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Could it be Behcet's Disease?

Discussion in 'Pain and Inflammation' started by merylg, Oct 14, 2012.

  1. merylg

    merylg Senior Member

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    Effective Treatment of Intestinal Behçet's Disease with Long-Term, Low-Dose Clarithromycin

    Hakozaki Y. · Mitani K. · Okada C. · Terada H. · Kobari S.

    Department of Internal Medicine, Japan Self Defense Forces Central Hospital, Tokyo, Japan
    Case Rep Gastroenterol 2013;7:122-126 (DOI:10.1159/000350320)
    http://www.karger.com/Article/Abstract/350320
     
  2. merylg

    merylg Senior Member

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  3. merylg

    merylg Senior Member

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  4. merylg

    merylg Senior Member

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  5. merylg

    merylg Senior Member

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  6. merylg

    merylg Senior Member

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  7. Allyson

    Allyson

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    Hi Alex,
    justy
    i have not the reference to hand but I am fairly sure frequent mouth ulcers is a symptom of EDS
    WIll post it when i find it again - a few otheres are looking into that too.

    ALso you mentioned in another post large hands and feet -well long limbs and tall stature and difficulty gaining weight you likely know can indicate Marfan's habitus - which my grandfather had. It is also strongly linked gebetically to EDS.

    Not sure if you have these too - Ted Danson's build comes to mind as typical picture of it - but also many models and supermodels have it as that is the current fashion look.

    best
    Ally
     
    merylg likes this.
  8. merylg

    merylg Senior Member

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    Allyson likes this.
  9. merylg

    merylg Senior Member

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  10. Allyson

    Allyson

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    merylg likes this.
  11. merylg

    merylg Senior Member

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  12. merylg

    merylg Senior Member

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  13. merylg

    merylg Senior Member

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  14. merylg

    merylg Senior Member

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  15. merylg

    merylg Senior Member

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    Interesting...
     
  16. Kati

    Kati Patient in training

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    Hi @merylg have you been diagnosed with Beçet's?
     
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  17. merylg

    merylg Senior Member

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    @Kati no I haven't. Can be a long path to a diagnosis. There is such a thing as "incomplete Behcet's" plus it is still the subject of research especially Neurobehcet's.

    What seems more important is not the name but that the patient gets listened to & gets to try available treatments that apply to their presenting symptoms.
     
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  18. erin

    erin Senior Member

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    Very interesting thread. I am getting BD tests on Tuesday. I hope I don't have this illness.
     
    merylg likes this.
  19. wheretolook

    wheretolook

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    Hi all,
    I came across this thread. I am a Middle Eastrin guy. We have a lot of cases of BD and its tested when we have those sysmptoms.

    I tested negative for HLA5, D27 by PCR.
    I also tested for pathology test was negative.

    But I am still facing like ME/CFS or HIV like virus.
     
  20. Dmitri

    Dmitri Senior Member

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    I was diagnosed with Behcet's earlier this week. The oral ulcers I get 5-10 times per year, usually one at a time, were a key part of it. It's a reason to celebrate after 20+ of years of not having a diagnosis.

    I was prescribed otezla and am currently trying low doses with no discernible effects so far. The physician said that if it works, it will most likely only treat the skin/mucosal symptoms and not the neurological ones. Should this fail, what other medications can I expect next? I'm guessing IVIG would be very difficult to get approved for this.
     
    crypt0cu1t likes this.

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