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I have recently been diagnosed with Wegener's (I'm 32 and it has taken about 9 months to complete all tests etc).
I would like to know if there is anything else I can do to relieve the excruciating pain I experience in my nose, eyes, ears and jaw? Currently I have Codeine and oral morphine. I start immunosuppressive drugs in a few weeks (waiting for second CT and the results) and im currently on high dose steroids.
I also had an operation 3 months ago to rebuild my septum wth a silicone button inserted in to my nose, however, since then the infection has continued eating away at the inside of my nose and I've noticed the tissue and leftover cartillage behind the implant has now disappeared. Do I need a second operation to fix this?
I feel quite scared because my whole life I've never had worrying health issues - and I feel alone because nobody really understands this illness - including me!
Its financially crippled me and I've had to move home for the last year of my university course. If I couldnt' have moved home with my mum I dread to think what would have happened because I've been unable to work for most of this year.
Any advice greatly appreciated - as I'm starting to see my mood drop way below a manageable level.
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