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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Susie2! So funny!
#323258 - 01/26/08 03:48 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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OMG, I almost wet my pants, laughing. http://www.despair.com./viewall.html
~nelly~ 
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I just saw Medical Mysteries with sarcoidosis as the mystery disease.  The lady who had it was using an experimental drug in a test trial, but the drug hadn't been approved yet. Maybe you can look for test trials?
{{{{HUGS}}}} Michele! I'm thinking of you.
~nelly~
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Really??? I wonder what drug?? The only trials I can find are for the anti TNF drugs like enbrel, humira and remicaid. I have been on humira for over 1.5 years. I went to all sorts of govt testing sites and stuff looking for clinical trials.
I actually see the head sarcoidosis doc at a big hospital here in Detroit at 3pm today. Wish me luck!
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Taking it one day at a time.....
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Thanks Janey!! I appreciate the kind words!
How is the job going??
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Taking it one day at a time.....
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Good luck Michele! I don't post much lately but you are always in my thoughts!
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I wish you luck and am sending lots of gentle hugs your way. I hope there are treatments that help the problem and don't cause other problems.
Susie
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I hope your appt. went well. Let us know. Hopefully the specialist can get you on the right meds.
Even though you're just starting to make progress you sound a lot better. It sounds like your hope is back and you have a better outlook. That makes a world of difference. Hopefully things continue to get better and better!
Is the pain decreasing? Are you still able to do some exercise? That alone can be a real mood booster. Keep up the good work!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Hi Michele....{{{{hugs}}}}
I'm so sorry I haven't been on the forums much to be current on all you have gone through lately. But from reading this post of yours, sounds like you are going through a terrible and trying time right now. I'll keep you in my prayers and hope all goes well. Just stay strong and keep smiling even though it may seem hard to do at times. I've posted this favorite quote of mine several times, but I'll post it here again in hopes it will bring you some encouragement and strength....
"When you come to the edge of all the light you know, and are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: There will be something solid to stand on, or you will be taught how to fly." ~Barbara J. Winter
Keep flying, Michele! {{{hugs}}}
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First, I want to say thank you to all you have responded! The support means a lot to me!
The doctor was wonderful! He was caring and treated me like a real person and was compassionate. He took the time to read my chart files and really listen to me.
He is the head sarcoid doc in the pulmonary clinic at a large hospital in Detroit. Apparently the top two sarcoid dr's are from Ohio and California. He stays in contact with them to keep up on the new treatments and such.
Remicade is a drug that has been around for a few years, about 8 I think and is primarily used in Crohn's and just recently in rheumatoid arthritis. There have been some very promising studies in its use for sarcoid. This doc was skeptical so he went to Ohio to talk with this other colleague who has been using it to treat his sarcoid patients.
This other doctor had him go talk to all of his patients that day to get there responses from the drug and almost all of them said it was wonderful and has greatly improved there lives! So, my doc decided to give it a try and has had great luck with it as well.
He confirmed that all my symptoms that I have had for the last 3 years or so have been from the sarc. He was amazed at the amount of swelling I still have even after I told him that the swelling in my joints and hands is down. He said the heart problems I have been having are from the sarc as well and is setting me up with an appt at there cardiac unit.
It will be a few weeks before I am able to begin treatment as they have to get prior authorization from the insurance as its very expensive. From my understanding, I will go for my first infusion, than again in 2 weeks, than once a month from there. The infusions are done at the hospital and can take several hours to complete.
This is a big gun drug and can have some serious side effects but I am hopeful that it can give me back some quality of life!
I feel as though a weight has been lifted from me now that I have a doctor who is going to help me. I am nervous about the treatments, what if I have a reaction to them or they don't work but I am also very excited. Please keep your fingers crossed this is what I have been looking for and will help me get well!
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Taking it one day at a time.....
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Sounds like this new doc is wonderful and will get you on the right track for treatment. I wish you well and will keep you in my prayers. {{{hugs}}}
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This sounds so promising, Michele. I'll definitely keep my fingers - and toes - crossed that this works as well for you as it has for others.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Fingers crossed this works out well for you and you feel good again!
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Fingers and toes are crossed! This doctor sounds great and professional. So glad you've found someone who not only listens but is taking the time to learn about you and your medical history. Hugs!
