PET Scans

I would like to hear from people who have had PET scans. I am thinking of asking my doctor if I can have one. It seems to be the way of illuminating where actual granulomas may be.
Looking forward to some replies.

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Hi Krissy,

There is one in Queensland at Brisbane General.
There were 2 at one stage. There was one in Melbourne and one in S.A. There are now 12 all up in Oz. 8 of them are at major public teaching hospitals in capital cities. The other 4 are in private hands.

Pris

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I am curious about this as well b/c I have so many sypmtoms that suggest that I have a very widespread case of Sarcoidosis.
I am extremely claustrophobic however and wonder if it can be done while heavily sedated (unconcious).
I have had open MRI's and even that causes me to have a serious panic attack.
jobob

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I had a PET scan when they could not identify a "spot" in my lung from my x-ray. The results were inconclusive so they had to do an operative lung biopsy which did determine it was sarcoidosis. The "spot" did show up on the PET scan but wasn't verifiable as sarcoid or malignancy. Thank God for the biopsy!
Good luck!

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Just a clarification Jobob. The PET scan I had was in Huntsville, AL and did not involve an MRI.... Just wanted to clear that up. It did involve a CT scan which was a breeze, as I too am claustrophobic. As a matter of fact I have to go this coming Friday for an open MRI of my head for the sarcoid in my nasal passage... I am so tired of being sick....

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I know what you mean...I'm so sorry you're going through all of this....that we all are.
Thank you for clearing that up. I am able to tolerat a CT...now I don't have to panic before it even happens. LOL! Good luck on Friday...please keep me posted as to how you make out.
jobob (((HUG)))

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Thanks for that Pris, I might try for Brisbane General. I leave for Sydney tonight, but only for the fitness convention. I plan to have another trip to Sydney soon.
Cheers, Chris.

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I had a PET scan in 2006 and it was positive in my ascending colon. I was told by the GI, who did not order the test, but has just done a 'normal' colonoscopy a year prior, that my PET had been over read. I still don't know what is sitting there in my colon.

I had a gallium scan with half the dose of medication usually given and done 72 hours after, and that was negative.

I then a few weeks later had a CT which showed lung scarring, which the pulm felt was not severe enough to indicate sarc.

I would like a new PET now as it has been enough years, and I want to know what is causing the neuropathy, myopathy, lymphocytic infiltration of salivary glands, high ANAs etc. They have ruled out every disease besides sarc. I hope they biopsy my fingernail, recheck my salivary gland biopsy which was done many years before sarc was ever considered. Maybe they can biopsy the area that lit up in the first PET. With an ANA of greater than 1:1280 I can not imagine nothing lighting up.....that is significant inflammation.

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I've dropped the idea of a PET scan because my doc told me it will cost me around $900 non-claimable. It would be good to know where those nasty little granulomas are hiding, but not that nice.

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