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Originally Posted by DavidHC
I'm not sure what you should say, but I can tell you that I have every single one of the symptoms you describe, not all at once, but at various times I have had or still do have them. And as of now, I have not been diagnosed with anything but SFN. No evidence of Sjogren's or anything else. I hope that's somewhat useful.
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DavidHC I remember following your posts a while ago and I'm sure you had a very elevated ESR? I wanted to tell you that this could be a very good indicator of Sjogren's if I'm right in what I've remembered. People with SS often have high inflammatory markers because of the systemic dehydration which causes blood to be thicker and higher in protein.
I also should say that I was only officially rediagnosed by a new rheum in a new hospital about five weeks ago. This was because he saw my high PV/ ESR and raised CRP and IgG and found that, once off all RA medications fully - my ANA had turned positive at last. So he asked me to have a lip biopsy and this turned up rude positive for each gland removed. Only in January of this year another rheum said I did not have a CT disease of any sort. End of.
So please never give up until you get proper abusers - in fact it may help you just to diagnose yourself with Sjogren's on the strength of your symptoms and high ESR (if I've remembered this correctly - if not then apologies). There are no treatments anyway apart from symptomatic ones - unless you get extraglandular symptoms or another CT disease or organ involvement.
I know quite a lot of people who have self diagnosed with a connective tissue disease because they have completely negative bloods. And when I read their symptoms I can't believe that they haven't been diagnosed and treated just on good faith. It seems there's a post code lottery regarding how Sjogren's is recognised and treated the world over. The UK. Is certainly not good for SS sufferers even if they are seropositive or meet the criteria for this disease as I do