Sjogrens, Hep2 cells and 'No man's land'!!

[Tryfan]

Hi, so far my story has been one of lots of symptoms for year and years, feelings of paranoia, guilt at being a 'malingerer' etc..  A few weeks ago, I finally got to see a Rheumatologist who diagnosed Sjogrens based on a positive Schirmer test (very dry in left eye but not so bad in right), Raynauds, hair loss, arthalgia and other clinical history.  He wrote a letter to my GP stating that I had Sjogrens and mentioned me taking Plaquenil.  However, he wanted to run further blood tests (last lot including ANA Elisa were negative).

I've just received another letter stating that my ANA, ENA and DNA were all negative again but that he was still waiting for Hep2 cell results.  Does anyone know what this means please?  He has noted that I have a mild malar rash which I thought was associated with Lupus only so is this what is being ruled out/or in?

When I was told about the Sjogrens, I started getting my head around it and found this site, bought a couple of books etc..  I just feel I can't move on yet.  Is there any way he has made a mistake do you think?  I have had a couple of fairly good days and I am imagining that I am imagining all this!  I feel like it is all a dream at present and I need something definite.  Funnily a positive result would, in some ways, be good now.  Has anyone else had negative results every time?  And, has anyone else got a mild malar rash but no diagnosis of Lupus? 

Thanks for your time, Tx

[Billydude]

My rhumatologist who wrote a book about Sjogrens called "A Body Out of Balance" says that nearly 50 per cent of Sjogrens people have negative blood work.  Its sometimes just a case of the symptoms preceeding the effect on the blood.   So,  you are not alone.   Some people like myself got a final confirmation via a lip biopsy which is more telling.   Those that already have positive blood work usually skip that step.   It is possible for you to have secondary Sjogrens to Lupus as well.
Good luck.
Steve

[Tryfan]

Thanks Steve.  Actually, 'A Body Out of Balance' is one of two books I bought!  I am finding it very helpful.  I suppose what I am confused about is the malar rash.  People seem to think that it is only associated with Lupus so I want to prepare myself if that's the case.

I've taken a bit of time and read a lot of posts on negative results and it does seem to be quite common.  I haven't had a lip biopsy...sounds painful to me.  Thanks again...lots of thinking and waiting to do, it seems..

T

[dbab]

It's definitely tough!  I have positive ANA and SSA AND a malar rash, SCLE rashes, and discoid rashes (all rashes confirmed by dermatologist), dry eye confirmed by schirmers, arthritis, (and a bunch of other stuff) and still only have a diagnosis of UCTD.  My doc suspects SLE/Sjogren's overlap and treats me but no concrete diagnosis.  Different docs have different criteria for giving a diagnosis. 

My mind works funny though, I keep telling myself as long as I don't have a diagnosis, then I may not be really sick... crazy thoughts I know