Hi,

My name is Suzanne and I was recently diagnosed on 13.12.18. It was a big surprise but in a way, a relief.

I am a type 1 diabetic and was diagnosed with the disease at the age of ten. Diabetes can be a pain in the ass but so can lots of things and on the whole, I have coped well with it. I've always made the diabetes fit in with my life, not the other way around.

The first symptom of Wegeners (GPA) for me was ear infections that would not clear up. My hearing was getting worse and worse in both ears and I had a horrible discharge. The ENT initially diagnosed me with CSOM with Cholesteatoma. I had an operation in November 20108 to remove the Cholesteatoma however, when I went back to see my ENT after the operation, he informed me that the biopsy taken from my ear showed dead tissue and possible signs of GPA. I already have only 22% kidney function which was thought to be due to my diabetes but now not so sure.
Further blood tests, Urine samples, Chest Xray were done. ANCA readings showed that GPA was the diagnoses. Thinking back, I had bad blood noses at Christmas time last year with bright red blood and clumps of blood. I also started to lose weight suddenly without trying. Didn't think much of it as I live in Darwin Australia and it's very hot at the moment so just thought I was eating less. The loss of hearing was bad enough, but then I had a pounding head and I was told to go to the hospital immediately.


I have now been put on antibiotics and steroids and I had the best sleep I have had in about 6months. My ears have dried up a bit, still can't hear well but no pounding head. I have a lot more energy. Finally some relief. Unfortunately the steroids throw raise my blood sugar levels which are usually pretty good. I now have to monitor even more closely so that's an added complication but on the whole, I feel better.


Just wanted to say Hi and try and gain more information as I know with my diabetes, having others that understand and can relate makes a huge difference, especially in the tough times. So glad I found this forum.



Suzanne