Hi all!.Within the past year I've been experiencing fatigue, burning muscle and joint aches, skin rashes, hives, hair loss, weight loss, easy bruising, dry mouth, dry eyes, swollen glands etc
I recently had an ANA test which came back positive at 1:320 titre with homogenous and speckled pattern. My ENA assay was negative however. I am wondering if ENA needs to be positive in order for the possibility of Lupus to be considered? Or are other factors also considered? Since I am symptomatic (badly) and have other autoimmune history (IBD)... I want to be assessed with full fairness at my upcoming Rheumatology appointment.
Oh and my Mean Platelet Volume was slightly low!
I would love your thoughts/ advice on possible further tests/steps and the diagnostic criteria and process in general.
Hello rosyovary. Have you been diagnosed with lupus? Your symptoms sound very similar to mine & I have Sjogrens but not lupus afaik. Has your anti SS Ro A & SS B La been tested? There is mixed connective tissue disease too where you have an overlap of the conditions.
Hi there!No diagnosis yet, but my GP is glad I'm talking to Rheum soon as he suspects! My SS a/b were negative...but I'm aware not everyone with these conditions has them. Guess I'm just worried they'll fob me off cause my ENA/ SS were negative despite that! But my symptoms are bad + ANA positive and interesting they match yours. Thanks for your insights. Can I ask how you were diagnosed/assessed if you don't mind?
In May 2021 I had an ANA test which came back positive at 1:320 titre with speckled pattern. Specific auto-antibody tests were negative.
Following first rheumy appointment 'Undifferentiated Connective Tissue Disease (UCTD)' was recorded as possibility in letter to GP.
Just had CT with contrast to look for diagnostic features.... or non auto-immune condition that could give rise to a positive ANA result.
I've had about a dozen different symptoms this summer, it has been a roller-coaster ride, as some instances have been so scary.
It is difficult being patient and waiting.
Using graph paper, I started to do weekly sheets with daily bars - coloured in to show activity - sleep, inside, outside, weather condition cloud / sun, and abbreviated symbols to note symptoms over time.
this is a great idea! I'll start keeping a record like this I think. Hopefully your investigations come back with some answers soon...I totally know what you mean, the symptoms are so scary and making me feel so ill, so waiting is so anxiety inducing and horrible! Keep me posted on your progress and good luck! What CT with contrast did you get- if you don't mind me asking? Thanks!
Hey,I feel for you and totally understand your confusion & need for answers.
I have been repeatedly positive for ANA, and have had fatigue, rashes (including a faint malar rash), hives, tingling across the face, muscle & joint pain and hair loss.
When it comes to specific autoimmune tests, I’ve tested positive for ACA which indicates scleroderma. However because my symptoms don’t match scleroderma, I’m trapped in limbo as the rheumatologist won’t consider anything else. That means I’m stuck trying to cope.
My advice would be to keep pushing for answers and don’t be fobbed off…
hi! sounds like you''re in a similar position! it's a tough one right? I've seen so many different varying accounts of how people got diagnosed with their autoimmune diseases and it seems it really depends on the doctor. Do you mind me asking what your titre was/ pattern for ANA? I haven't had ACA tested myself. Just hoping to be taken seriously and going to push not to be fobbed off! thanks
A lot of the comments above mirror my experience. After years of symptoms described above, I finally got referred to Guys by the local dermatologist, With their input and tests - many conditions were ruled out (allergies, photo-testing etc). They then also included a rheumatologist on the team - finally, with dermatology and rheumatology working together, I was diagnosed with Mixed Connective tissue disorder. I am on hydroxychloriquine and learning to manage my symptoms. Knowing what you are dealing with certainly helps. For years I was unwell, but never knowing what the triggers were for the bad episodes (eyes blowing up, rashes, fatigue, high inflamation etc). As suggested above, keeping a record (written and photos) helps - as you have something to show the consultant as evidence. Hope this helps.
It really does thank you! Glad you were finally diagnosed after so long! If you remember the particular tests they did on you in the end I'd really appreciate you sharing that! Thanks again
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