LUPUS UK
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Rheumatologist does he know what he's talking about

4 months after I got my ANApositive result my rheumatologist turns around and tells me even though you didn't test positive for Sjogren's disease I am 100% sure that's what you have I'm like😕 what?? is this even possible😒😒😒 he is not releasing me and sending me to a different rheumatologist at a University Hospital he said let's see if she could find something that I haven't and that leaves me with the confused lost and hopeless

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Yes he does and actually you should be happy that you have someone who is willing to diagnose without you ticking boxes! I was diagnosed with Sjogrens by litmus test in the eyes (bone dry after 5 minutes) and symptoms. Tests are stubbornly negative. I also have other conditions that often run with this disease or they with it!

I think you should embrace this approach as they obviously want to get to the bottom of everything. You cant get properly well or conditions controlled unless you get the whole picture. Good Luck.

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Hi Vickmt,

Unfortunately autoimmune diseases can be very complex and present differently in everyone making them very difficult to diagnose. This can sometimes mean it is not a quick process I'm afraid. It is positive to hear that your rheumatologist is referring you to another specialist rheumatologist for their input on your case - it sounds like they are very keen to find out what is causing your symptoms.

I know that it may seem like you are going in circles, but to me it sounds like you are progressing along towards finding some answers. Stick with it! Keep us updated with how you are getting on.

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You are very lucky to have hit upon a caring rheumy......a lot would not take the trouble to refer you on to another specialist.

On initial diagnosis take every specialist referral you are offered.....better that than no treatment & years of pain.

The time to feel Hopeless is when the doctor says " See you in a year"!

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I agree with others. I had to have a lip biopsy to confirm Sjögren’s despite all classic symptoms and positive ANA. No rheumatologist would previously entertain the idea of Sjögren’s or Lupus for me without the specific antibodies. I didn’t particularly like the idea of having a lip biopsy but was told that, without a positive result I wouldn’t be able to access any systemic treatments despite high inflammation markers, Hashimoto’s and a previous diagnoses of RA. It’s very positive that a rheumatologist is considering diagnosing Sjögren’s without the specific antibodies or a + lip biopsy result.

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If I cannot write how I feel in my heart what has helped, there is no sense writing. You have to be specific.

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Hi everyone I recently have a problem with my skin which tends to be itchy. This result in me scratching myself around that area on the affected limb frequently. I don't have any rash or anything bt the area turns black thereafter. I tried applying allergex bt no luck...

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