Getting a diagnosis

Hello,

I'll try to keep this brief but you know how these things go!

I have a 'sort of' diagnosis of seronegative Rheumatoid Arthritis. My current rheumatologist feels this is the diagnosis that is the closest fit at the moment. I moved to my current hospital a year ago because I felt my previous consultant wasn't treating me aggressively enough and also the other hospital was difficult to get to. My previous rheum felt I was in the early stages of SLE due to symptoms. I won't list them all but my ESR is always elevated with a normal CRP which apparently is a classic sign. He said if I am not ANA positive within 10 years, he'll eat his hat! I'm kind-of kicking myself for changing clinics but my current rheum has bumped up my meds, so I have somewhat better symptom control. My only issue with her is that she isn't willing to re-test me for ANA and all the other SLE blood tests. I was last tested over a year ago. She said she won't treat me any differently and doesn't feel it's necessary to 'keep testing me' but some of my symptoms have got worse. I'm currently on MTX 20mg injection weekly. I've already tried plaquenil and it gave me terrible side effects.

At this point, I'm desperate and willing to pay to see a specialist in SLE. I'm just outside central London and will be planning to give the London Lupus Centre a call. If anyone could give me any advice/pointers, I'd be really appreciative. Thank you.

2 Replies

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  • Hun i would just say keep going back to your doctors and demand you need some answers,,do not give in,,if you are being told no,,wait a while go back and insist they do the tests,,you need to know!!Too many people are saying the same thing,,i think this cut backs in the NHS have alot to do with people being denied more appointments and the answers they need.Good luck.xx

  • I agree, keep fighting & if all else fails, ask for another Dr! Healing thoughts :0)

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