hi

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  • I know i had symtoms for years before i was finally diagnosed it is a horrible disease, just hope u get things sorted out soon xxxxxxxx

  • aww em im sure you would, im laid in bed at the mo with a raging headache and stopping myself from puking. taken all painkillers and antisickness meds that i can. i am on some meds to try and help my behcets but it aint working yet :( and making me worse.

    ive had symptoms for yrs, even had a hystorectomy last yr as they said that would stop my migraines!! in the end i found it on google and its taken me 2 yrs to get an answer.

  • I find that u end up imune to the medication and it does not work as I continue to have flare ups every week with genital and mouth ulcers its so fustruating - A hope u feel better soon and your medication works my consulant has tried for infliximab after i rersearched it myself on the internet but unfortunatley the medical direcorate at my hospital was not agreed due to funding xxx

  • im on morphine too and its horrid :(

    im back at the maxio facial tomorrow morning and this will be the 1st time i hsve see them with no ulcers which will be a novelty. they tool loads of biopsies a few months ago that were so so painful.

    ive been in hos recently with meningitis, in with fits after severe temp (my temp often goes up to 41c). my crp count has been 190 ish for the last 3 yrs ive been really poorly too. ive only been on the meds for 3wks and im feeling very very ill from them so maybe i will have to change them but i just want to feel better now.

  • yeh i had to have colonoscopy, endoscopy, barium follow through, biopsies, pathergy test ect ect.

    alison that is bad!

  • I know I have hosp again on thurs and been havin bad side effects with the ciclosporin so think they will try me on something else, Al keep my fingers crossed for u and your son xx

  • Nicola hope all goes well for u tomorrow and that u start to feel better soon xx

  • I know had all those test done too that was a nightmare its just gd to know that u are not alone, I wish we had some sort of support group in scotland but there are only 11 of us with the disease and having to attend hosp every 2 weeks is a nightmare xxxxxx

  • hey em let nathan know am thinking of him and hope he get his diagnosis very soon take care and god bless xxxxx

  • Hi Nicola I'm in North Norfolk if this helps x