Can it be Wegeners if vascular blood tests are all normal?

[Aylasnan]

Rhinitis

Lung nodules

Coughing up blood

High rheumatoid factor

Normal ANCA

[Birdie]

Rhinitis

Lung nodules

Coughing up blood

High rheumatoid factor

Normal ANCA

Aylasnan,

Yes it absolutely can be WG. This illness is extremely difficult to diagnose because there is such a wide range of symptoms. One person is hardly effected and goes years without enough problems to cause very much concern, while another person (me) is in big trouble in a couple months. Also, there is no definative method of diagnosis which always works. Tissue biopsy with the signature granuloma is the most certain, and confirmed if c-ANCA is positive. Only a small percentage of people have a natural positive c-ANCA without one of a few conditions which cause it.

In my case the tissue went to a lab which specializes in this type of biopsy. The result came back with two, and only two possible causes of the granuloma. Even then they were almost 100% certain it was Wegeners, just from the exact type of granuloma in the tissue sample. High c-ANCA confirmed it beyond any doubt because the other possibility wouldn't cause it.

At this point you should relax and have a nice weekend. Do something you enjoy to pass the time until tuesday and don't be shy about going to the emergency room. Go immediately if things get any worse or if anything new pops up. All by itself, coughing up blood is enough reason to be in the hospital, especially when the problem has not been diagnosed. There are MANY different shots they could give you which would boost your metabolism enough to get you thru a few days. They could just start you on a mild dose of prednisone. Who knows what the ER docs might see as being good for you in the short term. You might be home in a few hours and doing much better. Hey, you could get lucky like me and have some dedicated genius doctor figure out exactly what's wrong.

In hindsight... if I had gone to the ER when in your situation they might have done something to slow the damage even without suspecting Wegeners, just because it was the correct treatment for the symptoms I was having.

[Aylasnan]

Thank you Birdie. I know I keep throwing things out there but I'm desperate for it not to be cancer. Having my first emotional day today :(

[Alysia]

Yes. It can be wg. What about joints or muscles pains ? Ears pains ? Gums bleeding ? Nose bleeding ? Red eyes ? Fatigue ?
In labs: hemoglobin less then normal ? Creatinine ? Crp ? Esr ?
Sometimes wg is smoldering and then labs are normal. But coughing blood sounds like a flare. Sorry.
Hang in there.
What treatment are you getting ?
My beautiful dr. Phil would have say now that you need to have an expert doc, wg doc. And he is right, of course.
Sorry if I missed something on other posts of you.

[Birdie]

Thank you Birdie. I know I keep throwing things out there but I'm desperate for it not to be cancer. Having my first emotional day today :(

We're betting on you being one of us. With the collection of symptoms you've got it's nearly guaranteed. So.... like me, since you match my story perfectly, the lung nodules won't be cancer and they won't be your main concern since they'll likely be gone in six months. Just ask yourself, what's the chance of having Wegeners and lung cancer? And they both showed up at the same time? Uhm... what's the chances of being hit by a green school bus AND lightning at the exact same time?

[Debbie C]

When I was first dxed it was by accident ..literally...I was coming back from a health food store ( of all places ) with my boyfriend when we got rear ended. We weren't hurt but decided to go get checked out at the hosp. When they did a ct scan of my chest it also showed a lot of nodules. The nurse came in a said they that I might have lung cancer and were notiifying my THEN pcp. He told them to not to admit me and I saw a pulmy after that and the rest is history,not cancer but wg.

[Birdie]

When I was first dxed it was by accident ..literally...I was coming back from a health food store ( of all places ) with my boyfriend when we got rear ended. We weren't hurt but decided to go get checked out at the hosp. When they did a ct scan of my chest it also showed a lot of nodules. The nurse came in a said they that I might have lung cancer and were notiifying my THEN pcp. He told them to not to admit me and I saw a pulmy after that and the rest is history,not cancer but wg.

Holy cow Debra!!! Who'd-a-thought that getting rear ended would be such a lucky event. And diagnosed before you even knew you were sick. Do you use a four leaf clover or rabbits foot?

[Aylasnan]

How scary for you!

[Aylasnan]

Do you have a post in " my story " Birdie? I like to read it please if so..

[Birdie]

Do you have a post in " my story " Birdie? I like to read it please if so..

Yes I do, here's the link: http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html

Hopefully enough humor to be not too boring.

[MikeG-2012]

Rhinitis

Lung nodules

Coughing up blood

High rheumatoid factor

Normal ANCA


My ANCA has been negative since my original diagnosis. When I was diagnosed, it was elevated, but not high by any means. Since then, I've had a flare up and always had a negative ANCA.

So ANCA is not the determining factor, and studies are starting to show that too.

[Birdie]

So ANCA is not the determining factor, and studies are starting to show that too.

Three years ago my original WG research indicated that between 20 and 50% have negative c-ANCA (depending on who's statistics you're reading). Also a small percentage of people are naturally positive. I found a web site with hundreds of case studies. Reading them confirmed that idea.

The case studies were the most revealing. Reading a few hundred of them allowed me to understand a lot about Wegeners AND doctors. Case after case was diagnosed as several something elses, for years before deciding on WG. The cases with positive c-ANCA were more likely to be diagnosed much sooner as WG, usually the first diagnosis. The moral being, if you're gonna have it then you better get some c-ANCA to go along with it or the medical comunity will try to call it something else. If a dog doesn't bark then call it a cat and feed it tuna.

[drz]

Some of us "lucky" ones do have a positive correlation with our ANCA scores and Weg symptoms. But many don't so it is not considered a valid indicator by itself.