anyone ever had "Nephritic Syndrome".....? ( kidneys)

[Shannon's faith]

Your case sounds just like mine, although I have not seen a ENT yet for hearing since I am waiting on a confirmed diagnosis from my nephrologist. I will be having a biopsy in 2 weeks of my kidneys. Can you please tell me what your symptoms were before you were diagnosed? My kidneys are suppressed and based on other testing my doc is pretty sure that I have Wegener's.

[moyan]

Hi, only after finding this site, did I realize the stubborn sinucitis and plugged ear were signs of WG, found on bloodwork having affected the kidneays badly. I thought I was perfectly well.

[Shannon's faith]

My sinusis are plugged as well, and so is my ear. What is your prognosis?

[moyan]

No Weg specialist in BC Canada, so trying to figure out myself. My doc in charge knows less than I , so have to find one after 2 years that will ask vasculitis foundation docs how to proceed. I wish you all luck. Now tapering preds after 2 years!!!! so hope that will ease some discomfort.

[elephant]

Shannon are you on any medicines right now? You sound like me...ears clogged up, sinuses stuffy....I have left eye pain, some tingling to some fingers on/off, ect....you need to get started on something....

[Doug]

Thanks Sangye, I have come to understand that the doc I have had for 2 years is not capable of keeping track of what goes on with me! Hence I am looking for a more allround doc. Seeing a rheumo on Wed and have high hopes.

For those of us who had rheumatologists involved in our treatment early on, it's hard to believe anyone diagnosed with WG hasn't had a rheumatologist involved in their treatment early on! I hope you have a productive relationship with this new doctor since you feel your current doctor isn't serving your weggie needs and requirements, moyan. As you can read elsewhere in this forum, you truly have to have an active involvement in your care to assure you move forward toward health or, at worst, don't lose ground because of preventable error. When you have that right doctor on you team, you feel blessed! Believe it!

[Doug]

Moyan, I am not doing too bad. Can't wait to get my gallbladder out! I think I will feel better. Still have sinus issues, but not getting worse. Moyan, I too recently got a new Internal doctor, after my last doc told me people don't die from Gallbladder disease. My sister almost died ( her gallbladder was going to burst) and a family friend recently died of them same thing. So, that's when I decided it is time to find a different doctor.

Wow! Again the issue of taking an active role in your medical treatments and doctor selections proves out! When one's life can end because of an ignorant or inept doctor, it becomes much easier to say goodbye to a doctor and expand one's search for a doctor who understands the nature and seriousness of one's medical needs! Elephant, any doctor who tries to flamboozle you hasn't read this forum! Good for you for setting, once again, a good example for newbies on this forum.

[Doug]

No I did not tell the doctor, I was so furious...I almost blew my granuloma's! This was suppose to be a good doctor....but I think this doctor has issue's.....I think this particular doctor is burnt out and not interested in being a doctor. I live in a small town so I kinda know what's going on....so at that time is was best to keep my mouth shut and move on. Usually I have no problem telling a doctor how I feel, but I couldn't on this one.....

Will anyone mind if I tell elephant to kick ass?! Whoee! You do it, elephant! Sometimes the doctor gets the point without physical manipulations from your shoe. When you leave a doctor for another, it is nice to let the former doctor know why you need to leave, but the reality is weggies have more important things to accomplish than displays of social nicety toward a doctor who doesn't get it: weggies can die from ignorance, poor doctoring, indifference, things other than the primary disease of WG but more likely to occur because of the disease and its treatment.

[elephant]

Thanks Doung for the compliment. Did you have a great time with family? Good food?

[Doug]

My PCP (we use the term GP) is pleasant and willing to discuss symptoms and treatment at length, but more importantly he does what I ask. He knows little about Wegener's, but that does not matter.

That's been my personal experience with nurses and non-specialists involved in my health care, too, Jack. They have shown genuine interest in learning more about this disease, whether from the internet or my own experience with the disease. Much like we learn medical terms that help us discuss medical issues with our doctors, the nurses and non-specialists show they are willing to learn more about my circumstances so they can better serve my medical needs. I can't imagine the doctor or nurse or physician's assistant who can function in their professions without curiosity and genuine interest in oddities like WG among their patients. This forum, however, brings out horror tales where this level of professionalism doesn't exist, and how one of our own suffered needlessly.