed Angela I had swelling of my feet & nowhere else. I had just turned 48 & as well as RD I was also diagnosed as having OA in my neck. This has since spread but believe me when I say before receiving adequate pain relief was as painful as unmedicated RD. I believe, or read his answer to your misdiagnosed question as correct, if it is "just" OA (I don't believe any disease capable of giving such pain can be preceded with just) it is within his remit to treat you, assuming that is what he was alluding to. I'm also 54 & now not only have OA in my neck but now also in my lower back, hips, knees & hands. It is still possible you have a form of RD, there are many, so I wouldn't be too quick to question the words of your new Rheumy or your previous one for that matter. He will prefer to have all his own imagery & examinations to work from, a new patient to him should be seen as if never treated & not just handed over from his predecesor. Personally I'm in favour of this, I don't think a Rheumy should work from anothers findings. I've had 4 in my 61/2 years & each at initial appointment requested their own tests to be done, including x rays etc prior to reviewing meds whether they needed amending or not.

    I hope you don't have to long a wait for his findings. Do let us know won't you. x

  • Thanks nomoreheels I am just hoping that I have not gone all these months with these meds when something else would have worked better. I agree with what you said about each new consultant getting his own picture. I will keep you posted but as usual it will probably be at least 2 months till I get MRI.xxx

  • I understand, it's been known before but I'm sure you know that & it's certainly no comfort. Hopefully that won't be the case but we can't turn back the clock now. Are you able to attend appointments at quick notice? If so it could be worth asking if there is a cancellation list your name could be added to for the MRI, worth a try at least if you can go with a days notice or so.

  • It does sound as if the consultant is taking you seriously as if he's ordered an MRI then he is is concerned to understand what's going on. And if you haven't responded well after 8 months of triple therapy then that's a good thing as it sounds as if you really do need a new treatment plan. The RF test isn't a very specific one, so it may well be that you have one of the many other variants of inflammatory disease. I hope that you don't have to wait too long.

    And as one of the many people who have osteoarthritis as well as RA I can confirm that they both hurt!

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