Diagnosis

[Sunnyseas]

Hi all,

I’ve been suffering for weeks now, hands, feet, poor sleep but the only thing that showed up test wise was raised RF. I’ve just seen the consultant rheumatologist and he wasn’t sure if it was RA, suspects palindromic arthritis, an early form of RA. Will have to see if symptoms subside. Have any of you had a palindromic diagnosis?

[KittyJ]

If you put that into the search box and filter for NRAS then it will come up with past posts concerning that 😊

[BeckyMarshall]

All my blood tests came back negative. I waited months in pain with this hanging over me. I now know a negative blood test can just mean a diagnosis of seronegative RA. Too many doctors ( including some Rheumatologists I have experienced) see no problem if no positive blood test. Took me months to find a good Rheumatologist. You don’t have to accept the first thing you are told... I am not saying your Rheumatologist is wrong... but any specialist who dismisses RA from negative testing would concern me.

[janmary]

I had an initial diagnosis of seropositve palindromic RA because presentation was acute but not classical! But my consultant said its just one of the ways RA starts and treats it as such. My inflammation markers are never high, but I still get random joints flaring up as well as ‘matching’ ones. The literature says that palindromic does not cause joint damage, but that wasn’t do in my case. Hope all goes well for you

[Sunnyseas in reply to janmary]

Thanks for your reply. Sorry you had to wait so long to get your diagnosis. Take care, ss

[Brychni]

seronegative can also mean Psoriatic Arthritis which is almost identical to RA but affects finer joints nearer the nail as well as other joints. Apparently it is also travels around the body before settling into same joints on both sides. It also affects neck and lower spine, sacroiliac joint more than RA.

As for blood tests: they are, I have learned not definitive. After reading so many other personal stories of diagnosis I think I was lucky (or perhaps it was my insistence/persistence!) to have a special ultrasound scan which proved inflammation in my wrists. These scans are more expensive than blood tests! But it was this that confirmed an Undifferentiated Inflammatory Arthritis and I've been on hydroxychloroquine since 12 March. It's done nothing BTW! However, that's normal and it can take up to 6 months for there to be any effect.

Negative blood tests, I have been told, means that it's either a seronegative form such as PsA (although there is another test for this) but as it is often associated with psoriasis I suppose they look for that as another clue OR neg bloods can mean that indicators are just low and they tend to increase as the disease develops.

In my case, I think I have PsA and in addition to all the other dramas surrounding hydroxy. (shortages) I have now discovered that it is not usually prescribed for PsA but looking back I think I remember the rheumy nurse saying that if it didn't do much it would give a better indication of what type of Inflammatory Arthritis I have - a process of elimination. I wasn't worried about that initially because I didn't feel that bad! I was a bit dismissive about my diagnosis but - and I have written probably too many posts about this - my symptoms are developing rapidly and are more widespread and there are really bad days pain wise and I wonder how bad it will get by the time hydroxyc. starts to take effect and if it is PsA then hydroxyc. may not even be the right drug.

I don't have psoriasis but some of my aches and pains started in childhood and apparently PsA can be more obvious in childhood than RA but more relevant is that psoriasis is in my family.

I do go on - don't I?!😁

[Sunnyseas in reply to Brychni]

Thanks for your reply Brychni. I hope the hydroxychloroquine does help soon or perhaps ask to try an alternative. It seems like a waiting game every step of the way 😕, take care, ss

[stiff19]

Hi

Did they give you any medication?

I was diagnosed with palindromic rheumatism , when started suffering with hands feet knees and feeling awful , I was given hydroxychloroquine. They helped somewhat but second rheumy took diagnosis away and medication and said was down to fibromyalgia. Ever since I’ve suffered more problems and more severe.

I’m left on a journey of finding out what’s wrong two years later. I believe palindromic can affect systemically too 🤷‍♀️ Only what I’ve read, I have had horrible rheumy experience, and was told it’s possibly palindromic, told to google it and take tablets.

All my bloods were said to be normal and scans etc but still to date persistent symptoms. Not helpful to be told you have this , google it , not from specialist anyway, google it and see if it’s relevant, but be warned not to try diagnosing yourself so much seems fitting if you do this, leave diagnosis to specialists but persist in finding help if symptoms continue to plague you.

Best wishes and good luck hope you get some answers 🙏

[Sunnyseas in reply to stiff19]

Hello Stiff19, thanks for your message. It sounds very similar to my symptoms. I’m sorry your diagnosis has not been clear either. Are you persisting in finding answers for yourself? Take care, ss

[stiff19 in reply to Sunnyseas]

Hi yes I am but it’s a long road and am now seeing neurology but feel absolutely dismissed by rheumatologists and fear if neurology have no answers back to square one but all the time I suffer whatever I need answers and help if can get. I sincerely hope your rheumy is onto this for you, and jot down your symptoms or keep a diary that may help you and them.

Take care 🙏