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Lots of weird stuff going on, would be so grateful for any direction or advice...

Posted , 7 users are following.

pamela02500
pamela02500

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1 like, 18 replies

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  • ClaudiaZ
    ClaudiaZ pamela02500

    Posted

    Hi Pamela,

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    I hope this helped.  Please reply if you need anything. I'm always down to lend a listening ear.

    - Claudia 

  • margaret22116
    margaret22116 pamela02500

    Posted

    hi Pamela, so sorry for your current struggles - I had a lot of this kind of symptom but others too. Definitely sounds auto immune and I wonder with the asthma element if anyone had considered Churg Strauss syndrome? 

    I have Behcet's which has similar symptoms but with ulceration being part of the symptoms too. If it would be of help to you, there is a great organisation called Vasculitis UK who are very supportive and helpful. 

    Lupus, Behcet's, Churg Strauss and Sjogren's all come under the umbrella term of Vasculitis. They are variations on a theme. I saw a rheumatologist for a time but they weren't terribly helpful to me and  got further by seeing an immunologist. I moved from there after issues over treatment and now see a brilliant vasculitis specialist in Cambridge. I feel for you and what you're suffering. 

    • JenniePoobah
      JenniePoobah margaret22116

      Posted

      I agree with Margaret 100%. Try allergy/immunology and/or rheumatology. I got so much further with my allergy/immunology guy.

      All my best, jen

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