More testing
#322563 - 01/17/08 01:11 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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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 the 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!
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Taking it one day at a time.....
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Hang in there, Michele! At least it sounds like this doctor is REALLY trying to nail down whatever you've got! How are you feeling? Better?
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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As annoying as it is, it is reassuring that someone is trying hard to make sure you get the proper care! I'm very happy about that part!
Nothing like a little more poking and prodding, huh?
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Christine
Those who can do; those who want it done better teach.
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Are you seeing House now? Sounds like something he might do. He never is satisfied with the other doc's diagnosis. Not even his own. When does your episode air? Seriously, I imagine you must be getting very frustrated with this medical merry go round. Haven't you been diagnosed with RA, Crohn's, neuropathy and I can't remember what else.
My hairdresser's son had been to all sorts of pediactric GIs and given all kinds of invasive tests and inappropriate diagnoses. She took him to Mexico (she's from there and goes to visit her fam frequently) and the doc there said it was a parasite, gave him medication. He took it and is playing football now. No more problems. I'm not equating his case with yours, but hey if it is some little creature and they can politely or not so politely ask it to leave and you are better, that would be a good thing. Besides we all have little residents in our bodies. Some are good guys, some aren't. You just gotta hope the good guys outnumer the bad. I could get pretty philosophical about this so I better close. Oh, check out www.despair.com. Should give you a good laugh.
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Michele, I don't get on here much these days, but I wanted to let you know I was thinking you. That is a lot of pooping and peeing for tests! I hope they can either find something treatable, or go with the other diagnoses and get the ball rolling either way.
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I am glad he is being thorough but he is only looking at things from an infectious angle. He didn't bother to read my records I dropped off more than two weeks in advance of my appt or even read my history that I typed out for him, in an easy to digest form.
He basically said all I am going to do is make sure you have just regular sarcoidosis and that nothing else is causing the granuloma's associated with sarc. Ok. At least he is up front about what he is going to do and not do for me.
I dropped of the first of three stool samples last night and now have to wait for a bad tummy day with D as he said to be sure to give them a good sample from a bad day! LOL! I had the blood work done, not too bad, only 11 vials. Now, I wait.
I see the head guy at a big hospital in the area here a week from Monday to see what he says about the whole thing. I hope my blood work is back by than.
I am feeling better than I was. Apparently this disease can wax and wane so not sure if I am in a little bit of a remission. I mean, I have been battling this flare up of the uveitis in my eyes for over a month, my hair is still falling out, my hands are still swollen to the point that people ask me whats wrong with them, the fatigue and brain fog are daily battles, my joints still hurt, etc. But, my overall pain level is down so its all relative!
I have been REALLY trying to lose weight and I am getting very frustrated. I have a bridesmaid dress to fit into in a few months and unless I lose about 20 pounds its not going to happen. The bride picked out a style that doesn't come in plus sizes!
They are still trying to find the right psych meds for me. I just started cymbalta this week, I know it takes time but I am feeling pretty low-I hope it kicks in soon. There really isn't any other option as far as AD's go because of my heart condition. 
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Taking it one day at a time.....
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Re: More testing
#322716 - 01/19/08 04:47 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I wish you lots of luck with all the testing - especially the stool samples - ugh I hate them!!
Hugs, and I'm crossing my fingers and wavy my magic wand for you - whatever the outcome may be.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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michelle,
any news on the blood work? Just thinking about ya girlie, I hope they figure something out.
Deb 
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IBS-C gas, bloating and acid reflux
Babies is the plan for 2008!!Hope this IBS cooperates.
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Re: Not yet
#322919 - 01/22/08 08:39 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I figure I will give them another day or two and call them. I have my dr's appt with the sarcoid guy next Monday so I hope its all in by than! I just hate waiting for test results!
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Taking it one day at a time.....
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Michele,
I am very glad that they have finally found something they can treat you for. I know these last few years have been painful and very frustrating for you.
Honestly, you are the strongest person I have ever known. I am amazed at how much you have had to deal with and you still go to work every day and you never loose your hope and belief that the doctors will find what is wrong.
You are in my thoughts often and I pray for your recovery.
Lots of hugs,
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Janey
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