Well, apparently a mediastinal biopsy is not enough to positively rule sarcoidosis as the dx!!!!!!
I just saw the infectious disease doc and he informed me that since
sarcoidosis is a noncaseating granuloma disease that other things can
cause these same type of granulomas!
So, I have a script for
about 52 more vials of blood to be drawn and stool sample kits to be
done on three different days, which means three different trips to the
hospital lab to drop them off since they can not be refrigerated. He is
testing for every fungi, parasite, organism, infection and other creepy
crawlies that we don't want to be host to.
Hmmm, I guess its
good that we are making sure of the dx but I thought we had already
done that! I do not know what it means if I have any of the above said
creepy crawlies as he wanted to wait for test results to go over that.
This
testing is to be done on top of the urine test I am doing this weekend.
I get to pee in a jug for 24 hours, than mix it into little vials and
have UPS overnight it to some lab that is supposed to give me the low
down on my hormones and not even sure what else.
After the above
tests, I just really can't imagine what more they can test!! I am still
sticking to the sarcoidosis dx until I hear otherwise as the thought of
parasites and other unwanted guests making home in my body is just to
icky! Well,
maybe if it is a bug or fungus, they can finally kill the crap and be
done with it so I can feel better. Its been a long three years! Please
let these tests give a definitive answer, preferably one that is
treatable!
Hunny, if this comes out to be something bizzare, you should really consider contacting Discovery network, and talking to them about a mystery diagnosis segment. Your story just SCREAMS "tell me" You never know who might watch, and get help because of it.
Plus, it may be really theraputic!
*hugs* I hope they figure out what it is 99.99% sure and get you FIXED!!!
I'm actually sort of jealous because I would LOVE to be tested so thoroughly for every possible thing. It's hard to fight an invisible enemy! But I don't envy the hard time you have been having these 3 years. But it is good that you are being taken very seriously now and that your Docs are really, really trying to figure out what is going on with you. Good luck and please keep us updated.This guy is through! Thank God. Please tell him you want the Igenex Lyme test too! Please!
Pip
Hi Michele, in reading your signature I was just wondering, do you know if you've already been tested for APL syndrome, also known as Hughes Syndrome? I imagine you have but just in case, here are a couple links: http://en.wikipedia.org/wiki/Antiphospholipid_syndrome
http://www.hughes-syndrome.org/symptoms.htm
Hope they get to the bottom of your problems soon!
Andrea
It doesn't sound fun, but I agree with everyone, you are going to know for sure!!!! Good luck with everything. Does this guy see kids LOL?????Good Luck and hope you finally get some answers!
Keep us posted!Suzanne, Thanks! And yes, I do believe he does see kids!
Good luck finding your answers. Boy that is a lot of testing.I am so jealous, I want that doctor. Wow, you are one lucky patient to have someone taking such good care of you and trying to pin down if its pinworms - that was a joke. I would love to know what he suggests on how to get rid of them. Everybody has parasites. Keep us informed, leaky gutters like me are fascinated with knowing more about parasites. Thanks and good luck Cathy
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