Feeling nervous

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. 

4 Replies

  • 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...

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

    🍀🍀🍀🍀 coco

  • 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!! 

  • 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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