Do I have Wegener's?

[Brooke]

I took my son to his pediatric pulmonologist today, he has asthma and allergies to dogs, this was a follow up appt.
I told his doctor I was diagnosed with Wegener's Disease. He said he was going to look into that and see if my son needs any blood work done.
I told him my ancas (all blood work for that matter), biopsies, and urine tests have all been negative for wegeners. I said my biopsy of my nose was so inflamed and still not "normal" and that is how they diagnosed me.
He doesn't think I have wegener's, but he is going to do some research. I don't think he really knows too much about it myself but we will see.

[JanW]

I'm confused -- they diagnosed you as having WG because of a biopsy of the nose that wasn't normal, but didn't clearly show the granulomas? Or, do you have granulomas but they aren't sure if it is caused by WG?

[Sangye]

Brooke, I'm sure this doc means well, but I suggest relying on a physician who really knows your case and is a Wegs specialist. I can't count how many docs have expressed their doubts along the way, even though they had insufficient info about my case and had no working knowledge of Wegs. It threw me for a loop quite often.

[Jack]

I'm with Sangye on this. I'm afraid your medic is no Wegener's specialist, in fact it sounds like they are just looking up the information on the web. You can't treat Wegener's like this! It does not follow the book!

You must understand how potentially dangerous this disease is. It can cause a great deal of permanent damage if not treated promptly and appropriately and every case is different. If left untreated it is fatal, so you need a positive diagnosis quickly from a specialist. I hope your doctor is right and you have some other problem.

Don't worry about your son contracting the same disease. It is almost unheard of for two people in the same family to have it.

[elephant]

Brooke that's why I am in the condition that I am in. I had this disease for over 30 years, Diagnosed July 2008. I think it is a good thing that your pulmonologist do some reasearch and get to know WG disease. Hope you son gets better. My son had asthma and severe allergies ( outdoor).

[Dumpy]

Brooke I had a lot of damage done because of a miissed diagnosis. When the first diagnosis was made they thought I had BOOP and put me on 40 mg Preds only which it helped my sinus to heal some for 5 months but when they started to get me off the preds is when my lungs kicked in and started all of the trouble. It dosen't take a lot of time for this BFF to cause a whole lot of damage. The first diagnosis was done by a my Pulmonologist and a expert Pulmonologist in New York that is suposed to be the EXPERT in Pulmonology but not Wegeners. She also agreeded on the final diagnosis of Wegs but the damage was already done. So we all nag but it is because we all know how dangerious this can be and none of us want it to get the upper hand on anyone else.

[Sangye]

How are you doing these days, Dumpy?

[Dumpy]

Sangye I have been doing pretty good thanks for asking. I am still off of the preds now for about 1 1/2 months now and everything seems to be doing pretty good. I had last Pulmonologist appointment last week and he said if everything is the same at my next appt. the first of March that he is going to start me off of the immuran. I keep my fingers crossed and I pray every day that our BFF stays quiet.

[Sangye]

Hey, that's terrific to hear! I'm confident that on Mar 1 we're going to get a good update about you!