Sad!!

**Brooke** · 01-30-2011, 11:42 AM

Drz, I wasn't assuming that because of the size of the town, he received improper or not the best care.

**Sangye** · 01-30-2011, 12:25 PM

Someone could be in Chicago and still receive improper care because they're not seeing a Wegs specialist. I was at Mayo Arizona and just because they didn't specialize in Wegs I was not getting the best advice.

**elephant** · 01-31-2011, 12:33 AM

Ditto to what Sangye stated, I was in one of the best Children's hospital in Chicago with a team of docs and they still couldn't figure out my diagnosis...which was Wegeners!

**freakyschizogirl** · 01-31-2011, 01:22 AM

Originally Posted by elephant

Ditto to what Sangye stated, I was in one of the best Children's hospital in Chicago with a team of docs and they still couldn't figure out my diagnosis...which was Wegeners!

I find that odd in this day and age...if you googled your symptoms, as i did before diagnosis, you'd know you could have a auto immune disease, mine even narrowed it down to Wegs and Lupus, not that i think doctors should be googling symptoms...

**Sangye** · 01-31-2011, 02:44 AM

Diagnosis looks so easy in retrospect! I can tell you that it is extremely difficult because you have to merge a patient's signs and symptoms with hundreds of diseases and conditions.

That was a big reason why I didn't go to an MD for the year preceding my dx. I only had severe joint pain for months and my blood work looked great. No inflammation, etc.. I had done a basic AI panel which was (-). Even when I developed severe fatigue and anemia it wasn't at all clear that it was an AI disease. What else can cause those symptoms? Lyme's Disease, rickettsial diseases, parasites, toxins, to name a few. And each of those is very difficult to pin down.

I think the only people who have an easy diagnosis are the ones who present with overt sinus, lung and kidney symptoms or signs like a perforated septum, subglottal stenosis, or saddle nose.

**JanW** · 01-31-2011, 03:11 AM

I definitely agree that the rarer the WG symptom, the more likely you are to get a quick diagnosis, once you are seen by the right doctor. Once a rheumy saw my nose, he made a tentative diagnsosis, and I was seen by an ENT a day later. Blood work confirmed positive c-anca within a week and I started treatment. It still took a while before what led me to doctors in the first place (severe foot pain) was correctly attributed to the disease.

**Jack** · 01-31-2011, 04:09 AM

When I put my initial symptoms into an online diagnosis program, Wegener's comes up as possibility No 196!

**Sangye** · 01-31-2011, 02:23 PM

LOL And, few people go to a doctor and list every single symptom. So many of our members have said, "I didn't mention my sinus troubles to Dr Z because he was a kidney doctor."