Still waiting for diagnosis : Hi, had my 1st... - LUPUS UK

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Still waiting for diagnosis

Sarah777 profile image
7 Replies

Hi, had my 1st appointment with rheumatologist last week, I have positive ANA, fatigue, painful hands, feet, joints, nausea, headaches, the list goes on, I also have a red rash over my cheeks, nose and spreading to my brow. At my appointment I had X-rays of hands, feet & chest, bloods, BP & urine. She thinks it could possible be lupus but wants me to have biopsie of my facial skin to confirm, will I get results of bloods & xray? Not sure of next steps, I've also added a photo of my face to see if anyone thinks it looks like lupus? Thanks

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Sarah777
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misty14 profile image
misty14

Hi Sarah

Glad your Rheumy appt went so well. If you've elected to receive clinic letters at the hospital then once bloods and X-ray results known the Consultant will include copy of her letter to you and GP. If not she'll just send it to GP so in a fortnight's time you could see if GP has had it.

Your facial rash is like mine, I'm diagnosed with UCTD, good luck with skin biopsy. X

Sarah777 profile image
Sarah777 in reply tomisty14

Thank you for your reply and information, I really don't know much at all about this, can you tell me what UCTD is please? Thanks x

misty14 profile image
misty14 in reply toSarah777

Hi Sarah

UCTD is Undifferentiated Connective Tissue Disease . It's symptoms of several connective tissue illnesses like Lupus , RA and scleroderma, body can't make up it's mind which to be!. Treatment is the same and it has to be kept an eye on as symptoms can evolve. Hope that's helpful?. X

Freckle1000 profile image
Freckle1000

Hi Sarah,

Your facial rash has the same pattern as mine. I have Lupus.

Having said this, it doesn't nessesarly mean you have it.

I've seen plenty of people walking around with what looks like a dramatic lupus rash and they're perfectly healthy.

If you do end up with a Lupus diagnosis, just remember that even with the roughest of starts, when caught early & with the right treatment, Lupus often ends up being a very mild condition, where you can eventually get on with living a relatively normal life.

The medications they have these days are amazing.

x

Sarah777 profile image
Sarah777 in reply toFreckle1000

Thank you for your reply freckle, the waiting game for results is awful, im praying it's not lupus but if it is and I can get meds to make me feel 'normal' again then I will be happy x

nanleighh profile image
nanleighh

Very good advice. I would just add that a biopsy of the rash may not tell if it is Lupus. None of the tests done are absolutely conclusive unless you have the anti smith antibodies maybe. Good luck to you in your journey.

babssara profile image
babssara

Hi Nanleighh, what is anti smith antibodies plese. Thanks. Babs x

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