Hi All
My name is Jan and my story started over 10 years ago. I kept getting headaches which were gradually getting worse. I had been at my daughters for Christmas and on Boxing Day I had a humdinger of a headache. I took painkillers but I gradually felt worse. We came home on the Monday and between then and the Thursday I had either spoken to or seen a doctor regarding my head. It wasn't till the Thursday when I saw my own GP that he said to my husband that he wasn't sure what it was but if it was what he thought it was and he didn't start treatment that day then I would be blind by Saturday. Scary but as I was completely out of it I didn't care He started me on 50mg of Prednisolone that day. I went to bed when we got home as I was always tired whilst this was going on. At about 5 I woke with an almighty headache and Keith called the doctor. He came out and gave me an injection and I promptly went back to sleep again. I woke at about 8 and for the first time in days I felt well.
The next morning I woke and was still feeling well. The doctor rang and told Keith that he wanted me to see the Eye Department at Kettering General Hospital. We went and I had another blood test and went back to the eye department.
I had the test and promptly collapsed. I was then admitted as they had found out that I was diabetic and needed monitoring. This was New Years Eve. I spent a week in hospital and came home with an armful of meds.
Over the next few weeks I felt wobbly and when I had an Outpatients appointment the doctor wanted me to see a Rheumatologist.
On this appointment I had an extensive interview with a houseman and then taken to the Consultant. Again lots of questions and at the end of it came away with lots of blood tests to have and a 24 hour urine specimen to do. He also said that I could have Wegener's. The tests all came back negative so I was just monitored till the consultant retired and a new one took over. He said that he too thought that it could be Wegener's a d again just monitored me for a few months and then put me on an SOS appointment where I would ring him if I felt bad. After 2 years he discharged me without telling me!! I had started to get a cough which I couldn't shift and went back to my GP who referred me to Bedford Hospital Chest clinic. Again there I saw a multitude of doctors from different departments including Rheumatology but didn't get any further with a diagnosis.

On researching Wegener's on the internet I found a Rheumatologist by the name of David D'Cruz who is a world expert on Wegener's and was doing a study. It meant going to London to see him but my GP got the funding and I went to see him. After an hour's consultation with him he told me that my symptoms definitely suggested Wegener's and also Temporal Artritis. I came out of his rooms with a sheaf of forms for tests and had some on that day. I had a relapse last year with extreme pain in my right kidney but only had antibiotics to help it. This carried on for 2 months and apart from some residual aching in my kidney is now ok. He said that he will treat me when it rears it's ugly head again but my problem is that it can take 2 months for an appointment to see him.

At present I am reasonably well (as far as I can be with this) and try to do as much as I can in life. You can't just give in to it can you? I keep busy doing Patchwork & Quilting, Dressmaking, baking and gardening in our allotment and only give in when I have to. Hope that this helps the newbies.