Has anyone had normal markers but imaging showed signs of I nflammation? I’ve had joint pain, chest pain, finger swelling, gastro pain for almost a year now and am really down. Ultrasound scans showed fluid on my toes and my ankle. Apparently this is common in the general population, I find that hard to believe? I can’t get help and am really struggling, worried about my pain and possible IA. Can anyone recommend imaging they’ve had that showed inflammation? Like MRI?
Thank you 🙏 in advance.
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cappygal
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Hi - I had an Ultrasound for my feet where I have damage, cannot go on my tippy toes. I don’t get swelling. I have found massaging my feet with olive oil and essential oil of Oregano great at it penetrates as deep as the Synovial helping the pain and inflammation. As said this helps me. Do insist on an ultrasound you are entitled.
Thank you 🙏 I’m sorry to hear you have damage. I have had US scans of my feet and hands, two of my toes have fluid and one of my ankles too. But apparently that’s quite normal 🤷♀️
I am positive anti CCP but my CRP and ESR are normal, as well as negative RF. MRI showed extensive marrow swelling, tendon swelling, bursa swelling, etc in my foot and ankle. No doubt there is damage. Can't argue with proof of damage. I was glad I wasn't blown off and had appropriate testing that lead to RA dx after presenting to Ortho with terrible foot pain. I also had fatigue and a vasculitis rash on my legs at the time. US now will show fluid around tendons etc so I get cortisone injections. Hope you feel better soon.
Thanks wowzerbowzer. My CCP came back positive earlier last year but has been negative twice since. It has been impossible to get help. I feel like I’ve been fobbed off despite having had pain for almost a year now, selling and stiffness. I think I may have to go privately to get the help I need. I have been asking about MRI for months but got told they don’t think it’d be helpful. But anything that helps get me help for my discomfort and pain would be helpful. It’s caused me endless anxiety and stress 😥 Was it the Rheumatology team that ordered your MRI scan?
They do fob you off as the cost of an MRI can be about £1000 plus. Despite my feet pain and begging to have one , they let me have an Ultrasound instead. I had to insist. The results highlighted the damage already taken place, then they acted. It is disheartening when I have worked all my life paying taxes etc to be refused due to cost. Ironically I had a girl in my office, less in need. Not diagnosed with RA. Given an MRI scan with no issues. I found I had to mix both private and NHS to get anywhere. I still do now as they do not tell you what you are illegible for. I just spent £58 on my feet on Saturday, the chap said having RA I Should not be paying. So please do be persistent!
I do feel very fobbed off. Feel like you, that I’ve paid taxes yet they won’t even help to try to help out when I need it most. It’s a real battle. I’ve taken to diarising and photographing everything but think that I’m going to have to try the private route again, like you mention. It seems there’s no urgency with NHS rheumatology 😔
Wow, that is a lot for your feet 😳 Are you able to claim back in any way? x
I'm in the USA. My ortho is the one who ordered the MRI and when she got the results she said "I don't know what to do with you but send you to a rheumatologist because there are so many areas of damage and swelling and there is no explanation". A week later I was in Rheumatology getting 14 vials of blood drawn, etc. I had a $400 deductible I had to pay for the MRI-which is my total for the year. It was worth it. After that I just have doc co-pays for the visits. I did have to have 2 CT scans recently to rule out lymphoma and that cost $181. I have to have 2 iron infusions soon as I was just dx with iron deficiency anemia and malabsorption-most likely due from RA inflammation. That just floors me because my numbers don't show inflammation. I forgot to add that I had a +ANA also.
That is why it is so important to look at the person's presentation rather than just basing everything on a number. I am blessed with very attentive docs.
Thanks blodbergen. You’d think that given there are findings in ultrasound that the rheumatology team have to do further investigations if someone is in almost constant pain and has had swelling too? It sounds like the nuclear bone scan was the key imaging for getting you help. I would ask my team for this and the MRI too. Fed up of feeling fobbed off and suffering. Was it your rheumatologist who ordered the bone scan?
If you are having RA like symptoms (pain, swelling, stiffness tiredness, overheating etc), but no medical indicators like damage or factors you might like to look into and ask about Palindromic Rheumatism. It's basically a version of RA with no lasting signs and no damage.
Not sure if that will be what you have, but probably worth asking about, especially if it's getting to the point of "we can't find anything so you must be fine despite feeling anything but".
I have had redness, agonising stabbing and dull aching pain, awful chest discomfort, tightness & itching, swelling in my fingers and knees, stiffness, tiredness. I haven’t looked in to Palidromic Rheumatism but will certainly ask about that when I have my next appointment. Just feel fed up that my body has so many things going on yet the medics are sitting back and not even trying to look into other tests, suggest anything etc. I feel the urgency every day yet they show no urgency at all. There are always more tests they can do and I’m pushing constantly. Such a battle 😔 x
Hi BubbleMonkey Are your markers all normal too? Interested to hear about your symptoms. I did read somewhere that approx about 10%-13% of newly diagnosed RA patients have negative antibodies AND normal inflammatory markers. x
I was diagnosed with PR when I went to see a rheumy after a lot of being shut down by GP and negative tests. He checked
the tests the GP did and did the joint checks then said it was PR. He
explained that there are no ways to actually test for it so it's
difficult to diagnose and often gets ignored. Apparently it can turn
into RA, but it's more likely if you have the rheumatoid factor which I
don't. It doesn't cause damage and in between attacks/ flares things are
normal.
As far as I'm aware I have no markers or anything. Not that I've been tested for at least. I do have hashimoto's though (autoimmune hypothyroidism) so my immune system is know to be buggy.
My main symptoms are pain and that tired/ ill feeling along with some things like irritated skin. No swelling or stiffness (thank goodness). Basically every day I'll have short bouts of pain in pretty much any part of my body. I get "flares" which are a few weeks when the pains are more frequent, I'm more tired and generally achy and I tend to get a more constant ache or pain in my legs and arms (mostly on the right side oddly enough).
You can also get swelling or stiffness with it, but luckily I don't.
I'm not too aware of RA cos I don't have it, but I guess it's possible people start feeling it before it is detectable or that they can start with PR first.
Whatever the case I would definitely keep pushing for answers. Going private might be a good call if you can afford it. I've found it really helpful.
Thank you 🙏 BubbleMonkey My symptoms sound like yours. Pain flitting around and tiredness. Do you have dry eyes? I have had so much chest pain and discomfort.
What led to your hashimoto’s diagnosis? My TSH has been hypo and now borderline hyper 🤷♀️ x
I occasionally get itchy eyes, but that's about it. I'm not sure if it is something that can still be connected to the condition though. I already know I don't get all the potential symptoms.
My hashis diagnosis came about after the realisation I didn't have anywhere near as much energy as i should have at my age (teens at the time). I got blood tests for a bunch of stuff and my thyroid and vitD were low. My thyroid results also showed antibodies which makes it hashis. Not sure that word has ever actually been used though. After that it was just supplements (levothyroxine and vitD) and regular blood tests for levels.
I’m not surprised you have switched. It’s like they can’t use judgement to listen and do all the investigations needed 🤦♀️ Hope your new doctor is much better for you. x
I haven’t directly asked but they have said I don’t have classic symptoms but fibro seems to have so many symptoms associated with it. However I did have a fibro diagnosis many years ago.
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