Hi from Alabama!

[capo]

Hi everyone!

I have not been diagnosed yet, but have been given Wegeners as a possible diagnosis by my ENT.

I have had a sore in my nose for months now, it won't go away and bleeds all the time. I also have an upcoming appointment with a nephrologist in a week due to my Kidney function dropping way below normal. The swelling with that has been horrible! I've had sero-negative rheumatoid arthritis for about 8 years now, and have been an insulin dependent diabetic for 3 years now. As you can see, a lot of autoimmune illness in my history. For months I have had this horrible fatigue, and to say "fatigue" is an understatement! My ENT mentioned Wegener's because of the nose sore and kidney issues ocuring at the same time, along with the exhaustion, but it seems somewhat benign when compared to the stories I have read here. However, it seems to fit everything together. What diagnostic test do I ask for? Can Wegener's start as slowly as mine seems to be compared to most of the testimonials i have seen here? What health care professional treats this? I already see a Rheumatologist.

I would be more than grateful for any information you guys can give me, so a big THANK YOU in advance!!!

[Dirty Don]

Welcome capo, glad you found us tho your dx isn't for sure. You'll still get lots of good info, and, perhaps if necessary, you will be well prepared for the ride. Your symptoms are familiar for many of us. I never had kidney issues, but sinuses are wiped out. Others have endured worse, and less. You will meet them as you participate: asking any and all questions, sharing what you can, giving and needing emotional support...it's all here. The best dx test is a tissue biopsy from either the nasal or lung areas...or just a 'live' area. Some docs use the ANCA test to get indications of a possibility of WG. You need a WG experienced rheumy or the like. I'd take an ENT or pulmonologist experienced doc over a rheumy who has to play catch up or doesn't get it...hope you have a good one already. Also, the Vasculitis Org has names and numbers for other docs to consult with if needed. Search Vasculitis Org on here. Best to you and always have patience and lots of questions!!!

[drz]

The rheumatogloist will do a good screen for symptoms of Wegs with lab work (ANCA and inflammation markers and other tests too). If your symptoms and lab work suggest Wegs or GPA as it is now called they can confirm it with biopsy. The easiest and most reliable biopsy if your kidneys are affected is a kidney biopsy which a nephrologist would do. Do you have blood in you urine that shows up on lab work. It is not likely to be visible to naked eye but blood will show up on a dip stick test or urine analysis.

[Alysia]

Hi,
I can't say much but that yes, wg can start slowly, "smoldering" for years. this was my case I assume, and then it became acute and life risking.
I hope you will find soon what it is and I hope that it will be something easy to treat and to heal from. good luck and update us.
p.s. I wonder about your name ?

[capo]

Just found out from my rheumatologist that my blood test (ANCA) was negative. Should I ask for further testing? The ulcer in my nose is driving me crazy and if not for Lasix, I would be blown up like a water balloon!!! Not sure where to go from here. It's not that I want to have this disease, but I do want to know why my body is doing this! I've been a Type I diabetic for 3 years, no where near long enough for the type of kidney damage I seem to have. I just want a reason for all this so it can be treated appropriately! I see the Nephrologist next week. Any info or reccomendations would be greatly appreciated! Thank you!

[pberggren1]

Most diseases are not really understood. It is what it is.

[Dirty Don]

I do want to know why my body is doing this

Can't exactly remember which stage you're in capo, but you are. We ALL want to know these things, but the devil in our disease is that NO ONE really knows. As Phil said, it is what it is...we're making progress, but it's slow...as patients we need patience and fortitude...those go almost as far as the drugs, therapies, etc. that we take do. Keep at it - it's worth the fight!!

[drz]

Just found out from my rheumatologist that my blood test (ANCA) was negative. Should I ask for further testing? The ulcer in my nose is driving me crazy and if not for Lasix, I would be blown up like a water balloon!!! Not sure where to go from here. It's not that I want to have this disease, but I do want to know why my body is doing this! I've been a Type I diabetic for 3 years, no where near long enough for the type of kidney damage I seem to have. I just want a reason for all this so it can be treated appropriately! I see the Nephrologist next week. Any info or recommendations would be greatly appreciated! Thank you!

My guess is the kidney doctor will be able to sort out the cause of your kidney problems. Diabetes can be present and do much damage before it is recognized and diagnosed too. I had neuropathy a few months after my diabetes diagnosis and my endocrinologist said that usually take years to develop so he figured I had diabetes for several years before my diagnosis too. He might do a biopsy or other tests (CT scan, ultrasound etc) to sort it for you.