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Oh Michele, I'm so happy for you. I'm glad that you're feeling some relief and that you have a supportive doctor. That's what we've all been hoping for, for you.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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I'm so happy for you, Michele! I do hope this new drug will work. You've suffered way way too long. Sounds like this new doc is just wonderful, too. Sending lots of hugs and luck your way! Keep us posted!
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~~~~~~~~~~~~~~~~~~~~~~~~
Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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IBS-A...I can never make up my mind
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What wonderful news, Michele! (I mean, well, you know what I mean. )
Keep us posted! I hope this gives you some quality of life! You certainly deserve it!
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Christine
Those who can do; those who want it done better teach.
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I hope and pray that this treatment is quickly approved by your insurance company, is well tolerated by your body and gives you significant improvement. You've been a real trouper. It's also nice that this new doc is caring, compassionate and seemingly competent.
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That is great news, Michele!!! I'm so glad you finally got a good Dr. that will actually listen to you. A Dr. like that is hard to find. Good luck with the upcoming treatments. Hopefully your body will respond well and you'll be feeling better soon!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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I a very excited to get started. I figure I will give the a week than just give them a quick call to see how the process is moving along. I don't want to be a bother but I also want to make sure its all progressing as it should!
I am a little nervous about the side effects. I need to stop reading the Internet!! I am just telling myself the treatment will work and the side effects will be tolerable!!!
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Taking it one day at a time.....
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Are you still pinching yourself to see if you are awake? Answers? Real answers? Really???? I'm so happy you have some concrete answers!!! I wish you all the best with the treatments!!
HUGS!!
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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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Hi Michele
I'm so relieved for your having found this diagnosis and yet concerned for your next steps for treatment! In any case, I'm so glad you have some answers and a path to set out on for healing AND a responsive doctor after all the unanswered questions and unhelpful doctors, etc. I'll be thinking of you and sending you healing thoughts as you begin this treatment.
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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Thanks Toady! Yes, I am still in shock. I am trying to stay positive, its only been a couple of days but each day that goes by that I don't hear anything, I get worried they forgot about me. I know its a BIG hospital and it takes time to set up appts and get authorizations, I guess I am just worried that I will be let down again.
I figure I will give them a full week than politely call and ask the status of my paperwork and cardiac appt, does that seem reasonable? I just want it to all happen NOW so I can start feeling better! Over the past few years my patience has worn thin. 
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Taking it one day at a time.....
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I can certainly use any extra healing thoughts!!!!
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Taking it one day at a time.....
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I'm sending them at this very moment! They work!
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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If I were you, I'd probably be calling everyday. But that's just me. I haven't been posting much, but I've been dropping in to see how things are going. I'm so happy to hear that someone is actually going to do their best to help you. Can you please email me at hohoyumyum at hotmail dot com. I'd like to ask you about something but it can be somewhat of a controversial topic and I don't want to start a debate here on the boards.
Here's to feeling better and getting a new lease on life!!!!
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***********************
If you're not dead, you've still got time.
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Michele
#323779 - 02/01/08 04:51 PM
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Janey
Reged: 10/25/03
Posts: 1716
Loc: Maryland
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I am so happy to hear that you had a postive experience. One caring doctor who believes your symptoms and feels he has an answer can make all the difference in the world.
I know it must feel wonderful to finally have a diagnosis and a medication that will work. I will keep you in my thoughts that this will work for you and you will start feeling like your old self soon.
Work is fine. It is stressful and very busy. I really like the people I work with though which makes it tolerable. Thanks for asking.
Lots of hugs sweetie,
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Janey
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Hi Michele,
I'm so happy that you found a doctor who sounds like he's capable of treating your condition.
I have a friend who's been on Remicade for 2 years now to treat her chrohn's and it really has improved her quality of life. She said the infusions aren't that terrible as they play videos for the patients to watch while they're being infused (I guess it takes a few hours).
You're right though it is a very serious drug so I hope that it agrees with you and that it's what you've been hoping for.
Jenn
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Ditto hawkeye!
#323869 - 02/03/08 02:57 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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This sounds like a really good turn, Michele! You deserve a doc who's on your side. I'm also sending good thoughts your way!
~nelly~
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