Presumed sero neg arthropathy

[ariel1973]

Hello

I am new here.

I had a fall in 2011 and never recovered, back and hip pain right side. Follow insidious bullying and fear which made me wonder about fibro as I read a link with this.

Then in late 2016, after a time of fatigue and worse pain at the injury sites, the injury pain seemed to improve for 2 months. I also had some thyroid replacement then. Then a new pain arrived - bilateral hips and SIJs, shoulders and sometimes foot/ankle. Intense and searing with stiffness. I reached a point of walking with a cane.

Initially, I was treated as PMR and steroids were great. But then rheumy said definitely not PMR, it was presumed sero neg arthropathy, inflammatory and said may become psoriatic arthritis or ankylosing spondylitis. Take methotrexate. I was relieved not to have fibro and that there was a treatment plan...

I showed letter to physio and she said it doesn't say Inflammatory and implied presumed sero neg arthropathy is nothing really. She treated me like a liar and I was sad because I am a bright professional and just desperate for answers.

Does anyone know what I have? Was 'presumed sero neg arthropathy' just a catch-all, fob-u-off diagnosis?

Am I truly back in the camp of "we just don't know?"

[AgedCrone]

I don't know what you have...but I'd definitely find a different physios & possibly a different rheumatologist.

You seem to have been given the run around over the last few years & be going round in circles.

If you have a sympathetic GP, ask for a referral,to a new Rheumy team, preferably at a different hospital.

To get things moving if you can bite the bullet and see someone privately you might get some answers more quickly. A private consultant's secretary will tell you how much a primary consultation will cost.

Hope you get some satisfaction soon.

[ITYFIALMCTT]

You need a different physiotherapist for sure - and maybe write up an account for whoever is clinical lead at her dept./clinic? I take it the phrasing of the letter is clear on the point so that it's straightforward for you to express that it's difficult to have full confidence in the physiotherapist's competence when dealing with you appropriately?

It does seem that it's genuinely difficult to fix a label to seronegative arthropathies that nonetheless have a clear presentation as an inflammatory arthritis. I'm beginning to wonder why the label matters in the face of clinical need unless it all comes down to ICD codes and justifications for funding.

Seronegative will be negative until such time (if ever) that it converts. It does seem that the seronegative ones need some research money tho' it's understandable the progressive or aggressive categories receive the most attention and funding. I have no idea of the relative numbers for the assorted categories and the various seronegative/seropositive subgroups (particularly as there must be a long lag time while the former converts or not).

None of which is helpful to you in your current predicament. I hope that this treatment plan works for you and brings you relief.

[gillianf]

Good morning, I am sorry to hear that you are in such a lot of pain and with the worry of not knowing what it is, this just makes it all worse. Stress is not good for any of these diseases. If it helps, I am RA sero-negative so understand your confusion. However, if you are on Methotrexate you are being treated in the same way that you would be if you were sero-positive and that means you are being treated. Does your rheumy have a proper team. If so see if you can get referred to a rheumy specific physio who would understand your situation. My rheumy physio is terrific but the first one I saw was a generalist and no- just like you she did not understand and made me feel a fraud.

Good luck - there is loads of stuff on the NRAS site regarding seronegative results so maybe that would help. Gill