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OJSRLS
03-15-2014, 08:40 AM
Still confused. Got latest labs back 2 of my markers show an inflamation, Sed rate slightly elevated, they said my ANCA was neg. but they sent it back out to retest. Nasal passages burning but no bloody discharge, Lungs feel like the upper bronchial tubes are constricted very short of air at times. Lower lung field are clear bilateraly with slight wheezing in the upper fields when exhaling. Medical Dr. put me on double C-pack of antibiotics. Still have no energy, chronic back stiffness, trouble sleeping. My ANCA test go from Pos. to Neg. back to Pos. now we think back to Neg.. Still will not give a confirmed diagnosis of Weg. Wish they could figure out what's going on. Anybody have any feedback?

renidrag
03-15-2014, 11:01 AM
We are all different with various treks to diagnosis. Are you seeing a rheumy who specializes in WG?
Dale

annekat
03-15-2014, 11:59 AM
My ANCA was only very slightly positive and I've heard of people with negative readings still being dx'ed with WG. If they could do a biopsy, either in the nasal area or the lungs or trachea, wherever they think the best bet is for finding active WG if it's there, then they would be closer to confirming a dx or not. Dale is right that you need someone experienced in WG, or to get your docs to consult with such a person. Here is the list recommended by the Vasculitis Foundation: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . Several people on here have been falsely told by inexperienced docs that they didn't have WG , when they actually did.

OJSRLS
03-15-2014, 12:39 PM
Thanks. I'm presently seeing a Rheumy in Des Moines IA not sure if he specializes in Weg. Family Dr. did referral after 1sr pos Anca.

OJSRLS
03-15-2014, 12:42 PM
Thanks I'm presently seeing Rheumy in Des Moines IA don't know if he specializes in Weg. Referred there by family Dr. after 1st pos. ANCA test.

Pete
03-15-2014, 02:50 PM
Have you been checked for subglottal or bronchial stenosis (narrowing of the airway)? This would require either a bronchoscopy or a CT scan.

Good luck!!

windchime
03-15-2014, 09:52 PM
Are you seeing a pulmonologist? Might be time to see one if not. They are the best ones to evaluate breathing issues. With that being said has your PCP ordered a CT of your lungs to see what else may be going on. X-rays are limited in what they show. Do they have you on an inhaler of any sort? Are they treating the shortness of breath and wheezing at all? Other than antibiotics it doesn't sound as if you are getting much attention from your docs. What does your Rheumy say? Sorry for all the questions, but it's easier to answer your questions with some recent background info.

OJSRLS
03-16-2014, 12:02 AM
Going to family MD next week and insist on upper airway CT. Thanks have a good weekend.

gwenllian111
03-22-2014, 06:18 PM
Even if your ANCA neg (which I am too!), it doesn't mean you don't have WG. It's not a definitive marker for dx. X