Newly diagnosed, too

[Sue]

Hi, I'm Sue and I live in Augusta, GA, USA. I'm 46 years old and, thanks to this site and the great information from everyone, finally starting to believe I'm not a hypochondriac. My GP had a 'lightbulb' moment last week - I knew there was a reason I kept believing in him - and after a moment or two of silence said 'I think I know what this is!'. I have been seeing him for about eight months or so - the time runs together when you're going back and forth so I'm not positive about timeline! - beginning with fluid retention in my ankles. Prior to that I have had high blood pressure, up to 189/98, which a previous GP put down to stress. Also my energy level has gone down the drain, which I hate. Over the last few months one side of my nose starting dripping for no reason which I kept thinking was a cold starting to happen, but didn't. I had a couple of UTIs over the last four months and blood started appearing in my urine together with kidney pain. Referred by GP to urologist who confirmed blood, did a couple of procedures and scared the crap out of me by coming in after second procedure and said 'I really think this is kidney cancer'. Last week red blotches appeared on my legs, overnight they swelled up and by midday I could hardly walk. Day before that my eye felt like someone was putting a hot nail through the back and it leaked for no reason.That's when my GP had his moment and said those words 'Wegener's Granulomatosis'. He told me it was very rare, he'd never treated anyone with it and didn't know much about it other than all the symptoms match. He immediately put me on prednisone, did chest xray and labs. Had already scheduled surgery/procedure today and urologist just called and said kidney ('filling defect') problem appears to have been resolved by prednisone. Ankle, knee and wrist joint pain pretty bad tonight for first time. GP left voicemail saying he and urologist spoke and referring me to nephrologist. I guess it all makes sense but I'm still not confident. Is seeing a nephrologist the best thing if kidney problem is resolved with medication? Should I refer myself to a rheumatologist or immunologist? Augusta has a teaching hospital but from the research I've done myself, no-one mentions WG as their speciality or that they have knowledge of it. Sorry to drop all this on first blog, but poor boyfriend needs a break from my whinging! I'm English, have 42 Australian relatives but live here in USA with no family and very few friends. Can't turn to family right now, as dad's lung cancer and lieukemia which were in remission, have both just come back - they have enough to worry about. Any advice or help, will be truly appreciated. Thanks.

[Rodger]

Hey Sue, I hope you are doing well. Since it did not appear you had any replies, I would strongly advise you to push for a rheumatology consult if it hasn't happened by now. Lot's of times, you need both the confirmation from you ANCA levels as well as a biopsy. I hope things are progressing and you are getting treatment.

[Mary Grace]

Hi Sue, I hope you're doing better. I live in Marietta, GA and all this is new to me also. I agree you need to see a Rheumatologist. I see a lung Dr and a Rheumatologist. It's my Rheumatologist that treats me, and my lung Dr orders all my CT Scans. There's a lot of good medicine for the teatment of Wegeners. I feel so blessed because I'm responding so well to my treatment. Listen to your body. You will get your energy back.

Good Luck, and God Bless, Mary

[andrew]

Hi Sue...very sorry or not replying earlier. I hope you're doing better and have seen your Rheumy by this time. Glad the Pred is hitting the spot to some degree. From what you say you may have kidney involvement so seeing a Neph to at least rule out any ongoing issues would be a good idea. I see an Immunologist ongoing every three months just to see how I'm going. You're probably good with the Rheumy and the Neph but keep the Immunologist in mind depending on the outcome of appointments. You'll find that no one (at least no one I've heard of) has WG as their speciality but despite that, there are many good docs with experience in trating it.

Please post again and let us know how you're doing.

42 relatives in Oz huh? Whereabouts?