Sure it's Sjogrens but tests say no

[newcastlelad]

Hi everyone this is a first time post but I have read this forum for a long time and it has helped me a lot.
I will try to explain my situation if you bare with me!

About 3 years ago I developed severe dry mouth and dry eyes and a lymphadenopathy and swollen salivary glands. I found it quite difficult to get much help out of doctors so this led me too carry out my own research. I found Sjogrens syndrome and could not believe how it matched my issues. For quite a while before the onset of these problems I had been having different physical issues which nobody could ever diagnose.

I became sure I had Sjogrens and decided to investigate my other issues in relation to Sjogrens to see if they were linked. After massive amounts of persuading doctors to help investigate my findings they started to run tests. It turns out with the help of the internet and this forum I have know been diagnosed with Hashimoto's and Antiphospholipid syndrome and know the professor who Antiphospholipid syndrome was named after Prof Hughes says Hashimoto's antiphospholipid syndrome and Sjogrens are the big 3 as he calls them as they are so often seen together but my journey with Sjogrens has been more difficult to prove.

The Sjogrens blood tests came back negative twice and I pushed for a lip biopsy thinking this would give me proof. I just found out the lip biopsy came back negative. I was so shocked as I have so many Sjogrens symptoms.

I have dry eyes and mouth. Been diagnosed with Blepharitis and conjunctivitis multiple times. I have almost constant post nasal drip. Painful joints and from time to time get random areas of inflammation. I have random Prostatitis time and time again which I have hear is very common in men with Sjogrens. Brain fog while I'm going through a flare up.
I have been told my salivary gland under ultrasound show inflammation indicative of Sjogrens syndrome.
I had a Schirmer test and was told I have very very dry eyes.
My mother has Sjogrens and Hashimoto's too and my family has a history of autoimmune disease.

So I was wondering why lip biopsy came back negative? I wasn't having a flare up at the time of the test could this have affected it? I'm only 34 could this be a reason for a negative test? Or have I not got Sjogrens?

The dr at the dental hospital investigating me has decided to see me every 6 months to keep check on my glands.

Thanks so much for any help you can provide.

[markt]

Have them test for other antibodies highly correlated with Sjs such as SP1 PSP CA4 CA6 etc.  Most only recognize Rho and La as sufficient to constitute a diagnosis, which leaves a significant amount of us "left out in the cold."

  Having Hashimoto's is also indicative your woes are due Autoimmune phenomenon.  Eg TPO antibodies.

Lastly. Go to John's Hopkins Sjs clinic if you truly desire a definitive diagnosis.... they recognize the big picture and varied presentations of Sjs.

[newcastlelad]

I'm in the UK so the John Hopkins center is not an option for me. Has anyone ever heard of someone presenting with the symptoms of Sjogrens syndrome but having no blood or lip biopsy positive to later down the line have them turn positive.

[Scottietottie]

Hi and welcome 

Are you actually in Newcastle - because I'm a stones throw away from there.

I was sent to a rheumatologist after being diagnosed with Hashimotos by an endocrinologist. Bloodwork was negative for Sjogrens. Lip biopsy also negative. This was 14 years ago. A rheumatologist at the Freeman said despite the bloodwork, I was on the autoimmune 'spectrum'. (I had an SjS diagnoses for 6 years by the time i saw him from a previous rheumatologist) Despite all the negative results - I can't get the diagnoses off my records. However - guess  what - 14 years later - my bloodwork has changed. They haven't got round to specifically testing for Sjogrens because   I already have the diagnosis. It showed very positive for autoimmune activity however.

The main thing is to get the symptoms you have treated - whatever the label. You can't get shot of the label - but there are things that help. Insist on getting that help!

Good luck. Take care . Scottie

[araminta]

Hi, I was born in Newcastle, though I'm now living in the south-west of England.

I've had Sjogrens type symptoms for at least five years, though I think there were minor signs of it much longer ago.   All my blood tests have been negative.   But blood tests can change, as Scottie points out.   Another member here (Confused) was recently told her blood test was negative, even though she had previously tested positive.   Personally I don't think it's right that doctors put so much emphasis on this type of test which has such variable results. 

I can't add much to what the others have said, but would echo Scottie's words about the main thing being to get the symptoms treated.