An interesting link for those with with pSS related autonomic dysfunction

8 Replies

  • Hi Twitchytoes thanx for sharing, only read briefly as there's lots to read but will go back to it. Very interesting my friend. I hope you are well.😀

    Luv Jan xx

  • Thanks Jan - me too re reading it briefly. I'm sick in bed - think son has brought me something evil back from Melbourne. Feel just terrible! X

  • Oh I am sorry my friend, your in the right place. I do hope it passes quickly for you honey xx

  • Thanks Jan me too! X

  • Thanks Twitchytoes. Comprehensive testing. Don't some of us wish we could have had all those tests done?

    I wonder if the results may have been more divergent if the pSS patients recruited to the study were ones who were experiencing marked autonomic symptoms. Sounds like they were randomly selected patients as long as they met the diagnostic criteria for pSS.

    I had some of the tests but I always wish I had the Tilt Table test done when my Othostatic Tachycardia was so bad before starting Propanolol. The test (not mentioned here) which is on my 'wish list' - lol is the IENFD test which biopsies the intra epidermal nerve fibre density to assess for small fibre neuropathy. We do not do this test in Australia. It would be a good objective quantitative assessment for those suffering peripheral neuropathy due to small fibre damage.

  • I agree re testing. So many of my neuro problems are presumed now rather than thoroughly tested for. America still has a lot of money to throw at these highly expensive and specialist types of testing but the NHS is on its knees so no chance of getting most of these done for me.

    I did learn recently, and this confirmed, that Sjögren's is an autonomic disorder - never even realised that Sicca is a form of autonomic dysfunction - dim as that probably sounds!?

    Sorry if garbled - just been diagnosed with UTI and possible pancreatitis - feeling really 💩!

  • Hello TT.....are you managing ok on your own ? Have they found out whether it's UTI or pancreatitis ?

    Send us a signal.

  • Still feeling awful with tummy pain and nausea but no idea if it's a UTI or kidney infection or something else? Not pancreas apparently. My bloods were all okay yesterday and pee sample too. Young doctor I spoke to told me inflammation CRP was raised but it really wasn't for me.

    She admitted that had never heard of Sjögren's 🙄🤔. Non the wiser but am staying off Mycophenolate until antibiotics are finished. Son and his gf have come to stay to "look after" me lol - some chance! X