In process of possible DX and have Questions

[Morrison]

Thanks to everyone for your support. I have an appointment with a pulmonologist next week and I will update ASAP. I really appreciate the comments and support. I have had an EsR which was low, thank goodness but not the ANCA. It's like I have a mass sitting in my lungs and base of my neck/throat that has reduced my pulmononary respiration and sometimes gets irritated like asthma and then the difficulty swallowing. Couple this with my severe fatigue, fasiculations, and tinnitus.......??? Thanks again and I will update soon!

[annekat]

Thanks to everyone for your support. I have an appointment with a pulmonologist next week and I will update ASAP. I really appreciate the comments and support. I have had an EsR which was low, thank goodness but not the ANCA. It's like I have a mass sitting in my lungs and base of my neck/throat that has reduced my pulmononary respiration and sometimes gets irritated like asthma and then the difficulty swallowing. Couple this with my severe fatigue, fasiculations, and tinnitus.......??? Thanks again and I will update soon!

I wonder if you could have something like tracheal stenosis, a narrowing of the trachea that some people with Wegeners get, and I think sometimes it's further down in the bronchii. I don't have it myself, but I know there is a whole section on it in the archives... you'll see it on the main forum page if you scroll down. In fact, I'd recommend a lot of browsing and searching of past posts on the forum, in whatever areas you are most concerned about. I have learned most of what I know about Wegener's by doing that and reading the forum daily. Good luck with the pulmonologist and I hope he is more open than your family doc to finding out if Wegener's is what you have; he can order the necessary blood tests, biopsies, xrays, CT scans, etc. and I'm sure could also do a scope for possible stenosis.