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Sjogren's

Posted , 6 users are following.

Galapagos
Galapagos

I am concerned about my memory, 32 year old, diagnosed when I was 30. Mind goes blank, forget names of people I know. Mentioned this to my consultant and told it's just the tiredness. Mentioned it on another occasion and told I'd have to see my GP. Eventually went to my GP who said they'd never heard of SS causing memory issues but I've had people on the BSSA say they have the same thing. When I went to my GP I was presented with a sheet of paper with tests I felt were embarrassing, both me and my GP agreed I could quite easily pass these but if for any reason I didn't she'd have to refer me to a psychiatrist which she really didn't want to do. I agreed there's nothing wrong with my mental health but I would have thought I'd be referred for a MRI. Why do I get brushed aside - this condition is bad enough without being ignored as well. I'm just about holding onto my full time job. I even go light headed but no one seems to care. I'm now faced with going private, thankfully I have private healthcare through work but not everyone does. Please advise, many thanks.

1 like, 7 replies

7 Replies

  • samantha1951
    samantha1951

    Posted

    Hi,

    I get this too and it's embarrassing. Unfortunately I think it's just part of the syndrome - even if I have known tthe person for years their name escapes me.

    This disease is AWFULL.

    Regards

    Sammy.

  • rose77485
    rose77485 Galapagos

    Posted

    Sjogrens is a disorder attacking the moisture levels in your body. There are a few ways to treat it. You could take medications that repress the autoimmune response, and/or you can try to add moisture back in your body with healthy fats and additional fluid intake. Good fats and water are known to help with memory. You could do bost therapies for the best results. Good luck and I hope you feel better soon.
  • kate288a
    kate288a Galapagos

    Posted

    Hi Galapagos

    I am 33 and have Ss, raynauds and fibro. The symptoms you describe are exactly what happens to me. It's so embarrassing at our age.. I just have to laugh it off, but its very frustrating. Things that used to just roll off the tongue seem to get stuck and confused in my head...ive ben know to stop half way through a sentence and have no idea what i was talkibg about or what my point was (not something I've ever been known  to have a problem with smile But I have been told the term is 'brain fog' and that it's very common for any or all of these conditions. So please don't feel bad. Hope this makes you feel a bit better...almost part of a gang here aren't we! smile Kate

    • pam_87693
      pam_87693 kate288a

      Posted

      Yes all the same symptoms same diagnosis, I had the sicca symptoms at 20! It doesn't improve, my 4 sons laugh as I have to go through all their names as I can't always remember them, it got even more embarrassing when a new girlfriend/man friend came as I would call the friend by the previous ones name!!! I am 68 now and still do it, they just accept it as normal lol 
  • pam_87693
    pam_87693 Galapagos

    Posted

    Hello Galapagos you have Brain fog! Your not going mental, it is extremely common I am afraid, it's nothing to worry about, just part of Sjogren's Syndrome which most have, but as there is not much understood about Sjogren's isn't out there. This is a problem many of us who have Sjogren's face, many people who have Sjogren's just face a blank wall of knowledge my many health professionals yet after RA it is the most common AI rheumatologigical illness in the UK. I suggest you look up the BSSA who can give you any information you may like on Sjogren's. The BSSA don't do Facebook but if you would like to join British Sjögren's we are run by BSSA members. Just don't worry, it's not that you are going mad, Sjögren's makes your body just a little out of balance at times, this causes brain fog!
  • kitkatninja
    kitkatninja Galapagos

    Posted

    I have issues with my memory as well, with me it was a combination of Brain Fog and (after investigation) high blood pressure.  Under medication for both and well my memory has improved, I still suffer from it - just saying that you're not alone...
    • pam_87693
      pam_87693 kitkatninja

      Posted

      Hi Welcome to British Sjogren's! Ken has joined you to our FB group we are run by BSSA members for members of the BSSA and anyone suffering from Sjogren's and its attendant problems such as fibromyalgia, the sicca symptoms dry eyes, mouth, brain fog etc
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