Brian

[Brian Pennock]

Hi My name is Brian. I live on the west coast of Scotland and am in my 60's.

I am awaiting results at the moment but after many years of being unwell my specialist is as certain as he can be that I have Wagener's.
Because I have not yet been "officially diagnesed is it ok to ask a few questions?

[misskay]

ask away Brian... glad to have you with us. What tests has your doc run so far?

[renidrag]

There are many here that would like to hear your story. We are also sorry you have one, but this is the place to be. Many will be along shortly.
Dale

[Brian Pennock]

Hi Dale

In 2006 I lost the sight in my right eye following some nasty headaches and after also suffering from a sudden onset of arthritis and having sinus problems.
I was admitted to hospital and put on huge doses of steroid (presnisalone) I had been on this drug for about 6 months for supposed arthritis.
The doctor who admitted me mentioned that it could be Wegner's but the tests came back negative. (could this be because I was on such large doses of steroid?)
I was diagnosed with Giant Cell Artritis, a diagnosis that has since been cast aside not least of all because my sight did return. With Giant Cell it does'nt.
During the ensuing years the joint pain has increased and so to has the sinus problems (won't go into that one too much but I'm sure you know what I mean). Also the headaches have increased and for this reason I have been on quite a large dose of steroid. At one point they were considering that I had Lyme Disease!
During last summer I had a period where the headaches reduced as did the joint pains and I was able to cut down slowly on the steroids until I was on just 1mg per day.
When the headaches and joint pain started to return I was referred to a rheumatologist who immediately thought that I had an arterial inflamation of some sort. At this point I was on just 1mg of steroid.
He ran a series of blood tets and and I had a call from him last week to say that I had tested positive for antibidies he would associate with Wegener's Granulomatosis. I am awaiting an MRA scan and chest xray.
As I say the specialist cannot confirm the diagnosis until these tests have been completed but he seems fairly sure of what it is.
At the moment I do not know quite what to think as I am aware that Wegners is not pleaseant but then I think that hopefully they will be able treat it and maybe get on with my life, at the moment it's not much fun.

[renidrag]

Brian: Most will ask if you are seeing a specialist for Wegener's or will be referred to one upon diagnosis? Are you on Predisolone (Prednisone) across the pond alone with no other meds?

[Brian Pennock]

Yes just Prednisone. I am not seeing a specialist just specialising in Wegners, just a rheumatologist at the moment.

[Geoff]

Hi Brian,

I know exactly where you are coming from with regards to an incomplete diagnosis. Rather strangely I felt relieved when told I had Wegeners as I saw it as the first step in getting better. The correct medication will hopefully put you back on your feet and confident of the future. I will be 60 in a couple of months and am still able? to fit in a whole week at work. There is life after diagnosis!! Good Luck, keep in touch and make sure you get to see a Weg's specialist.

[NicShaf]

Hi Brian,
You have come to the right place. This site and the people on it are incredibly helpful.
I have to agree with Geoff, as hard as it was to hear I had WG, I was diagnosed in December, actually knowing what was wrong and knowing that I could start the healing process was a strange relief. I hope they can figure out what's going on and get your treatment started as soon as possible.
As far as I know, a Rheumatologist is the correct specialist you should be seeing for Wegener’s…someone will correct me if I’m wrong.
Best of luck!

[Sangye]

Not just any rheumatologist, but a rheumy who specializes in Wegs. There aren't too many in the world but it's a necessity with this disease.

[Hal]

I am happy to hear your vision returned though. Like you, I started to experience some sporadic "greying out" in my right eye in the days before I landed in the Emergency Room. It scared the living daylights out of me, and I was terrified I would be blind for life if I did not figure out why my body was shutting down like it was. I read somewhere recently that the Wegs blindness can be caused by the optic nerve being compressed by sinus inflammation. Up until then I have been assuming it was the vasculitis cutting off the blood supply to the nerve, much like what has happened in my legs and feet. Perhaps you relieve the sinus inflammation and it relieves the pressure on the optic nerve? Dunno, but I know everyone is different, but great that your vision returned!

Hang in there since hopefully now that they are diagnosing you, you can start proper treatments.

[drz]

Yes just Prednisone. I am not seeing a specialist just specialising in Wegners, just a rheumatologist at the moment.

Can he or she consult with one that has lots experience in treating Vasculitis like Wegener's disease? Most have a colleague they can call.