I have been having problems for a couple of years and was told in July I have sero-negative spondyloarthropathy possible psoriatic arthritis as I have some nail changes but no psoriasis. I am in a lot of pain and currently not able to work. I have not had any raised ESR/CRP (which I was told can happen in inflammatory arthritis) and the MRI showed some signs on my hand and historical inflammation of my sacroiliac joint. The rheumatologist prescribed sulfasalazine which I have been on for 3 months and was told to come back after 4months.
Up to this point I had been seen 3 times each time with about a 3 month gap and really felt overwhelmed by the diagnosis and lack of support.
At my last physio appointment I burst into tears (very unlike me) as it felt all too much with the mix of pain etc. and the side effects of the medication. The physio arranged for me to be seen sooner by a rheumatologist (it was a different doctor) and now feel even more confused. The appointment was mostly me asking a few questions and seeking a bit of reassurance about taking the medication and having no benefit just side effects. He arranged for some more blood test, said stay on the sulfasalazine and said come back in 6 months.
Today I received a copy of his letter to the GP which had a ? next to the diagnosis (?sero-negative arthritis ?psoriatic arthritis). Now I am worried and feel like they don't think it is inflammatory arthritis.
Is it usual for them to not know the diagnosis at this point? They seem really busy and not particularly interested in the fact I am off work and struggling to function. And 6 months until the next appointment seems a very long time. Should I be expecting more from my consultant?
I have tried to call his secretary to ask what the letter means but have left 2 messages and had no reply yet.
I would have gone to speak to my GP but she has just gone on maternity leave and I don't much feel like trying to explain it all to a locum GP.
Sorry this is so long but not sure what to do or who to turn to. I feel like I am getting a bad service from my rheumatology doctor but not sure if this is typical or not?
Any help gratefully received.