Quote:
Originally Posted by bluesfan
Mat
Thanks for getting back to us - had been wondering how you were getting on.
As bad as it may sound to say "well done" on getting your Sjogren's diagnosis, it was your perseverance, determination and conviction that you knew something was wrong, that got you there. I hope you feel even a small sense of victory at having taken on the NHS system (with all it's faults), and triumphed over all the naysayers you had to put up with along the way. If nothing else the experience will have given you great skills to manage your own health outcomes in the future.
I can empathize on the sense of relief at finally having a definitive diagnosis after so many years. My father had Sjogren's for many years and it's something I've been tested for (and will continue to be as I already have another auto-immune condition). I wish you all the best for the forthcoming tests and it's good to hear you're getting lots of support from others with the condition.
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Thanks Bluesfan - yes I absolutely do feel vindicated you are right! I wrote a post on Lupus UK forum headed "vindication by lip biopsy" and this expresses my sense of triumph I think.
However the reality is that primary Sjogren's (clinically diagnosed that is) is listed as a rare disease here in the UK and very under recognised and misunderstood compared to the other connective tissue diseases compared to the USA and other countries. The NHS SS page makes no mention of SFN/ PN or neuro symptoms or drug treatment options. There is, I have observed, a newly formed alliance of rare rheumatic diseases in the UK. It includes Lupus, Scleroderma and Vasculitis but no mention of primary Sjogren's.
It appears that even when it's properly recognised/ diagnosed doctors think only of the dryness of eyes, mouth and vagina. This seems to be the extent of what many understand and the neuro symptoms require a specialist SS expert. I say this with confidence now that three rheumatologists and two neurologists have failed to identify mine - even with the sicca listed on my sheet of diagnosed conditions. It took my ANA switching from negative to positive to get the new chap to turn blood hound for me. And sadly he's retiring from practice this month.
So if I'm to qualify for anything other than topical treatments only (and I know these are very important of course) then I need to feel confident in neurologist and rheumatologist working together to find answers and treat the disease at source. Way still to go but extremely grateful for your support as ever. It's taken me longer to come here and report my news to date because I really wanted to have something more to ask and say than just a rather euphoric splurge! X