LUPUS UK
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Blood test

Hi

After having so many negative blood test I had positive c1q blood test back twice and I slightly raised ANA. I am relieved that I finally had result/answer but I just want to cry. Just makes everything more real if i am making any sense ???? I have so many symptoms and I am still not feeling great. The consultant has increased my immunesuppresant and she seems very great. I constantly have blood in my urine and the consultant wants to wait for a biopsy because there isn't any protein.

Is it going to get any easier? Am I going to feel better? Sorry I had a long day I feel I need someone who can understand to talk to. Xx

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Hello tulipano,

As you say it's a mixed feelings when a diagnosis gets clearer. At least you have a rheumy who seems to be thinking carefully about you. one of the continuing difficulties about a lupus-type diagnosis of course is that we have to learn to live with some level of uncertainty about how it is going to progress. Hope you will soon be feeling better in any case x

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Thank you xxx I am sorry for moaning. I have to learn to live with this monster. Xx

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Hi there! Hang in there. You need some time for yourself. But don't get too worried on the 'will it get any better' bits. It will. I was diagnosed with lupus nephritis stage IV almost 2 years ago, and I went into remission maybe in 2 months' time. It is definitely possible. I am still having a full time job and exercise regularly. You just have to stay positive, and continue doing the things you like whenever possible. Believe that lupus is not here to shortchange your life, but rather to remind you what is important, ie health, family and friends. Take care!

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Thank you xxx I am so pleased for you. Xx

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Congrats on finally getting some ‘validation’ on your blood work if nothing else. For so many of us with rare diseases and immunological issues blood work is always changing particularly if the patient receives infusions regularly. Consequently, it ends up almost like a celebration when blood results come back with problems. It’s crazy for sure, but for the longest time I used to think ‘wow, this is great!! Now they know I’m not crazy, and they can start treating me.’ Of course the sad part for some of us is that getting some answers is a relief in some ways, it may not solve anything. And I do mean ‘anything’. Digesting that reality is the hardest thing I ever had to face. Sorry, my intent is not to bring you down. I am in the minority for sure. I wish all of the very best for you in the future especially now that you have some ammunition with your test results and can’t be shrugged off very easily. Knowledge is truly our most powerful tool, well, that and the allies we have in each other. Best of everything to you.

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Yes, I felt very conflicted also....but at least I have a medical reason(not in my head) for feeling the way I did...medication has improved me quite a bit...

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