Feeling nervous : So I'm off to see the... - LUPUS UK

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Feeling nervous

Naomi82 profile image
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So I'm off to see the rheumatologist this afternoon. This is my first visit in 3 years. 3 years ago I was admitted onto a medical ward, because I was having a really bad flare, but I didn't know what it was. The rheumy then told me about Lupus, I had never heard of it, and that she was 90% sure I had it. However my ANA came back negative so the rheumy then discharged me, because I was feeling a lot better, saying that they think it might of been a viral infection. Since then I have buried my head in the sand trying to dismiss all my pains and symptoms. But its got to the point were I cant, and also I worried that I'm doing a lot of damage to my body. I have constant protein in my urine, but my bloods always say my kidney function is good, and I have hypertension so I'm on ramipril. I also have a lot of symptoms that seem typical of Lupus hair loss, sensitivity to sun, rash's, joint pain, brown ridges in my nails I could go on. However what if this is all in my head, and these are just other things that are not related to Lupus. I feel at a loss and worried about this app today. 

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Naomi82
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Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Naomi82,

Good luck with your appointment today. I hope that they are able to provide an explanation for your symptoms and offer a treatment plan to help alleviate them and put your mind at ease. Please let us know how you get on.

If you would like more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

Barnclown profile image
Barnclown

Wishing you all the best for your appt Naomi...please let us know how it's gone

🍀🍀🍀🍀 coco

Naomi82 profile image
Naomi82

Hi, the app went well, I think. She has given me an open app to come back when I think I am in a flare. She said however that it is unlikely to be Lupus with a neg ANA, but she has had me take the blood test again. I still had the same urine test results, plus two protein and I also had bilirubin in my sample too, whatever that is. She said that my last blood test showed a slight vitamin d deficiency, but this was found in a lot of people. Also when I told her that sunlight can cause me joint flare, she said that this was unusual. So all in all, I'm still as confused!! 

Barnclown profile image
Barnclown in reply to Naomi82

Thanks for this update.  It's good your rheumatologist has you on open appt.  has she given you a print out of your full blood test results?  Do you have printouts of previous bloods results?  Historic trends can be v revealing.  Even with neg ANA, there can be enough abnormal results to other lab tests to give a lupus-expert rheumy the confidence to start you on a basic antiinflammatory like daily hydroxychloroquine.  

With the symptoms you're describing + your rheumy's suspicions, I'm a bit surprised she hasn't suggested at least a trial of hydroxy.  My impression is that only the most immune dysfunction-experienced rheumatologists are prepared to embark on trial treatments for sero-negative patients...do you know how experienced your rheumy is in this area?  Perhaps a second opinion from of lupus clinic is on the cards?

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