Tomorrow I see my rheumatologist consultant after over 6 months on hydroxychloroquine and two depomedrone steroid injections. I have positive ANA and have had symptoms escalating for over 4 years. Been under neurologist and then rheumatologist to finally get to this point. The consultant was unwilling at my last appointment to give a definitive diagnosis but said the medication will be a diagnostic in itself. Therefore after having some relief Im hoping for the diagnosis I have been longing to hear. I don't want it but I do...does that make sense, I just need to know for certain what I am dealing with.
I am hopeful for tomorrow.
Sallyann x
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Sallmell
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Well seen the rheumatologist and he is still reluctant to diagnose lupus. He is considering putting me on methotrexate and is leaning more to palindromic arthritis?
Hi there. I’ve been there in terms of rheumatologists not wanting to commit to a diagnosis and also I’ve had Palindromic Arthritis which was misdiagnosed as RA. With +ANA and many symptoms I was finally rediagnosed with Sjögren’s. I think I probably also have UCTD overlapping as confirmed a few days ago by a Sjögren’s specialist. She said that the problem is that most general rheumatologists need us to fit neatly into boxes for them but some of us just don’t and I’m one such. It seems you probably are as well?
The main thing is to be taken seriously enough to be monitored and treated. Unless you have clear lung or kidney involvement already and anti dsDNA most rheumatologists won’t diagnose Lupus. X
Hang on in there sallyann... bit by bit you & your consultants will figure out your diagnostic piechart: certainly in my case you’re right about pos response to specific meds helping with diagnosis - one reason why i prefer never to start more than one new med at the same time
Hi Sallyann, I didn’t know anything about Palindromic Arthritis so have been having a read about it. It sounds a very unpleasant condition to live with. You are being taken seriously and many of these autoimmune conditions are very similar. They will monitor you on the medication so it’s possible they might review it again.
I went for years without getting much help before finally going to Chapel Allerton and being diagnosed with lupus, but as there is lung damage it was more obvious. Rheumatologists don’t seem to like giving a diagnosis of lupus.
Good luck I hope you see some improvement on the treatment.
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