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New member -Not sure what to do now

453 Views 8 Replies 6 Participants Last post by  Mikiec
Hi my name is Michelle and I'm really looking for some guidance on my next move. I have recently been diagnosed as having had Kikuchi's disease which is inflammation of the lymphnodes. It is a self healing disease but it seems to have links with Lupus. Before I was diagnosed with Kikuchi's, I had been at my doctor with pains in my hands,knees and heels and have not had any joy in a diagnosis for this. The doctors are continually testing me for under active thyroid to try and explain hair loss (not severe but enough to make me worry) and fatigue. All these things point to Lupus.... What should I be asking my doctor for? I've read through a few of the posts on here and it seems that there are several people extremely frustrated with the doctors and the tests! Can anyone help or give me some advice on what to do?
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Hi Michelle

Welcome to the Forum. If you suspect you might have Lupus or some type of autoimmune disorder, the first test thats normally run is the ANA (Anti Nuclear Antibody) test. This is a simple blood test and your own doctor can order this. Although having a positive result doesnt mean you have Lupus, it can mean there is something autoimmune going on and will usually be enough to get you a referral to a Rheumatologist who can do some more specialised testing.

What kind of investigations have you had for the pains in your joints?

I had never heard of Kikuchi's disease before but I googled it. It seems very rare.

Let us know how you get on with your doctor
Take care for now
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