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Debbie Hayward Story

I am a nurse in mental health not a computer person.

I only went on net to talk to other sufferers and THAT is proving difficult. Anyway on with my story. It started 10 years ago with a pulmonary embolism. At the time the docs put it down to clots being hereditary as my grandad died of one at an early age. Now my rheumy thinks it is the first sign of the Behcets.

After that I had no symptoms for 5 years until I was pregnant. I had an abscess in my groin. I gave birth and my symptoms came thick and fast. Ear infections, I had five, one after the other hospitalised each time.Then came perinal abscesses very painful and all surgically removed. Then terrible eye infections , after that came mouth and genital ulcers by the hundred.

Nobody connected these symptoms and I was shuffled all over the hospital treated and sent on my way. I was then sent to the genital urinary and they said I had herpes then they tested me for AIDS which was all I needed with a toddler. That was ruled out . By now my doctor thought it maybe more serious so I was referred to an immunologist.

He instantly diagnosed me with BD ran some tests and totally changed his diagnoses to chrons disease that was 2 years ago. I then had all tests for CD and after them they decided I had not got that. It was then decided I see a skin specialist who looking at the rash on my face and ulcers said he THOUGHT I had BD. He gave me methotrixate and prednisolone the methotrixata had no affect after four months he changed it to thalidomide that made me very ill in all sorts of ways and side affects put me in hospital.

There a doctor approached me about seeing a rheumy that was fixed up and beyond all doubt he definitely diagnosed me with BD. He put me on cyclosporin and to keep with the steroids.That was four weeks ago and last week I was in hospital again with another perianal abscess.

Without the steroids I cannot function if I miss one my ulcers return ten fold. My rheumy aim is to get me off them all together as among other side affect it gives me a terrible red face rash. If anyone wishes to e-mail me about anything I will try to help.