Hi From Oz

[Birdie]

Birdie - Yes, needle biopsy done with conscious sedation

Thanks for the recap, seems this is an appropriate time and place to give Mark a heads up on the subject. It's all scarey and has to be managed with wise choices, not emotion.

[drz]

Everything you have mentioned fits within the possibilities of Wg. The gold standard for diagnosis is biopsy. I think your doctors have thoroughly checked the woods for horses and should now test for a zebra.
(this is from a saying in medicine "When you hear hoofbeats in the forest , think horses , not zebras". It means that it is always best to check for the most obvious causes first before checking for more exotic causes of symptoms)

Use the "find a zebra" website to see what it kicks out for possible diagnosis. I used it several times and Wegs always came out one or two depending upon what symptoms I listed.

I know there are are very rare and not nice diseases or problems that often defy diagnosis. i was talking with a former co-worker today a (RN) who has some kind of auto immune disorder but not even Mayo could diagnose it with any certainty but the treatment is for the symptoms so she often uses Prednisone but has had bad reactions to it with side effects. She got serous cataracts after six weeks of moderate dosage and needed surgery.

[Mark76]

Interesting is there a link for that website?

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[debra]

Drz, hello. Hey Drz,I forgot about that sight from a few years back, can you post it, please, or tell me the name? I can't remember... Thanks in advance Drz! Nice seeing you, Drz..... Debra.

[drz]

Drz, hello. Hey Drz,I forgot about that sight from a few years back, can you post it, please, or tell me the name? I can't remember... Thanks in advance Drz! Nice seeing you, Drz..... Debra.

You can find it with a search here or google on internet.

[debra]

Drz, hi. Got it. Just curious, are we not supposed to mention links? I apologize if were not? Anyway, thanks Drz... Debra.

[annekat]

Drz, hi. Got it. Just curious, are we not supposed to mention links? I apologize if were not? Anyway, thanks Drz... Debra.

I think it's OK to mention links as long as we are not blatantly trying to sell something, or the link focuses too much on selling something. I don't think the link drz is referring to would be a problem that way.

[Mark76]

Its ok I found it thanks by good old google 😊. Im curious also if anyone with conductive hearing loss has had ventilation tubes inserted? Im keen to give that a go and possibly culture the fluid which I firmly still believe is a bacteria that is causing all this that hasn't responded to antibiotics. Although the lung nodules are suspicious.

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[annekat]

Its ok I found it thanks by good old google . Im curious also if anyone with conductive hearing loss has had ventilation tubes inserted? Im keen to give that a go and possibly culture the fluid which I firmly still believe is a bacteria that is causing all this that hasn't responded to antibiotics. Although the lung nodules are suspicious.

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My eardrums burst on their own before tubes could be inserted. The tubes are for drainage and release of pressure. My ear infection was also antibiotic resistant and my ENT was unable to get a culture to grow.... maybe he waited too long or there wasn't really much bacteria in there, since Wegs can mimic these things. However, Wegs had not been thought of as a possible cause, and the infection did clear up after using the big-gun antibiotic Levaquin. But this WAS, no doubt, the start of significant Wegener's activity in my body, and a big antibiotic-resistant ear infection at the beginning is not at all uncommon. DX was delayed while I went through 2.5 years of what appeared to be sinus infections, allergies, and both conductive and neurosensory hearing loss. BTW, the holes in the burst eardrums did heal quite nicely on their own, though since then, one of them has been destroyed by erosion from WG disease activity. So I'm getting by with one ear with a hearing aid, which hears quite well even though it started out to be the worse, nerve-damaged ear. What a weird disease.

[Mark76]

Weird indeed...yeah I just cant help but think theres still an infection going on but none of the drs really wants to listen to me.

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