Frustrating : Hi all I’m getting very frustrated I... - LUPUS UK

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Frustrating

Babyida profile image
5 Replies

Hi all I’m getting very frustrated I had a positive lupus detected blood result and lots of Simptoms but I’m still told I don’t have active lupus because my inflammation levels are normal. The following symptoms are

Joint pain mainly in my feet, hands and neck

Dry eyes

Just had terrible inflammation in my lips this is a first and wasn’t very nice

Always tired.

Had a knee scope last year which the found lots of inflamed tissue whitch had to be removed. To top it all Iv got to have more surgery on my spine in the neck at c6/7 for the second time. All this pain is getting me down no one is listening to me

Tracey xxx

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Babyida
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5 Replies
Roarah profile image
Roarah

Which tests were positive? Which were negative? Autoimmune diseases are diagnosed based on a whole picture bases. You need a combination of serum markers plus a number of certain symptoms to receive a diagnosis. Ana can often be low positive in healthy people and often negative in autoimmune patients so it is just an assisting tool in ruling in or out a diagnosis. Hang in there and I hope you can find a treatment for you symptoms soon.

Babyida profile image
Babyida in reply to Roarah

Lupus detected in my full blood count but my inflammation markers we normal but I have lots of symptoms

Roarah profile image
Roarah in reply to Babyida

Do you mean lupus anticoagulant( which is different than lupus) was found? I am not understanding what you mean when you say "lupus detected in my body". Did you test positive for every test in the lupus panel? There is no one blood test to " detect" lupus so diagnosis is criteria based So often at the discretion of a physician.

As I do not know your age, I hope you know I mean no judgement, but many of your symptoms can be wear and tear and sadly part of the normal aging process as well as parts of systemic decease. Treating the joints and spine with an orthopedic surgeon is often the best route to go if this is case.

KayHimm profile image
KayHimm

It is important to know which symptoms seem similar to lupus. It sounds like you are struggling with a lot of joint pain. You need an answer about what is causing that. As Roaroah said, it could be age-related arthritis or something else.

What lupus test was positive?

Hope you get answers soon.

K

Hi am so sorry your so unwell and feeling frustrated at the medical profession not listening and dragging this out. Am just wondering what you have been tested for and which blood tests you had done as Like you I am getting nowhere with my rheumatologist and I still don’t have a diagnosis. Let me know how you get on. Thanks. Elena.

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