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The symptoms began with recurrent ear infections , rapid pulse rate, blocked nose , blocked ears and hearing loss now and then.
In October 2007 my health got worse I was extremely fatigued, I actually went totally deaf in both ears ,I had strawberry gums that were bleeding ,inflamed dry eyes ,no appetite and was losing a lot of weight . I also had a strange sensation in my scalp it felt like a soft babies scalp and I was getting terrible pains in my head . I spent two weeks in bed and diagnosed by gp with diabetes (don't have a clue where he got that from) and a chronic ear infection. My GP was completely useless and made me wait two weeks for blood tests and even then he insisted that it wasn't an emergency but my daughter managed to get the nurse taking the blood test to send it through as urgent. The results came back that afternoon and the imflammation levels were really high and I was sent to princess royal hospital in kent . It took about a week to diagnose at ENT after my sinus op they compared blood results and biopsy. I was then refered to my consultant put me on prednisolone then a week later I started the chemotherapy Intravenous but had a relapse in the march 08 and my consultant started me on cyclophosphamide tablets each day which worked for me. I am now on azathioprine and gradually reducing prednisolone. It has been a very stressful and expensive illness I havn't got all my hearing back and I have also lost the cartilage in the middle of my nose . I was wondering if anyone has had reconstructive surgery?
I was also wondering if anyone has managed to find a GP who understands wegeners ?
I hope to hear from anyone who wants to share their experience .
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