Has anyone ever heard?

[annekat]

Nothing in my lungs has required the removal of any lobes, thank goodness. I have scattered small cavitated lesions which were bleeding at the time of my dx but now have healed, though they are still there and have diminished my lung function. There is one, however, which was recently found in an xray to be slowly growing in size, so it needs to be kept an eye on.

I never had any problem getting tested for WG, but it should have happened a lot sooner. By the time I got a nasal biopsy, which proved it, my nose had collapsed, making it pretty obvious. I don't understand why insurance companies would be that stingy about testing when it could reduce their liability later on when someone gets even sicker from not being treated. And I don't get why docs are often so reluctant to consider WG or other vasculitis as a possibility. Sure, it is rare, but not so rare that it should be ignored or overlooked. My pulmonologist put me in the hospital overnight for testing, including a CT scan and bloodwork, because he thought I could have endocarditis, something that IV drug users get. I don't know if he believed me when I said I'd never used IV drugs. The hospital internist overseeing me suggested strongly that I could have WG, after looking at the CT scan. The pulmy still doubted it until the biopsy results from my ENT came in, which I had had to go and get on my own! Luckily my ENT knew my case well, and when he saw my saddle nose, he knew what it was and did a biopsy on the spot. He was very apologetic about not having considered Wegs earlier. I don't even know when I got the saddle nose, as I never noticed it until I got home from the overnight stay in the hospital! I have to wonder if the pulmy and internist saw it earlier and just didn't say anything, and maybe that's why the pulmy thought I was a drug user! It's all too weird.

[Tom]

Morning annekat, and all
My oncologist said he considered the possibility but explained the insurance! The RA that I saw the year before for swollen ankles and joints.
Since the swelling had gone down by the time I got in to see him, he left me with an open appointment which I used when I flared!
He told me also that this is why he was reluctant to treat me for rheumatoid arthritis and in part due to my cancer history and the drugs to treat RA could be toxic to me!
He was sure when I got the purpura and was apologetic but I told him that it was all good and I was ready to move on with treatment!
I went nearly 5 years making complaints of ailments and was ready to give up because I started to wonder if it was all in my head!
All I wanted was a name for what was ailing me, give me something to make it better and I will go away!
This vasculitis is a terrible thing to get because its so stealthy and hard to pin point!
By the time they did my kidney biopsy, and the lungs were in distress already, I lost nearly all my lung function within 2 weeks while waiting for results and then another week to determine my treatment!
Sinus' are still giving me fits, but he COPD I'm is the most of my problems. I am in remission as far as I know but the lungs are progressively getting worse and there is no stopping the progression but I can slow it I think by doing what I'm supposed to!
I really wish there was a marker for vasculitis! I wish the insurance companies at the time wasn't so determined to decide what test I can have and not have when there is a need to eliminate other issues!

[annekat]

Tom, (not Alaskatom, the other one), I'm sorry the system failed you so badly. We hear stories of delayed diagnoses all the time. My delay was only 2.5 years, while yours was around 5 years, it sounds like, and I've heard of even longer delays. Meanwhile people get sicker and sicker. We know there is misinformation and exaggeration on the internet, but how else are people supposed to figure out that they may have Wegs or a variety of other rare diseases that docs may easily overlook? I truly believe the internet and places like this forum must have saved some lives along the way.

[drz]

Tom, (not Alaskatom, the other one), I'm sorry the system failed you so badly. We hear stories of delayed diagnoses all the time. My delay was only 2.5 years, while yours was around 5 years, it sounds like, and I've heard of even longer delays. Meanwhile people get sicker and sicker. We know there is misinformation and exaggeration on the internet, but how else are people supposed to figure out that they may have Wegs or a variety of other rare diseases that docs may easily overlook? I truly believe the internet and places like this forum must have saved some lives along the way.

I wonder what the norm would be in getting a correct diagnosis after first symptoms. The problem is determining what were the first symptoms since Wegs mimics many other disorders. I believe my delay was 2-3 years but hard to really know since I had several sinus infections earlier so I am going from the start of mysterious roving joint pains and persistent nasal crusting and bleeding.

[Alias]

It is really hard to know, isn't it? My first serious symptoms (ear and nasal issues) started about six months before diagnosis, so I'm confident I would have been diagnosable then had someone thought to run the tests. However, I knew "something" had changed in my health profile at least six months before that. I went from being in good health to just feeling lousy all the time - nothing specific. At the time, I associated it with job stress. I wonder if there are any statistics about time from symptom onset until diagnosis. I guess they would be hard to compile, considering how small the data base would be and how non-specific the initial symptoms can be.

[Pete]

I was diagnosed about four weeks after the initial symptoms (ear infection that didn't respond to treatment and a chronic non-productive cough) appeared. I was in a teaching hospital, and I guess the docs there were more open to diagnosing a rare disease.

[MikeG-2012]

I was diagnosed about four weeks after the initial symptoms (ear infection that didn't respond to treatment and a chronic non-productive cough) appeared. I was in a teaching hospital, and I guess the docs there were more open to diagnosing a rare disease.

My journey was for about 5 years before diagnosis. I think 2007 is when my then ENT sent me to UW Madison to see a specialist, because he thought it was wegeners. The specialist that the university hospital said there wasn't enough tissue to biopsy from the nose that it wasn't possible to diagnose wegs. We all know now that nasal tissue rarely is positive for a diagnosis.

FFWD 3 years later and I started having bad sinus issues again. New GP doc, a rheumy, a dermatologist and an allergist were all telling me, "you aren't sick enough to have wegeners..." That rheumy even said that the only way to diagnose it was with a kidney biopsy. Probably wouldn't have found it that way either because I've never had kidney involvement. Consequently, I went to another health system when I needed to go to the ER because of the coughing up flecks of blood.

So, long story made long, my journey has been a long and frustrating one.

[Pete]

Sigh... I know that with respect to a quick diagnosis, I'm the exception to the rule.

[annekat]

Yep, you are lucky, Pete. I had the same initial symptoms, the unresponsive ear infection and lots of coughing, mostly unproductive at that point. The big ear infection seems to be the common denominator for a lot of us. By now, it would be nice to know that ENTs will routinely suspect WG when an adult with no history of ear infections suddenly has one and it is resistant to treatment! Wishful thinking, I guess.

I was lucky in that my nasal biopsy DID prove that I had WG (if they hadn't already deduced that by my saddle nose). I had lung involvement, too, so I guess a biopsy there would have been the next step, and a more difficult one for me, if my nasal biopsy had yielded no result. Pete, did you get a nasal or lung biopsy?

[Pete]

Yep, you are lucky, Pete. I had the same initial symptoms, the unresponsive ear infection and lots of coughing, mostly unproductive at that point. The big ear infection seems to be the common denominator for a lot of us. By now, it would be nice to know that ENTs will routinely suspect WG when an adult with no history of ear infections suddenly has one and it is resistant to treatment! Wishful thinking, I guess.

I was lucky in that my nasal biopsy DID prove that I had WG (if they hadn't already deduced that by my saddle nose). I had lung involvement, too, so I guess a biopsy there would have been the next step, and a more difficult one for me, if my nasal biopsy had yielded no result. Pete, did you get a nasal or lung biopsy?

I actually had both done back-to-back. The last thing I remember before fading into the twilight zone was telling the ENT and the pulmy that the one who got diagnosable tissue would get a steak dinner. The ENT won.