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When people take the time to write responses I like to give feedback. Asking the doctors 'I don't feel right, what's wrong?' didn't work right so I've seen the wisdom in the biopsy recommendations. 'What is THIS?' is simply a harder question to ignore. I set up a consultation with an oral surgeon to explore the idea of removing and examining my faulty saliva gland. No loss, it's always plugged anyway. If that shows sarc I'll probably have justification to go straight to bronchoscopy biopsy instead of another CT scan. Thanks again for giving me new direction.

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Darrin, this is a journey we're all in together-- I'm so very glad that we're able to help.

Sincerely,

Tracie

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Wed, May 26, 2010 2:21:13 PMSubject: Thanks

When people take the time to write responses I like to give feedback. Asking the doctors 'I don't feel right, what's wrong?' didn't work right so I've seen the wisdom in the biopsy recommendations. 'What is THIS?' is simply a harder question to ignore. I set up a consultation with an oral surgeon to explore the idea of removing and examining my faulty saliva gland. No loss, it's always plugged anyway. If that shows sarc I'll probably have justification to go straight to bronchoscopy biopsy instead of another CT scan. Thanks again for giving me new direction.

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  • 2 weeks later...
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Darrin, I'm glad that your oral surgeon went right after the problem & took action. Let's hope the results, whatever they are, help you choose the next best step.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: gphx@...Date: Sat, 5 Jun 2010 11:44:01 -0700Subject: Thanks

I was at wits end and got some advice here and on other boards.

No longer sure what to do next people told me biopsies may be the

only thing left. Rather than recruit yet another 'ologist' I decided to

go see an oral surgeon to find out whether he'd biopsy a salivary

gland. To my surprise he agreed and insisted on biopsying more than

the gland I'd noticed as problematic.

They said I didn't salivate at all during the procedure and noted on

extraction the upper gland was oddly 'granular'. Results are yet to

come back and there's no guarantee they'll find Sjogrens or granulomas

even if they are there but if they are I'll have saved myself a whole

lot of money, time, and trouble. Should the result be positive I'll likely

get a lot less resistance from doctors getting the lung biopsy as well.

In any case I feel like things are moving again after being stuck with

no idea what to do. Thanks to those whose input helped me get past

that.

If it's positive though I'm going to be quite irritated with the doctor

who turned down my request for the gland biopsy insisting on five

figures worth of CTs and PETs at my expense instead. lol

Cheers,

Darrin

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

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